#537: How Can I Suggest Ways for People to Actually Be Supportive?

Hi Captain et al,

Like a number of commenters here, I have a chronic, incurable (not deadly) illness. I am really quite ill, it has a huge effect on my life and, advances in medical science notwithstanding, I will be very ill for the REST OF MY LIFE.

But I get on with it, because there’s nothing else to do. My life is painful and exhausting and full of social security bureaucracy, medical appointments, social care, mobility aids and limits to what I can do. I can accept that and most of my friends have adapted with me to fit around what I can and can’t do and to help out when they can.

What’s upsetting me are a few friends who keep sharing pictures and statuses along the lines of “Share if you know someone with [illness]” or “Show your support for people with [illness] by putting this on your facebook wall for one hour” etc
And… those things don’t make me feel supported or cared for. At all. If anything, they remind me that those people never call or text, that they’ve never asked how they could help. It’s like… they want me to see that they’re thinking of me but don’t actually want to put in the effort to contact me or find out what I need?

How best can I say “I know this is scary but if you want to support me, actually fucking talk to me about it?” Or should I perhaps leave the issue of “stop posting things on facebook that remind me you’re not actually helping” alone and go to the effort of finding things to ask them to do? They clearly want to *feel* useful but I’m scared that maybe they just want to feel like they’re doing something and don’t actually want the inconvenience of me saying “The practical things you can do to help include making an effort to come to see me, to keep in touch with me, to take me out of the house some time and/or fix your own drinks and food if you visit me at mine. Sometimes I need people to make phone calls, to accompany me to appointments or to help buy equipment I need. There are things you can practically do to help but all of them require time, effort and money”.

I want to know what people are actually prepared to do to help but I’m scared of asking in case the answer really is: “I care about you and want to do whatever I can to help but I don’t want to do anything that takes time, effort or money”

Too Ill For This

Oh, TIFT, I would give you a solidarity fistbump of the chronically ill, but winter has come to my neck of the woods and my joints aren’t up to that kind of wild living. You are not alone, and in fact you are so not alone that a disabled friend of mine and I were just discussing this problem recently.

It is SO FRUSTRATING when non-disabled people want to make a big show of being supportive, but never so much as drop us a text message to say “Hey, I’m thinking about you.” I personally get a lot of comfort from the company of other grouchy cripples, where I can complain about this stuff. And honestly I hate that you are the one writing in here, because seriously, I feel like it should be them asking how not to be a dick to you. But you’re asking for help with solutions, so here is what has worked for me!

Unfortunately saying “what the hell, get that shit off your news feed” is unlikely to lead to a good result if you want to stay friends with these people. Which to be honest I’d seriously evaluate, because my energy is limited and I don’t want to spend it on people who are only interested in me as a public display of how virtuous they are. If you are feeling very diplomatic, have the energy, and really like this person and want to stay in touch, you can try, “Friend, I realize you’re probably doing it to be nice and because you don’t know how to deal with my illness, but I would feel so much more loved if when you think of me, you send me an e-mail or text message just to say hi rather than posting public things to your Facebook page.”

If these are people you don’t want to just unfriend, and you don’t want to get into the kind of Feelings Talk that the previous line will more than likely precipitate, then try starting them out easy with something simple and fun. “Hey, friend, would you like to come over & watch a movie on date at time?” is a good one. When they get there, say “Hey, there’s food and drinks in the fridge, please help yourself. My house is your house, my snacks are your snacks.” If they are squirrelly about so much as hanging out low-key for a couple hours, or snagging their own snacks and drinks while they’re there, then probably unfriending them is your only choice.

But possibly they will come hang out! Which opens the door to an actual friendship where they are not so weirded out by your chronic illness that they have no clue how to interact with you. But I certainly wouldn’t depend on them for something crucial like a ride to the doctor unless they’ve demonstrated they’re sincere and reliable if they offer help. We’ve all had that one non-disabled friend who flaked at the last minute requiring us to cancel something we really needed to get to, so putting your faith in untested people is risky at best.

Chronic illness/disability sucks in SO MANY WAYS and one of the worst is having to go through this sorting process. It is totally ok if you decide your time and energy are too limited for this crap and just cut those people free. You don’t have to be their way of demonstrating to the world how cool and awesome and caring they are with these meaningless public displays of glurge. There are other awesome people out there, and yes it is possible for us to find them.

And as a PS to all y’all non-disabled people out there who are wondering how to help a chronically ill friend:

1) clearly tell us what you’re willing to do. Don’t say “call me if you need anything” unless you mean “anything”. It’s ok, we understand that not everyone is up for cleaning litter boxes. Just let us know what you ARE willing to do: “Hey, I do my grocery shopping on Wednesday evenings, let me know if you’d like me to swing by & pick you up!”

2) Spontaneous help is ok, too! Just because you did something once doesn’t mean we’re going to expect you to do it all the time. If you’re over and see we need help sweeping up the dog hair because OH GOD THE GERMAN SHEPHERDS ARE BLOWING COAT. AGAIN. IN JANUARY. then just say “hey, do you mind if I sweep real quick?”

3) Remember that we do have interests & lives that are not our illness/disability. Talk to us about the shared interests that made us friends in the first place.

81 thoughts on “#537: How Can I Suggest Ways for People to Actually Be Supportive?

  1. OMFG, YES!!!! I’ve depression and CFS, and sometimes it would be great if someone else could sweep the damned house. Not that we’ve got German Shepherds, but trust me, Bull Terriers and Bullmastiffs can make just as much mess. Plus I get to wipe the walls free of slobber. But they make it possible to get on with life and their love makes all the difference. And I’m desperate to have another Irish Wolfhound, nine months into being wolfhoundless….

    Mostly, I just ignore those posts. Or block that friend from my news feed. I want to see what’s happening in their life, I look at their page (I do this with a friend who is a real sweetie but posts so much sport and dribble every day that I don’t get to see anything else – like the dog stuff which matters so much more to me). Which did mean I was a bit late to the party when it came to Tartanic…

  2. Solidarity fistbump for the chronically ill! (Mine’s more of a disability from an accident, but it causes me pain all the time and inhibits my movement, sometimes severely, and that’s not counting the mental problems).

    This one particularly hits home for me because GOOD GODS do I hate it when people want to seem like they’re helping when they’re really not!

    Probably going to frink a few people off here, but for instance – I hate, hate, HATE it when someone says “Oh, I’ll pray for you/them”, especially if you’re asking for help. I’m not religious, but I was raised as such, so I know the thought behind it….but it does nothing. It’s one of the laziest ways of feeling helpful I can possibly imagine. If I go up to a friend and bring up the fact that my back problems are preventing me from being able to properly care for myself in any way, having them say “I’ll pray for you!” is incredibly frustrating. Yeah, nice thoughts and good vibes are all well and good, but if you want to feel like you’re helping, get off your butt and actually help! Donate a few dollars to this charity, give that person a ride to get groceries, help move a sofa if they can’t or something! Sparing a few seconds to think about something doesn’t actually help, and doing/saying that in order to wedge yourself into the ‘helpful’ category is about as useful as repeatedly whacking someone with scoliosis in the back with a two-by-four. If you want to help, actually DO SOMETHING THAT HELPS. Wishing for things to get better never worked for anyone, and it is incredibly selfish to me for someone to say they’re helping when all they’re doing is thinking about something or sending a wish to whatever deity they worship rather than actually doing something about it, even something small.

    1. Id say donating to a charity is as useless as praying. Most times charities are bent like boomberangs and not a lot of money goes to the sufferers. Not that that invalidates anything you say. If people want to help then they will help in a practical and tangible way and do it for the ill person not for some personal spiritual genorosity goal.

      Im chronically ill but im physically able so i often feel obliged to help my less physically able friends but i always have to remind myself that i probably wont recieve the same help back so i need to figure out if im doing it for them or for me. If im doing it for their benefit then i can go ahead and help. I think its silly to deny we dont do things for selfish reasons. It only leads us to feel hurt and frustrated when we dont get a return on our “investment”.

      1. Some charities can’t be trusted, true, but there are a few that are pretty good at getting the money where it needs to be and actually using it to help people. There are a few sites out there that rate charities in effectiveness, and you can usually trust them (unless, of course, they’re run by a particular charity and thusly biased) and use them to decide who to donate to. Of course, if donating isn’t your thing, there are lots of other ways you can help.

