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.