Dear Captain Awkward:
I have had a very complex life in the last couple of years. I have gone from having a fairly normal life in regards to health and then I went on dialysis. Since that point I now have a kidney transplant.
My girlfriend currently has a really hard time wrapping her mind around the changes in lifestyle that I have to live. She almost finds my precautions somewhat unbearable.
What should I do? She also makes fun of my situation or lightheartedly jokes about it.
Unfortunately they don’t offer empathy transplants.
Was your girlfriend with you since before the changes? Because I would imagine that watching a partner go through dialysis and a kidney transplant would make it sink in that 1) Hey, you could have DIED 2) Following your doctors’ recommendations carefully is serious business. If she met you after the changes, maybe the seriousness of it hasn’t really sunk in. Which isn’t an excuse, but it gives you a place to start in deepening her perspective.
If you want to try to make things work with this person, I think there is both a Big Serious Talk to be had and some day-to-day scripts.
The daily script is, when she makes a joke, to say something like “Whoa, that really hurts my feelings.”
After you say that, be quiet, and listen to what happens next. There is going to be a very awkward moment, and it is not your job to smooth it over – the awkwardness is the way that you get to the resolution. If she stops, apologizes, and changes her behavior, that’s a good sign. If you’ve been putting up with the jokes for a while, it may take a few tries for it to sink in – you are subtly changing the “rules” of how the relationship works and some people don’t get it right away. You can openly acknowledge the rule change with “I know I usually let it go, but….” or “I know you mean that as a joke, but….” when you say things like that, it really hurts my feelings. Can we find another way to talk about x issue?”
If after saying that her jokes hurt your feelings, she doubles down on the joking, or starts justifying why it’s okay for her to make jokes that hurt your feelings, she is pressuring you to ignore your healthy routines, she calls you “too sensitive” and tells you to “toughen up,” or for whatever reason the conversation ends with you apologizing to her for bringing it up and being upset, here there be Evil Bees.
I would try that script several times before escalating to the Big Serious Talk. You will get some information about what you’re dealing with that will help you have the talk, and you’ll get some recent examples of the behavior that bugs you.
The big talk is telling her what you went through, how painful and scary it was, and why these lifestyle changes are very necessary for you, and asking her directly for her kindness and support and to lay off the hurtful jokes. There is also some asking to be done about her point of view, one way to start the talk is to maybe ask her how things are affecting her. “I know we’ve been through some changes, and I get from the jokes that you make that you’re still really processing them. I know it was hard for you to see me go through that crisis. Can you tell me a little bit about what it’s been like for you? In a perfect world, where you get everything you want, how would our relationship work? Is there a way we can make the relationship work better for both of us?”
I don’t think it’s okay for a partner to belittle you for having needs, or make jokes about your health needs, or laugh off your very real concerns and issues, and this way of opening the conversation might seem way nicer than she deserves. My reasoning is this: When you have to have a very difficult conversation, it helps to treat people as you want to be treated. You are modeling good behavior by being up front about your needs and asking her to articulate hers in the hopes that she will rise to the occasion.
In the most generous possible interpretation of her behavior maybe the jokes are her way of getting uncomfortable feelings out there that she didn’t ever feel safe to talk about when you guys were in full “gonna die, can’t talk now” mode. A drastic change in diet or energy or what activities you do does affect the other person in the relationship, not to mention being a caregiver or watching someone you love go through a huge medical crisis.Whatever happened to her during that time was definitely happening to you way more, obviously, but *something* was happening to her and maybe she needs a safe place to talk about how scared she was. If she is a new partner and wasn’t with you during the time before the transplant, maybe she doesn’t fully understand what happened and how serious it was, and needs to be told explicitly what it’s like for you.
Your health needs and not-being-belittled-by-someone-who-says-they-love-you needs trump her feelings, obviously. But the best way to figure out if this is a My Girlfriend Is Bad At Communicating vs. My Girlfriend Lacks Empathy situation is to ask outright and give her the opportunity to surprise you with doing the right thing. This talk might be a much needed way to process everything together and find a way forward. If it goes well, consider seeing a couples counselor where you can have an ongoing conversation about this and really work on communication.