        I understand that people tend to do things for selfish reasons, but if you’re not actually helping or worse, causing more problems, then that’s a serious issue. Expecting something in return for helping is favor sharking (is that the term? I’m not sure), not helping.

  3. I think this is a great response–I’m not physically disabled, but I am transgender and I have had debilitating mental problems in the past that people have had… similar reactions to. It’s annoying and it sucks and I’m sorry you have to deal with that, LW.

    A lot of people seem to want to be a Supportive Person (TM). What they don’t seem to realize is that, to do that, you have to actually invest time and effort into being supportive of someone. Oftentimes they aren’t so excited about that part. On that note, could you try hitting up these friends next time you DO need something concrete? It seems to me that that might help clear up the difference between who wants to SEEM supportive and who wants to actually BE supportive.

    1. I’m transgender as well, and when I came out, I got a lot of the Facebook support people too. One in particular was all about the FB support, but decided to pointedly not invite me to social events because now I’m complicated. It’s not worth dealing with, honestly, so I’m just kind of fading away. I don’t need to be a notch on someone’s diversity quota.

      1. Ugh, I know exactly what you mean about “now I’m complicated.” I’ve been on the receiving end of some of that too and it’s like people think we don’t notice or something. :\ It’s REALLY obvious if you suddenly stop getting invited to things.

        1. Same here. As soon as people started finding out I’m a guy, I was quietly removed from several groups that seemed to think I wouldn’t notice, usually after they’d promised support and told me that it made no difference. Right…so the way I’m suddenly being treated completely differently than I used to be is something I should totally ignore, right? Yeah, no. People like that are not your friends. If they can’t support you with REAL support, they’re not worth your time.

  4. nd as an interesting note for the people who are bothered by said posts, it’s impractical and overreaching to think that you can exert control over what your fb friends post on their own walls, but there are effective ways to manage what shows up in your news feed. You can unfriend people who aren’t really actually your friends, of course. But there are other ways to moderate or curate your news feed without anyone but you noticing. The best relatively new tool that FB offers is the ability to “hide all from …” which could be one of your friends, but could also be the offending page publishing the click mongering graphic(s) that you object to. You can access these options by hovering over the top right corner of a post and clicking the previously invisible arrow that will pop up when you hover.

    1. Since the posts are pointedly about the LW themself, I wouldn’t classify it as overreaching. Impractical, quite possibly, but when people make a post that’s about you, even if it doesn’t name names, I think you’re within your rights to have and voice an opinion on that.

  5. Hey, I kinda feel like I’m thread-jacking because I don’t really feel like I am “disabled” even though I have had chronic depression and anxiety which has impacted my life for years? I dunno, it’s one of those situations where if a friend said they felt like I felt and said they were disabled I would unquestioningly believe and support them, but when it’s me I feel like I should just be able to do what my parents advise which is to get over it and get on with it and feel better, now. Yeah. It kinda sucks.

    I used to have real trouble asking for people’s help and support. I got better at it by basically having things go so badly wrong (with dropping out of uni, starting and nearly wrecking a new business) that I couldn’t really afford NOT to ask for help. I needed that help, so I had to get over it and ask. Sometimes the help in question (like my uni’s counselling service) was pretty poor and didn’t actually do much for me. Sometimes it was incredible and life-changing.

    I learnt that there are some people who are amazingly helpful when it comes to practical things – if I ask them to give me a hand with the taxes that I’m finding hard or with organising a medical appointment, etc. Some of those people are not great at helping with the emotional stuff – listening to me if I’ve had a hard day or telling me that I’m doing OK and I’m still a good person, whatever. Some people are just not people to reach out to when I’m feeling shit. My parents are great in lots of ways, but for instance the other week my mum asked me how I was doing and I said that I was feeling anxious and overwhelmed and she sent me an email about how my worrying makes her worry and makes her wonder where she went wrong and called me the next day asking if I felt better yet. Then she talked to my dad about it and he sent me this big “pull yourself up by your mental bootstraps” email which was well-intentioned, but didn’t make me feel any better.

    I find it hardest to ask for things in a reasonable way in a romantic relationship. For instance, I find it really stressful to be around mess and my partner is very messy and can’t seem to motivate himself to tidy up at all before I come over. Or he’ll ask me what’s wrong and I’ll tell him that I’m feeling insecure about X or Y and he just – won’t say anything past, “oh, okay”. Yeah, sometimes it’s hard to know what would help and how to ask for it. I guess sometimes I feel frustrated that people don’t magically say or do the “right” thing to make me feel better in a moment, but I also know that’s irrational, especially when I don’t even know what the “right” thing would be. It’s not other people’s job to make it better – but I still secretly wish that it would be easier than it is, sometimes.

    In terms of supporting others – I think previous comments from the past thread about not saying you’re willing to help with things you’re not willing to help with is super-important. Having boundaries about offering help and support and being realistic about those BEFORE you propose help is very wise and smart and stops you from hurting people unintentionally. I’ve definitely been pretty bad about this when I was younger and got very drained from trying to be there for people at my own expense, and it never ends well for me OR for them when I inevitably pull back.

    1. re: helping with the emotional stuff — Does anyone have a polite, non-judgmental way to communicate “I would really rather not be your Emotional Support Person”? Requests to do/not take specific actions I can handle fine, but finding myself unexpectedly listening to someone vent their emotions makes me profoundly uncomfortable, especially if they’re loud, angry, or I don’t know them all that well. What most often happens is that I end up alternating “I’m sorry” and “Wow, that must suck” ad nauseam, feeling stupid that I can’t come up with anything better, and I imagine they aren’t feeling all that great either because it’s not like I’m actually doing anything to make their problem suck less.

      1. “I am not a good audience for this right now. Can I be friend-who-distracts-you-from-problems for the time being?”

        It feels weird and rude to say, but wouldn’t you rather just have someone tell you what they can handle than grit their teeth and resent listening?

      2. Don’t underestimate the power of “I’m sorry” or “wow, that must suck”! Lots of the time people do just want to vent and get validation that what they are upset about is legitimately upsetting, and actively don’t want people who offer solutions. If it’s a good friend who does this to you regularly, you can have the meta-conversation like, “I always feel like I’m no help in these conversations because all I can do is agree that it sucks, and I don’t have any solutions. Is that actually helpful to you?”

        However, if you don’t feel comfortable doing that, that is also totally legitimate. You’re allowed to decline being the person who is vented at.

    2. I am like you a lot and i have a messy “ah ok,” partner. Sometimes i feel like i pick people who cant support me deliberately but subconsiously.

  6. Oh, and I guess I also learnt that some people are just not good people to be around when I am feeling depressed or anxious. Like, there was this one guy (who had been hospitalised for anxiety for three months, so I thought if nothing else he would be sympathetic) who was bugging me to hang out at this paid event he ran. I told him that it sounded fun but I was feeling sad and anxious right now and wasn’t up for it. His text reply of “Stop being depressed and start being awesome!” and that he’d still encourage me to come along (and pay – which made me think that might have been his motivation rather than just reaching out to a mate) surprised me and made me feel frustrated. We’ve not really spoken since.

    1. One of the hardest parts of chronic illness for me is sorting my friends into circles of support. It’s hard for me to ask directly for things, even when I know my friends would be willing to provide it.
      Asking is a risk. I’m putting vulnerable, ugly, uncomfortable parts of me out there, and hoping for the best. Asking and realizing that someone is not at the level of support I thought they would be, it hurts.

      Your story reminded me of an acquaintance who used to be a good friend.

      One evening they called me up to hang out, and my spoons were already spent, so polite decline.
      They said I hadn’t been around as much and asked if everything was okay.
      I only share my issues with very close friends, but we seemed to be heading in that direction, so I took a chance on honesty. During depressive episodes it takes everything I’ve got to handle day-to-day functionality, so socializing goes on the back burner.

      They started yelling at me to never talk about myself that way again. That I was “happy, fun and caring,” and “not the kind of person that could get depressed.” That I was “a strong person” and “better than that.”

      I hung up the phone, because I couldn’t come up with a response. We never talked about it, and saw each other at social occasions, but weren’t close after that.

      It was hard to lose someone I thought was a good friend. But they weren’t friends with me, they were friends with the person I was supposed to be.

      When people talk about being ‘strong’ or ‘awesome’ what they mean is hide that thing that is making me uncomfortable (illness, sexuality, ethnicity), and I will pretend it doesn’t exist while continuing to help myself to your time, love, and energy.

      Fuck that.

      I’m sorry someone you thought was a friend was awful to you.

  7. Erk. I actually sort of disagree with this. Strongly. (And, yes, before someone asks: I have chronic illnesses, fairly severe, both physical and mental.) I know that some people really hate the “tell me if you need anything” because they don’t have the spoons (or whatever is the metaphor of the moment) to instruct someone… but I frankly hate someone randomly saying “I’m going to bring you a casserole/walk your dog/take out your trash,” because I’m a supremely private person, and it feels really intrusive. Like, makes-me-crawl-under-the-bed intrusive.

    I’d much rather be asked, “tell me if you need anything” than be told “I’ll walk your dog!” or just have you show up to walk the dog.

    And… frankly, I feel way more supported by generic “if you have [insert illness that I have here], then I support you” than by someone emailing me with “Hey, I support you!” Because the latter I feel I have to respond to, and with my illnesses, that’s way worse–and furthermore, it makes me feel pigeonholed; I don’t want to be Your Friend With X, I just want to be your friend. I don’t want them to “actually fucking talk to me” about my illnesses, because that actually plays into my illnesses in negative ways and makes demands on me that I am not willing to fulfill. I get that other people want that… but I’m uncomfortable seeing it proposed as the unilateral Good Thing to do. Because it’s actively negative for me.

    And maybe the people who are doing the “wrong” thing for you are doing it because it was the “right” thing for people like me, and that’s what they learned. And maybe the people who are doing the “wrong” thing for me are doing it because it’s the “right” thing for people like you, and they learned that.

    We’re not all alike, we chronically ill people.

    I think the conclusions is: ask your friend what they need. For OP, it’s clearly direct individual contact and support. For me, it is absolutely not that. We are not all alike, and I think that a lot of ableism activism has–for entirely sympathetic reasons!–flattened those distinctions.

    Mileage may, obviously, vary.

    1. The main reason I haaaaate “tell me if you need anything!” is that I’ve had too many go-rounds with it that run like this:
      “Tell me if you need anything!”
      “Thanks so much for the offer! I could really use help with x!”
      “[insert a million reasons why they can’t]”
      Repeat ad nauseam.

      That is, in my experience hardly anyone means “anything”, and I just don’t have the energy to play a guessing game figuring out what they’ll actually be willing to help with.

      And I’m definitely not advocating just showing up to walk the dog/whatever without asking first. I have been known to have weird reactions to people Touching My Things. But at the same time, it’s occasionally really nice to let someone who offers sweep up the dog hair before the laminate floors start looking like shag carpet.

      1. Yeah, I get you, and yet.

        I really don’t want random people to engage me on My Issues(tm). Even if there’s a convenient blog reminding them of the issue. I’d rather they reblog and leave me alone.

        I really don’t want anyone to guess at what I need. Even with the blessing of random other bloggers.

        I really don’t want people to randomly start spontaneously offering to clean up my dog hair–because you might find it helpful but to me it’s humiliating.

        I really would rather you respond to a meme about my issues with a reblog rather than ~reaching out to me~, because the reach- out is usually condescending.

        I really would rather answer a “what can I do?” than deal with someone guessing.

        Even if you disagree.

        I hate that I have to prove my cred for this… but I can, and will.

        All disabled people, all anxious people, all WOC, are not alike. The answers for “how to deal with this hard question” will never be simple. I’m sorry.

        1. I can see why the vagueness of “Is there anything I can do for you ?” bothers The Goat Lady, because it is so vague and often is insincere. The feeling of being helpy without the actual help when the chips are down. The feeling of having to be vulnerable about the unswept dog hair, or whatever task needs solving. It sounds like feeling loved, for Goat Lady, is to have friends notice what you need and provide it without a verbal negotiation taking place. I’m also reading, in the advice, situations where friends are VERY intimate with each other in terms of hanging out in each other’s homes – knowing where stuff is, knowing what tasks need to be done, feeling at home enough to clean without checking first, etc. This is not everyone’s level of intimacy or comfort.

          But Badger Rose, I feel you – someone charging in and deciding what another person needs help with is not necessarily the way to go, and I can see this approach resulting in a lot of hurt feelings and fuckery around personal space and autonomy. What’s the word I’m looking for….ah, concern trolling, where people offer “help” with a humiliating catch. It sounds like feeling loved, for you, is about people asking respectfully and not assuming anything. And I can understand why you are cringing at the thought of people reading this post and then sailing into the houses & lives of their disabled friends bearing Unwanted Casseroles and patting themselves on the back – it’s more intrusive than vague Facebook inspiration porn bullshit to be sure.

          So we’re in heavily context-based and culture-based territory here. What is the intimacy level of this friendship? What discussions need to take place?

          I really like the Goat Lady’s suggestion for the LW to try to just hang out with people as a first step to connect. Someone who can’t make time for a movie night can’t be counted on for day to day nitty gritty stuff.

          And then a conversation needs to take place. “You asked if I needed help with anything. Here’s actually what I need help with, is that something you could do?” “I want to be able to offer you help when you need it. What does that look like for you?” “It’s hard & frustrating for me to actually ask for this stuff, so it would help me sometimes if you would just jump in sweep the dog hair.” Or “It feels really forced and violating when you offer specific help, like you’re picking out vulnerable areas and criticizing them. Ask first. Or wait to be asked.”

          It’s possible to negotiate this while having VERY different needs & styles.

          Respect and reciprocity above all.

        2. I feel like this goes back to the question of Ask/Offer culture. In this situation it seems like Goat Lady is expecting people who want to help to Offer to help whereas Badger Rose is expecting people to understand that when they want help they’ll Ask for it. To Goat Lady “Let me know” is a brush off because it’s not a concrete Offer and to Badger Rose it is someone Asking to be informed about the right way to help. I hope that’s not reading too much into your respective mindsets but I think that it might be a helpful way of understanding why you’re disagreeing on this.

          1. I have a lot of friends who use Facebook for this sort of thing: “Hey guys I need a ride to X at Y date, is there anyone who can drive me?” or “Is there anyone who’d babysit for a couple of hours so I can escape?” etc etc etc.

            This method can definitely work! If you have people who actually want to help, then you’ve given them something they can volunteer for, and if you don’t…well, at least you’ve minimized having to actually ask the fakers (or even just those who can’t do that specific thing or time for you).

          2. Belatedly: yes, I think that’s entirely fair. And I think it also plays into cultural differences–while I’m American, I come from a cultural background that is strongly Ask rather than Offer. In fact, to my culture, anything as blunt as “let me sweep up your dog hair!” would be generally interpreted as “you are a terrible housekeeper.”

            (I would ask that people please, please not say that a culture who interprets it that way is Terrible. That’s a kind of cultural imperialism that, while I’m used to it, is not a good thing. It’s okay that cultures are different in these ways.)

            Really, I think my resistance is in the idea that there is one Good Way to deal with people with limitations (by which I mean, disabled people, ill people, whatever). One person’s “The Right Way” may be another person’s “Oh God No.” I have seen so many people say that asking “what can I do?” is Terrible and that you should just do it, and I finally had to say: okay, maybe for you, but please for the love of god don’t tell everyone that. We are not all alike! You might want them to just walk your dog; I might hate it! All of us people with limitations are different. Ask. Or if we can’t deal with being asked for some reason, ask our partner/SO/best friend/whatever. But don’t assume that we’re all alike, please.

            My best friend would love it if you showed up with a casserole. I would get literal hives. So, please, ask.

      2. Would you find a blanket offer better if there were concrete terms attached to it? e.g. “Let me know if I can do anything–running errands, pitching in with housework, or if you just need to get out of the house for a while–I really want to be there for you.”

        When I tell someone, “Let me know if I can do anything”, I always mean it–and I’m wondering if being specific with some examples might make it feel less like a throwaway “look at how CHARITABLE I am!” and more like, “I’m serious. Treat this like a blank check, and know that I will actually show up to cash it.”

    2. If it helps, I seek a middle ground between Goat and Badger – stripey with hooves. For all kinds of reasons, some to do with temperament, some to do with personal history, I cannot stand folks asserting what they’re going to do for me. Explicit offers are cool but only in context. I imagine “Do you mind if I sweep up real quick?” would always press my buttons, along with, “Do you mind if I buy you a new jumper to replace that old one you’re wearing?” or “Do you want me to take all this old junk away?” indicating my treasured possessions. (I’m sat here in a tidy room wearing decent clothes, but I have had people in my life who have chosen to see me that way – as the Captain says, concern trolls).

      However, sometimes I do get by with a little help from my friends and I’ve had the same trouble as the Goat Lady with the caveats attached to “anything I can do”.

      One trick I use is to mention circumstances where I could have used practical help (more caution required with examples of emotional support). For example, “Last week was a bit grim because I couldn’t get to the pharmacy to pick up my prescription so had to go without for a few days.”

      To which they might respond, “Oh, that sucks.” or they might say, “Oh, well I’d have been happy to pick it up and drop it in with you. Let me know if you’re in that situation again.”

        1. I like to think of myself as a zebra. Junior doctors are often told “When you hear hoofbeats, think horses not zebras” meaning that when they are looking at a symptom they should go with the most obvious answer rather than an incredibly rare disease. As someone with a weird disease I am the equivalent of the zebra in the analogy.

          I have a huge tattoo of a purple zebra to remind me of that fact.

          1. That is fantastic. Because, you know, just sometimes, it actually IS a zebra.

            I wonder if someone with smallpox would have to have a tattoo of a quagga?

    3. See, this is always a thing I worry about, not just in this situation but in any situation where we’re told “Tell me if you need anything” is the wrong way to be supportive.

      I’m terrible at social cues. I’m terrible about figuring out what other people would need or would like, and part of that is because I generally don’t like things, even favors, popping up in my life unless I’ve planned for it, and while I know most people aren’t like that, I don’t know how to “do unto others” because usually “as I would have done unto me” would be “wait until I specifically ask for something.”

      So I always worry that I’m stepping on toes.

      That said, some of Cap’s suggestions seem like things I could do, where it’s not so much an “I will do this!” or “surprise casserole!” but an “I’m doing this right now; would you like me to do thing for you that is in the same area.” I think I’ll work on trying to frame offers of help like that when it comes up again.

      Argh, social is confusing.

    4. I’m not chronically ill or disabled, but a friend of mine who is uses “Would it help if I helped?” As in, I recognise that not all “help” is actually helpful, so before I leap in with an offer I’ll check your boundaries first. That’s always seemed to me to be a good way to start a conversation and then both people get to negotiate whether offer/ask is the best way forward.

      Also, I’m a little leery of the phrasing “do you mind if I…” For some reason, that kind of makes it sound like the hoovering is for the benefit of the offerer, not the recipient. “Hey, would it help if I …, or would that be weird?” would probably be my version.

      1. Hm, I like “would it help if I helped”. I had a friend go through cancer treatment recently and I tried to figure out how to be supportive, but it felt pushy to ask “is there anything I can do?” every couple of weeks. I couldn’t just stop by at her house though (she is super introverted) and I have no way to get in touch with her husband, so I didn’t know what else to do.

  8. (I will be interested in seeing how other chronically ill people approach this, since my approach is obviously so different!)

    1. Oops, this sounds kind of nuts in isolation. I have a whole long response that’s stuck in moderation, which this was meant to be a followup to.

  9. This may not be the best way to go about it for everyone, but I had a fair number of friends/acquaintances who I felt really did want to be supportive… but maybe didn’t know how to to about doing that or how to broach the topic with me.

    I basically sent out a note, in a couple of formats that read something like:

    “I know most of you know about [my precise condition] and are aware that it can sometimes be a significant impediment to functioning in my daily life. You may not know, however, the specific ways I most often need help or understanding.

    So I’m making a few lists. I’m looking for:

    1) Local people who might, if I call you with at least the previous evening’s notice, be willing to drive me to and from work — or even partly to and from work. (Our city bus system is far from perfect, but I am also now a city bus navigating champion, so.)

    2) Local people who can be flexible about altering certain social activities to becoming more low key. For example, watching a DVD at your house or my house versus going out to… anywhere. I’m not suggesting you need to alter everything with me, but letting me know whether something is flexible or firm is a great start.

    3) Local or online people who don’t mind me finding them on chats when I can’t sleep and/or who are happy to send me links to amusing things. In moments like that, I really do want to know your Harry Potter IQ or which 80s Republican presidential candidate you would be. It’s a good escape, you know?

    If none of this is for you, feel free to contact me about anything individual. But if there’s anything on here you’d like to offer — and believe me, it will help — please let me know.”

    1. From someone who isn’t dealing with such difficult issues–I’ve had friends do something similar, usually on Facebook. And it’s been incredibly helpful to let me know what that person needs. It allows me to call them up and say “I’ll be in the neighborhood, saw on FB that you needed someone to XYZ, would tomorrow work for you?” And that made me feel a lot more helpful and a lot less flounder-y and nervous about trying to figure out what I could do to help.

      I’ve never wanted to jump in and offer to do things like housecleaning (see Badger Rose’s thoughtful post above), because if my mother or a friend came over to my house and said “I see you’ve let the dog hair pile up a bit. Let me get that for you” I’d be mortified, and I’ve always assumed it was the same for my chronically ill friends as well.

    2. Something like this would be really helpful to someone like me. I’m generally a very private person and it probably wouldn’t occur to me to offer specific help because, as Badger Rose said above, I would probably find it intrusive if the situation were reversed. I generally tend to err on the side of MYOB, and it’s good to be reminded that not everyone is like that.

      Of course, I also don’t post [disability] awareness FB messages, so there’s that.

    3. I really like this suggestion– I respond well to specific requests for assistance. At an announcement like “Bad thing occurred/is ongoing” my programming dries up rapidly after “I’m so sorry!” and “Can I help with anything?”

    4. Thank you so much for posting this – between that and the discussion Badger Rose started about Ask/Offer and what it means to help, I was inspired to write a detailed post for my friends about my condition and specific needs/approaches that will help, which was pretty well-received. Bonus: now I have something already written that I can refer to when people ask! Because, while I don’t really mind talking about it per se, it gets old, y’know?

  10. LW, thank you for writing — it has really made me think about the message those “support” things are sending as well as their intended and unintended effects.
    I would like to say one thing, however, which is that Facebook can sometimes give the impression that everyone else’s life is already oh, so full. That is to say, when I want to offer a cooked dinner or some babysitting or even just a quick message to someone having a hard time, I tend to think that that person is probably already swimming in casseroles and has friends flocking around and they won’t need or want help from me. It’s not that I don’t want to bother, it’s that I don’t want to BE a bother.
    It might be helpful to have a very concrete pre-planned list of tasks that people can help you with, AND an idea of how often you would like help. It is much easier for me to remember, oh it’s the fifteenth, I’m going to make a couple of extra meals for Caroline tonight, than to constantly have to ad hoc whatever might be helpful.
    Wish I could give you some baked ziti.

  11. Hello LW and Captain A and everyone else!
    I’m also chronically ill. When I first got ill I found a lot of my friends disappeared away but would still be happy to ‘speak out’ against illnesses and post about various causes.
    I’m torn between wishing they understood what it is like to live my life and accepting that it’s OK (and actually kind of good) that they actually don’t and can’t know.

    To me, it sounds like they want to help since they are posting a lot of stuff regarding your illness. I think they don’t know what to do, but they do want to help. This is one of the things I think that makes a lot of people struggle to be friends with me and the ill as a whole. Probably they don’t like to see the suffering, and they can’t really get past the mountains of ‘I can’t fix this’. Then they just give up and don’t bother with the foothills of ‘I could offer some small practical help or a listening ear’ etc because the over arching mountains are still really scary.

    In truth, I think nearly everybody *wants* to help, but whether they can is another story. It does take a sacrifice from both sides if this is their first foray off the path of ‘no major or long term illness etc has been in my life’. (Sadly we don’t get a choice!)
    They have to learn things like ‘all the positive thinking in the world can’t make the thing work’ or ‘some days it just wasn’t going to work out any other way except awful’ and I think that can be (understandably) very scary for people and they have to re-evaluate how they view life as a whole. And then on our side we have to deal with ‘this person is probably going to try and sneakily fix me’ and ‘they might be weirded out by my medical stuff’ or really: ‘their not understanding and fear will lead to more illness and suffering for me’.

    It’s hard and I don’t think it is a bad thing if you decide to let them go and try to find some people who are more understanding or already in the zone of understanding illness. (Chronic illness forums online are good for this.)
    But if you venture into bringing the people back into your life and trying to explain the illness, I think it is good for your stress levels to accept that sometimes it will go wrong, sometimes they’ll misunderstand and you have to stay out of bed for too long or you end up feeling angry because they won’t stop accidentally doing something that hurts you (I’m sound sensitive and it’s easy for people around me to forget.). Just try and explain and let some of the things go. With friends you can even back out again if you don’t think it’s working well.
    It feels like a great injustice that you have to put in precious energy to someone that might turn out to have been a waste of time, but on the other side, you might end up with some great friends, once they’ve learnt a bit more about illness.

    Oh, and make some chronically ill friends who you can talk about it all with!

    Hope this helped, sorry it was kind of long. Also I don’t think it’s right that ill people have to explain things and put up with mistakes from their well friends, but it’s just my experience of how it goes, as someone who has been ill for a long time.

  12. Much of the Captain’s response implied this, but you may find it useful to decouple “Friend is posting unhelpful things on Facebook” and “Friend is not providing any direct support.” It sounds as though you wouldn’t care one way or the other about the generic “share this” memes if they were also calling and offering to do stuff for you.

    As an aside, the memes themselves may have a positive impact on those who read them, depending on what disability or disease they’re about. If it’s a disease that some people sneer at because they’re ignorant and judgmental (e.g., myalgic encephalomyelitis, aka “chronic fatigue syndrome”; fibromyalgia; any stigmatized mental illness), then the mere existence of a meme that assumes the condition’s reality and degree of seriousness might make at least a few readers quietly adjust their attitudes.

    If society at large already believes your illness is a big deal, though, this probably doesn’t apply.

    1. YES. i’m bed-ridden (ME/CFS) & closeted on fb. ignorant and judgmental attitudes are too common, and too much to deal with.

  13. I think the best way people can support each other with problems like that is to say “If you need help with something, let me know what it is and I’ll do my best!” and then actually HELPING when they ask for something specific unless you really can’t. If you can’t, tell them the real reason why unless it’s something that has to be kept under wraps. If you’re having a bad day/have no spoons left, tell them that you can’t at the moment, and why, and maybe offer to help them with it at a later date if it’s still a problem.

  14. Kinda different, but I’ve definitely collected a fair number of people on facebook who I’ve identified as someone I’d never ever go to if I had depression-related issues, based on their posting of fluffy facebook posts “in support of depressed people”.

    It’s handy for picking out who to avoid.

    1. In a similar vein, I’ve compiled a similar mental list based on people who post “Depressed people are lazy and should pull themselves up by their bootstraps” posts.

  15. I have a slight questioning of assumptions here. It is quite possible that a) these posts mention your name and b) it is highly unlikely that these friends know anyone else with your illness but I would confirm these post are about you before you ask that they not do them.

    Honestly, would you be annoyed at the posts, if they were actively trying to support you? If not, then I wouldn’t mention them, I would mention the issue you’re actually having, which is that these people dropped out of your life. I get that you have a lot of anxiety over friendships that don’t seem to be as mutual as they once were. You don’t want confirmation of that loss. But these posts they’re making aren’t giving you peace either, so which to you is worse: the certainty that these posts are making you feel bad or the uncertain worst case senario that your friends no longer want to fully engage with you.

    But if you’re not willing to talk to them about it, but you don’t want to defriend or block them, then I would suggest pretending that these posts are for someone these people know other than you.

  16. May I also say this doesn’t just apply to PWD – when I split from my husband I had a lot of friends say, “let me know if there’s anything I can do” or “I’ll help any way I can” – but there is no follow-through and I don’t like asking them to babysit for a night so I can go out, or come over and wash my dishes because I’m just over it…

  17. I just wanted to post in solidarity. I am also disabled, though mine isn’t readily apparent. I had a serious illness as a child and as a result I was left severely weakened. I fatigue easily, require a lot of rest, have some minor pain, etc. However, because I don’t take medication for it, don’t use a wheel chair and because the illness I had was so rare and weird, I have sort of the opposite problem as you in that I at times have to convince people that I am disabled (which is always weird and kind of insulting). These discussions always leave me second guessing myself which is stupid, because I should know and be the person best equipped to explain my needs.

    I found the link below helpful in explaining to healthy people what it’s like to be ill/disabled.


    1. In addition to the spoon theory, I’ve found certain literature really helps communicate my experience of illness to the people in my life. Without derailing this thread I hope I can share a reading suggestion– the poetry of Rusty Morisson, who herself lives with chronic illness. This is a poem of hers:

      “to formulate the fear of disaster still implies a faith in the future”

      The grocery store, the checkbook, the eight anxious people in line behind me, the aggrieved clerk, the pen that he offers me but I will not take—how many people today have used that same pen? How susceptible has my illness left me today? The rudeness of my not accepting his pen
      closes its eyes, like a cat that does not turn its face toward the sound of its name.
      I cannot explain. My quiet is chronic. I will find my own pen at the bottom of my purse. This will take some time.

      You can find more of Rusty’s poems here: http://thermosmag.wordpress.com/tag/rusty-morrison/ Sometimes I think it’s nice to have a book to recommend, or a brief poem to share.

  18. Can I just say I hate those “if you… then post this on your wall” peer pressure memes? *ARGH* Any kind, really. It’s that superficial behaviour that makes me hate FB at times.
    The “I’ll help anyway I can” thing also is a cultural thing. The US has these catch phrases that are often known to be just that – polite hellos. In the beginning that is very confusing to Europeans who take “if you need a ride just call me” at face value and make both sides very surprised when they actually do call. Europeans are a bit more careful with saying that, but the end result is the same – no help given.

    I’ve just recently had a bad case of offering a finger and losing a hand in the process so unless I am *really* willing to put a lot of effort into it, I try to be cautious or phrase very carefully what I can offer. Being currently in a bad sport myself, moral support is hard for me to give. With next door neighbours though I have little problem taking their trash out or shovelling snow while I’m at it anyway.

    The idea of inviting people over and just making them realize you’re a normal person with a disability, but still normal, is probably the best way to sort friend from jerk. Some of us are scared to death by illness, and contact helps, funny enough.

    As for the FB people – I’d probably use the next opportunity and actually repost the support slogan on my FB wall, then add some text to it: “I am one who has this illness. To be honest, these support posts are more embarrassing than useful, so please know that you will rise in my esteem if you send me an email or call me, or drop by a lot more than if you post something that embarrasses me. I love you all, and it’s nice to know that you care, but public display isn’t going to make it any better” or something along those lines. But that is me. I speak my mind and sometimes tread on toes 🙂 Diplomacy is not my middle name.

    1. I hate those memes too. Why? Because they’re an unending slippery slope of guilt-trip. Because once you start posting them, people will get all upset if you care about Clinical Foo but not Chronic Bar. I have a blanket policy of “I NEVER repost any ‘share this if you care’ status, no matter how much I a) love you or b) support your cause.” Once in a while I post said blanket policy.

      1. I also hate the way they’re often a way of spreading misinformation. There’s one that particularly gets my goat that runs something like ‘depression is not a sign of weakness: it’s a sign you’ve been strong too long’. And I totally get the sentiment, but depression is an ILLNESS, not a sign of the strength of your character. I feel like it’s actually a meme that feeds into the depression jerkbrain, where you start to measure yourself against some random definition of ‘being strong’ and then convince yourself that you didn’t meet it and therefore you don’t ‘deserve’ to be depressed. Grr.

        …and apparently that has been simmering in me for a while.

  19. Hi LW, Cap and the Awkward Army. Just to let you know, this post has inspired me to contact a friend of mine who has a chronic, debilitating condition and send him one of the famous Lists of Ember™: what I can do, what I am prepared to do and a realistic timetable of when I am available.

    So thank you, because I have been wondering what in real-world time I can do to help him without my “help” being a burden to him and now I know.

  20. One thing I would ask LW, I can’t tell if these news feed items involved tagging you or are linked to your profile or mention your name.

    Is there a chance some of these links/pictures may not be about you? I know they’d still be annoying to see, especially if these people aren’t giving any support at all, but it could concern someone else in their lives and maybe the opinion that they’re not doing this AT YOU may give you some peace of mind?

    (I know it’s a small chance, but as someone who got told off by a friend of a friend for posting awareness/science links but not ‘supporting’ friend, there can be reasons and you may not know them. I very bluntly told friend that there was a reason my main charitable donations/fundraising were split between the MS Society and the Young Carers (via the Carers Trust) and that unless you were my best friend or an immediate family member, I would accommodate but not help)

  21. Now I want to learn internet graphics skills so I can make a meme that says “If someone you love has ______ get the fuck off Facebook and drop them an email (not a forward, either!) or call them. 96% of people reading this won’t do it. Will you?

  22. oh man, I wish people would do this. my mother is forever helpily bringng me magazines and clippings about miracle fibro cures. these gather dust in my increasingly squalid flat because cleaning shit up can rarely be done on the same day as washing and feeding myself without knocking myself flat for days.

    I wish to hell she would laundry or litterbox for me. If I ask her to she’ll make a big martyred performance out of it.


  23. I struggle with being the healthy person in situations like this. I was raised in the era of political correctness, one of the rules being that it’s offensive to do anything to point out someone’s disability. Remember the term “differently abled”? As in, “hey, you’re not really disabled. You can do everything I do, just different. Go you!” Along the way, I’m sure many people were left with the impression that it’s actually offensive to offer help or to do things for the disabled because, in doing so, you’re essentially pointing out their disability, which is wrong.

    The whole idea is, of course, ridiculous, because the disabled or sick KNOW they’re disabled or sick. But still, it’s been really hard for me to unlearn this stupid mindset. It’s also hard, then, for able bodied/healthy people to know where the line is drawn between “I’m offering to help you” and “I’m doing this because I pity you”.

    I say just ignore the Facebook posters. They’re phonies. Focus your energy on the folks in your life who have demonstrated over and over that they really are there for you. These people are your friends!

    1. I struggle with a similar problem, and I’m not exactly on the healthy side. Not long after my Asperger’s diagnosis, a psychologist told my parents I would probably not finish high school (let alone go to college), never have a job or a ‘real’ relationship, and I should give up any hope of living independently. My parents and I were of the same mind: screw that guy, I’m gonna do all those things. And I have (except the relationship, still working towards that), but it took years of behavior therapy, testing, recognizing and adjusting to problematic environments, and plenty of experience ‘in the field’ to get where I am. I can pass as ‘normal’ to the point where a reveal comes as a shock to people… but it’s still just ‘passing’ for me, like wearing a well-fitted mask I almost forget is there. Almost.

      I still have problems, though, especially with executive functioning. I almost entirely lack the drive to “just get it started” and to keep up steam past the initial sprint. Organization and planning rarely catch on. I often suffer from ‘out of sight, out of mind’ (perishable food no longer goes in the opaque bottom drawer of the fridge…). When I’ve got large projects due in three of my classes, it turns into a serious problem. But I’d trained myself to never view my Asperger’s as an excuse, which turned into “I won’t ask for help because I shouldn’t need it.” Even when I want to ask for help, I often don’t know what would make it easier without having someone else do the things that need doing.

      A year ago, I would have been right there with past you saying “differently abled, yeah!” I do believe my atypical wiring has given me unmatched benefits. But, I now realize I had plenty of disabling aspects along with that, and while I’ve overcome enough of them to function in society, I still struggle with a diagnosed disability. It just feels… I don’t know, odd, presumptuous, perhaps diminishing of those with fewer spoons, to say that I’m disabled too. I feel like I rarely have to count my spoons, although maybe I’ve been working so hard to fit some definition of ‘normal’ that I’m blind to them.

      And (finally) getting to the problem: I feel I can’t even use my own experiences a lot of the time when trying to relate to (other) disabled folks. I’ve wanted to support autistic self-advocacy and lend my voice to fight the deluge of misinformation, but I’m afraid I’ll misrepresent things, or all I’ll get is “You can look me in the eye, you aren’t like my offspring/sibling/relative/friend’s relative, real autistics can’t talk” and I’ll have accomplished nothing, or worse. It filters all the way down to “what do I say/not say to this possibly awesome person? How do I connect?” and… maybe my jerkbrain is getting the better of me, maybe it’s a hole in my social knowledge. Either way, I don’t want to end up hurting someone with a faux pas.

      So, long story short, alternatives to the “differently abled” line of thinking – and proper lines/scripts/attitudes – are always helpful, and I hope the comments keep being awesomely educating with different perspectives!

  24. Thinking about the difference between Goat Lady and Badger Rose mentioned above. Context: I am physically abled, but have, at different times, been varying levels of incapacitated by mental illness. I think I see a little bit of both sides.

    One of the things that strikes me is that often in friendships between people who are disabled and abled, there is a similar dynamic as that found between women/men or in other oppressed/less oppressed couplings — which is to say, that the disabled friend (or the female friend, or whatever) is automatically charged with the management of the relationship and emotional regulation of what happens between them. So all the work of planning what needs to happen and how is coming down disproportionately on one side, and that’s exhausting! In a friendship or other relationship, I want to feel like the other person is investing enough to meet me halfway, and that they are looking at me carefully enough to understand where “halfway” in terms of relative effort expended actually lies. So even if I’d prefer another person didn’t presume to say, “Can I throw out all this crap on your desk,” I’d like them to at least notice that the conditions of my existence enough to consider that help might be needed.

    I guess I feel like you should be able to ask a friend with a disability how they prefer to have things go. “You seem to need some help sometimes. Is that the right impression? Should I make you a general offer and know that you’ll tell me what you need, or would it be better if I made a suggestion of something I could do?” When my mental health is not very good, the latter option would be infinitely superior for me, because both planning what needs to happen and believing that I have a right to ask anyone to help me are very hard things to do.

    What seems to me like the important work that needs to happen on a would-be supportive friend’s account is thinking through what accommodations need to made for fun activities, so that it is not always falling on the friend with disabilities to check to see if the restaurant is wheelchair-accessible or if it will take too much energy to get to the theater and back. It’s reasonable to expect people to be familiar with your needs and limitations and plan accordingly.

    1. YES! Yes this is such a good point. It’s exhausting to have to audit every potential interaction that is offered before you can say yes or no. It would be so much easier if a person took into account the specific needs of the people they’re inviting to do an activity. I mean, if they want to hang out with that person shouldn’t they want to do something that the other person can do? Otherwise it looks more like they want to do an activity and decided to bring whoever was available along. Start with the person you want to spend time with, figure out the activity with the person in mind.
      And if you have an activity you want that the other person can’t do, no way to accommodate? Don’t give them the pity invite that you expect them to decline. “I invited you even though you can’t because I didn’t want you to feel left out” just means “I invited you even though you’ll feel left out because I didn’t want to feel guilty about not making plans that can include you.”

    2. I was able to have that conversation explicitly with my best friend when my mum was diagnosed with cancer. She sent me an email saying how sorry she was, and that she was just going to drop back a bit for now because she assumed that I would have tons of stuff going on and she didn’t want to bother me at such a time. I sent an email back going, NO, don’t do that, the last thing I want is to be responsible for keeping the friendship going on top of everything else! Keep emailing and phoning me normally, just forgive me if it takes me longer than it should to get back to you. She immediately emailed back, OK, cool! That I can do! It was a really nice example of explicit suggestion -> refusal -> agreement working out.

  25. I’ve gotten a lot of “OH IF THERE’S ANYTHING I CAN DO TO HELP LET ME KNOW!” comments since I got sick, but the act of saying “Actually can you do X?” is damned near impossible for me. Half because I have a very hard time asking for help, but part because I don’t know if it’s a generic line, or if they actually mean it. Since I already have a hard time asking for help, not being sure if they mean it and running the risk of asking and getting brushed off is too stressful for me (I also find the act of, in the moment, thinking of a thing they COULD do to help really hard). I find “If there’s anything I can do to help, let me know.” followed by a specific thing a lot easier, because then I can just say “Actually yeah that’d be great”. Even if I ask them for something else*, the fact that they offered a specific (to me) means that they are aware of the type of effort that goes into “helping” and are therefore more serious about the offer, so if they say no it’s “I can’t do X, sorry” not “Oh, I didn’t actually want to help, I just offered that as a condolence, sorry!” and that’s a lot easier on me.

    Also to comment on the people above saying “If someone offers to clean for me, it makes me feel like they are judging my house keeping” a good time to make offers like that may not be when you notice the dog hair, but when it comes up in conversation (especially if they mention a specific thing like “I can NOT stay on top of this laundry arg”) so it’s a casse of “Oh I just thought this might be helpful” and not “I am judging your inability to clean”.

    You: Oh, man, I’ve been cleaning up so much dog hair this week, I don’t know how one small animal sheds so much- by the way, if ever you’re having a hard time wrangling your dog’s hair, let me know, I’m a basically an expert at it now!


    Friend: Ugh, I have been having such a rough week. I’ve been a dizzy mess for days.
    You: That is all of the suck. Is there anything I can do to help? Maybe tidy up or bring you food? I know when I’m sickly the mess I inevitably make can bum me out.

    *I do consider the type of something else I’m asking for compared to the thing they offered. If they offered a ride, I might ask them to pick up a thing for me some time, since those are both delivery based tasks. If they offered to make a few phone calls for me, that does not translate into asking for a ride.

  26. Seconding this advice from the Captain: ” You don’t have to be their way of demonstrating to the world how cool and awesome and caring they are with these meaningless public displays of glurge. There are other awesome people out there, and yes it is possible for us to find them.” You also don’t need to be anyone’s native guide to the Republic of You. I have two ‘invisible’ disabilities that, if not managed well, will cause all sorts of unholy chaos in my life, and NO ONE in my circle of friends/family will ever understand them the way I have come to do. I recently decided to stop expecting anything in the way of understanding from people who can’t, don’t or won’t get it. It’s a huge, unnecessary stressor and a waste of time/energy. The Facebook ‘cheerleaders’ can say whatever the fuck they want, you are not required to provide a rebuttal or an education. Take care of you, don’t waste time on people who are that clueless unless you feel it would work.

    1. I hear you. After hearing my friends and family complain about the depressed people they knew, how they were annoying and were to be avoided for “dragging me down” and generally being uncomfortable to be around, I didn’t tell anyone when I developed severe depression myself.

  27. As both someone with chronic illnesses and someone who is friends/beloveds with people who have chronic illnesses, it was interesting to look at both sides of this.

    From a being of support perspective, I’m realizing that I’m basically useless for any physical support — doing errands, cleaning, etc. I want to be of help, but my own illnesses and personality mean I don’t follow through. However, I am a champ at witnessing, sending little reminders that people are loved, having a low-key hangout. I can be more articulate with my people about what I can do.

    From a needing support perspective, I’d definitely have to have a very close relationship to be comfortable asking someone to clean / cook / etc., much less having them suggest it. It would feel intrusive. What I most want is for people to find ways to be in touch without expecting me to leave the house very much. Thank goddess for the internet.

    I haven’t noticed anyone else talking about this, but I suspect many of us are in the boat of both having chronic stuff and supporting people with chronic stuff, and the balance of that can be tricky. I know I’m much more likely to want to help someone else than I am to ask for help, and that’s all about my own internalized ableism.

  28. I think if I were trying to help someone, instead of asking “What do you need?” I would ask “What are your biggest challenges?” No one likes to feel needy/dependent, and as soon as someone asks “what do you need,” most people either draw a blank or start wondering if what they need is too much to ask for. But, it’s always easy to call to mind all the things that are a pain in the ass (for example, my husband, who had a chronic disabling illness, had a lot of trouble driving long distances – he didn’t need someone to take him to the grocery store down the street, but he sure could have used help getting to his appointments at the university hospital in Big City on days when I couldn’t drive him), and once you know what those things are, you can decide what help you’re able to reliably offer.

  29. I’m not actually sure but I *think* I’m the LW. Hi!

    With a number of people, I resorted to telling facebook not to show me their pictures. A couple of others who I can’t get away with blocking / unfriending for Reasons, I have told facebook not to show me any of their posts.

    When I wrote this (if I did?) I was thinking of some particular people who never directly contact me (though that seems to be a family-wide problem for me, I have been tasked with putting in all of the effort to keep in touch with family and it’s considered All My Fault if I don’t speak with people for months) but who seem to have a repeated pattern of suddenly posting several memes, links and statuses about fibromyalgia in the week after they see me. Though other posters are right, these may not in fact be about me. It just very much feels like after each family event where they see that I am, to their surprise, Still Chronically And Incurably Ill they want to Do Something but instead of asking me “How can we help?” or following through on their repeated promises to visit me (which is what I ask for) they post things online until they forget again. But, yeah, other commenters are right, they may not be doing this At Me.

    Annoyingly, I’d feel more loved and supported if they actually sent the links about fibro *to me*. Just cos it could start a conversation…

    I guess my real problem here isn’t so much the facebook posts but the feeling that someone is trying to indirectly communicate with me whilst expecting me to initiate all direct communication. And I guess in the short term the only way to change that likely involves me directly communicating? And saying “Hi! Want to X at Y time and Z place?”

    1. “I have been tasked with putting in all of the effort to keep in touch with family and it’s considered All My Fault if I don’t speak with people for months”

      As far as this quote goes, I have the same dynamic in my family, so *fistbump* of solidarity. I have been helped by being very careful to see my family members as individuals and not lump them into “family,” as in my “family” thinks I don’t contact my “family” enough–because that thought stresses me out. I try to redirect each conversation toward individual relationships, one-on-one.

      For example, if Aunt A says something about how I’m not in touch with family enough, I say, “Aunt A, I call you every Sunday, do you need me to call you more often?” And she says, “no, I’m worried that you don’t call Family Member X more often.” And I say, “oh don’t worry about that, please just leave that between me and Family Member X to work out between the two of us. As long as you are happy with how often you and I are in touch, that’s all I want you and me to figure out together. And by the way, how did that recipe turn out?”

  30. This is so timely for me. I have a chronic illness that requires frequent surgeries and, in ‘active phases’, very frequent medical visits and invasive tests. I’m in an ‘active phase’ leading up to another surgery right now, and I’ve been so, so worried about how I am going to be supported in the recovery phase. Last time I had surgery, I tried to learn the lessons of my previous (traumatically unsupported) recovery, and organised the shit out of a committed team of helpers to make sure I had food, clean clothes and clean dishes for the few weeks I was bedbound. Except… Hardly any of them showed up, in the end. Or they showed up in really minor ways that barely approached the tasks they had promised to take care of. Like, it was nice of you to pop your head in and check i’m still alive but I haven’t eaten today and you were meant to bring food? It was so horrible, especially in the face of having worked so hard to organise it all and prepare these eager beavers for the reality of my helplessness. It made me feel awful things about myself, as though there was something about me that was undeserving of help.

    I live in a different city now, so none of those people are candidates for current Team Slashy, and i have some sweet friends who have offered to help, but I’m stuck imagining the horror of it all happening again. The fear of being abandoned that way in my vulnerability makes me want to try to power through alone with a freezer full of microwave meals, Fortress Slashy Needs Nobody, but that does not correspond with the reality of post-surgical life where I need help to get to the bathroom and struggle to lift my toothbrush.

    So I will be keeping a close eye on this thread, learning from the collective wisdom about how to go about procuring the help you actually need from the people who say they would like to supply it.

    1. Regarding the “how can I be sure people won’t abandon me” problem, my thought would be to be very, very blunt about how helpless you are post-surgery and how essential their help is FOLLOWED BY saying something along the lines of “I know some of the kinds of things I need help with are big asks, and I understand if you can’t do them. The most important thing to me is that I can count on you for whatever you commit to helping with.” Basically, if these are friends that you can ask for this kind of help, they should be friends you can be straight with about your past experiences and reasonable fear of being abandoned.

      1. For me by far the worst thing was people committing to something and then not only not showing up for it, but not following the “What To Do If You Can’t Show Up: A Flow-Chart” guide I had prepared for everyone who committed to helping- rather than passing the ball on, just dropping it, where the ball is me and I have been alone in a room for 3 days and am only just becoming coherent enough to realise that I am going to have to pass that ball along myself. I can forgive people for believing they will be up for something and then, on first encountering it, realising they are not up for it at all, but not having the responsibility to pass on the word that Person Needs A Meal Tonight And My Life Just Exploded, Could You Drop By Instead? is ultimately really shitty and something that damaged those friendships. I am really stuck on how to plan for it not to happen again. The only thing I can come up with is “do not ask friends to take on that responsibility”, which leaves me with either a) life-savings on a nursing service, or b) Post-surgical Patient As Desert Island: Will They Be Able To Survive The Stairs To The Kitchen And Wrestle That Microwave Door Open On Their Own?

        The social assumption (and certainly the hospital’s discharge assumption) is that this level of caretaking (the “needs a meal and someone to spot them on the way to the bathroom in case they faint” level) should be performed by partners or family members. My beliefs state that we can and should be able to source in community and in networks of friends what is normally assigned as the work of the nuclear family unit, and my friends at the time were eager subscribers of that view. And anyway, I didn’t have family or partner to ask. I dunno. Maybe the hardest thing to accept about this is that in the face of impending vulnerability, you can fill the freezer with soups, you can organise a totally kick-ass recovery-help plan based on the finest “How To Ask For And Receive Help” advice the internet has to offer, you can build in back-ups and failsafes, you can ask only your closest and most trusted friends to take on this responsibility, you can try to do everything in your power to protect yourself from vulnerability, and it can all fall apart anyway, and that is not a flaw in the planning process that can be fixed but just the truth of vulnerability, that it leaves us vulnerable to every damn thing.

        1. Slashy, this may not be available in your area, but it may just be, because it’s a business and not a social service. My mother (lives in Washington State) broke her ankle rather badly 3-4 years ago. She needed surgery and was bed-bound for a few weeks, and pretty much unable to manage her house for several more weeks. And my step-father was worse than useless, I’m sorry to say.

          We found a service that provides housecleaning and other around-the-house help. My mother didn’t actually need home nursing, not even practical nursing (which is help with sponge-baths and toileting and the like) but the service had people who could come in and do basic cleaning and cook meals and leave snacks out. One woman even mixed up cookie dough for my mom to cook herself 3 cookies at a time. In fact, once she got someone to spend the night when her husband had to be out of town, just because she felt unsafe alone in the house. (I live in California.)

          Good luck with your upcoming surgery. I’ve had major surgeries myself and I know how anxious I got when I was approaching the second one.

    2. I’m so sorry you went through this, and I don’t have a full answer. But one thing I would suggest is having a very blunt conversation with your medical providers about the level of care you can or can’t get after your surgery. It was wrong of people to bail on you, but if you don’t have someone who lives with you or a rock-solid friend who can take full responsibility for organizing other friends to care for you, you might need to arrange professional home nursing. I know insurance and money can be an issue… but maybe your medical providers can direct you in finding affordable home care. I think hospice organizations sometimes help in cases like this? I’m not sure though. Best wishes.

      1. I lived in a 6-person share house at the time, so “people who lived with me” made up the majority of the people who volunteered. They just all got really, really busy that week (with real and serious dramas, but they also didn’t call the friend down the road who had offered to be back-up- I suspect the “someone else will take care of it” groupthink dynamic was in action). Anyway, yeah, I’ve asked about in-home nursing solutions, and generally been rebuffed because the health system thinks this stuff should be done by my nonexistent family, but I suspect that I will ask harder this time around.

        1. Wow, six roommates all flaking out on you is awful, no wonder if left a mark! But yeah, “ask harder” is probably a really good idea. If you do end up relying on friends, maybe but one person “in charge?” That might avoid or mitigate the groupthink. Again, best wishes.

  31. LW, I am wondering if perhaps replying on such a post, not specifically calliing anybody out but contributing your POV to the conversation, might help? Such as, “I know that when people post these, they mean well. But I have XYZ illness, and this post doesn’t make me feel loved and supported. If you want to support somebody with XYZ illness, or any illness at all, give them a call.”

    I am very close to an aunt who has lupus. What has been very helpful to me is that she has been very matter-of-fact about what she needs and what she can and can’t do, so I know how I can help her and I feel confident doing that. It’s really hard to walk that line between being helpful and understanding, and being intrusive and annoying, or even worse, making the ill person feel disprespected or infantilized. With my aunt,I know an offer to sweep her floor would NOT be welcome. But I can wash dishes. I rarely bring her a cooked meal, b/c she is an amazing cook and also vastly prefers her own cooking. But I do bring her fresh produce, high-quality cheese, and things like that.

    It would be nice if we could instantly intuit what other people need. But we can’t. If you are ill or disabled, and a friend offers to do “anything” to help, what might work is to make a small request of them and see how they handle it.

  32. Slashy – I am so sorry that happened to you. That just sucks.

    It sounds like needing that level of help will be a regular part of your life. In that case, I don’t think it’s realistic to rely on a volunteer force. It’s one thing to help somebody in a crisis, and something else to provide frequent nursing care. It wasn’t okay for your friends to not follow through on their promises, but honestly, that was a lot to ask. Something that can be very helpful is if the person needing the help makes things as easy as possible on their caregivers. For example, if you need help going to the bathroom, then wear clothing that is very easy to manage. My bed-ridden GGM used to insist on being dressed nicely every day. Blouse, slacks, socks, shoes, etc. Well, when you have to help that person on and off the potty, button-up slacks are a HUGE pain to deal with. Plus in my GGM’s case, it was usually a matter of urgency. Also, she didn’t like to use the bedside commode. I’m sure it was embarassing for her to see us take the bowl from her bedside commode and go flush the contents. But it was so much easier on us than having to half-carry, half-drag her to the bathroom. Plus we had to clean up multiple accidents because we weren’t able to move her quickly enough. This is going to sound very cold, and I’m sure I will be flamed by other commentors. But if you are relying on volunteers to care for you, you need to set your pride and preferences aside and make things as easy as possible on them. I’m sure it made my GGM feel good to wear her nice nice button-up slacks. But it sure made me feel bad to wash her diahrea out of them yet again.

    For example, don’t schedule people to show-up with a homecooked meal, to help you potty and do a load of laundry. Freeze up individual servings of soup, so that when your helper arrives, all they need to do is take the food out of the freezer bag and put it in the microwave, then help you to the bathroom. Have enough easy, comfy clothes that your helper can just throw that t-shirt and flannel pants (or whatever), in the hamper and help you change. After bathroom and change of clothes, you can eat dinner and that person can help you back into bed, put the dishes in the dishwasher, and leave. Ideally, you should prepare in every way possible, and only rely on your volunteer caregivers for things you could not do ahead of time.

    Another thing that is very helpful are detailed lists, schedules and instructions.

  33. Slashy, your additional posts weren’t visible when I posted, so some of my comments might not make sense. Six housemates and they all fell through? That is ridiculous! I was assuming these were friends who would have to schedule a visit to help you, not people who lived with you! That’s what I get for assuming, isn’t it?

    Something that worked for us with my GGM (great-grandmother), was to hire a college student. Do you have friends who might have college-age kids? My mom had a friend whose daughter was attending a local university. It was a great solution for all involved. My mom paid the sitter $10/hr (I think). GGM couldn’t be left alone, but she didn’t need constant care, either. So the sitter could hang out, do her homework, watch TV, etc. She would frequently check on GGM, help her to the bathroom, make her lunch, etc. She made better money than she would have at most part-time jobs, while also having time to study. And my GGM recieved good care at an affordable price. Maybe that would work for you?

  34. De-lurking to say: Reading this post and comments the other day inspired me to put together a box of happy stuff and mail it to an acquaintance who was recently diagnosed with a terminal illness. Acquaintance lives too far away for me to be able to offer any tangible assistance, and I don’t know acquaintance well enough to provide a listening ear or much long-distance support. I don’t know that the box of happy stuff can do anything other than make her smile for a moment, but it felt like something that wouldn’t be actively harmful and would let her know I care on some level.

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