Sadly, it may be the time you find out that you guys are really not on the same page. Maybe the changes in your lifestyle really are “unbearable” for your girlfriend. That is something she gets to decide, and she gets to leave and seek another partner. But she doesn’t get to hang around and be mean to you. If you open up and she makes fun of you, laughs it off, and keeps going with the jokes, realize that there are people out there who won’t treat you this way. And if she for one second implies that “someone in your condition” is lucky to have her and that you won’t be able to find anyone else, run (or wheel yourself, or crawl) for the nearest exit. That is a big, bad sign that she is emotionally abusing you, and that is 100% never okay.
CaptainAwkward.com 
for whatever reason the conversation ends with you apologizing to her for bringing it up and being upset, here there be Evil Bees.
Yes, this. I feel like this could be a relationship corollary of that “money flows toward the writer” axiom–apologies flow toward the person who was hurt. You don’t let a publisher convince you to pay for publication, and you don’t let a person convince you that you should apologize for talking about your hurt.
It could be that LW’s girlfriend is doing the “gallows humor” thing, the way people with serious diseases often make light of their own conditions, and doesn’t realize that it isn’t her prerogative to do this about someone else’s condition. But it doesn’t really matter why she’s doing this–all that matters is whether she’s willing to stop immediately, completely, and without protest as soon as she finds out it’s hurtful to her partner.
I’m trying to think of gallows humor that works – for example, a friend of mine has a serious autoimmune condition and her body is actively trying to kill her. When she was complaining about the time she spends de-mildewing the jets on her whirlpool tub, my other friend and I were like ‘Oh god, hire a cleaning person, please don’t spend the precious remaining moments of your life trying to solve mildew. Look, here’s a phone number.” And we all laughed, and then I cried a little, because it was true. But also both funny and sad in the right way, like, everyone is in on the joke.
Right, everyone in on the joke. My grandmother once had an arterial fistula blow, which meant A LOT of blood. I called 911 and went with her in the ambulance. A week later when she was safe at home in her brand new replacement recliner and in okay spirits, I sat down next to her and said, “Grandma, we all know how much you love your murder mysteries. But for your next health crisis could you try to pick something that looks less like a crime scene?” She and the whole family laughed, because we needed the release, and it was gentle teasing about one of her favorite hobbies.
But it would not have worked while she was still in the hospital and it would not have been right to joke about the possibility of this happening before it had.
*offers you a fistbump* Last year my father had surgery for prostate cancer; a few days later he collapsed at home with blood clots in his lungs, and had to be flown to a hospital an hour away.
When he was home again, my brother said “Dad, if you’d wanted a helicopter ride, all you had to do was ask!”
I tend very much towards gallows humor — my life has been stressful, my family is weird and stressful, there’s never enough money, so black humor is part of my standard repertoire of coping mechanisms, along with procrastination, oversharing, and other highly functional things. I have to make light of my problems or they will overwhelm me. And it’s been a real problem between me and my boyfriend over the years, because he also struggles with a completely different set of issues, and he’s also very sensitive to anything that reads as teasing.
One thing that’s come up recently as we’ve tried to debug our relationship is how crucial the sort of relationship headspace thing is. Right now, LW is very sensitive to their girlfriend’s jokes, and their girlfriend is very much failing to be “in on it together” with them. Even if the girlfriend said something that was totally hilarious and effective as humor, the LW might not be able to get the joke, because of the girlfriend’s history of (perceived) insensitivity. Even if LW’s girlfriend isn’t trying to belittle them, it’s getting read that way, and that needs to stop and get dealt with.
The first step is definitely to bring up the fact that it’s hurtful when it happens. And be open to whatever weird reaction she has and not read too much into it (mine tends to be fairly unhelpful — either I continue to be ironic/defensive, or I actually feel for the person and feel awful and burst into tears). If she actually means well, LW’s honesty should lead to some conversations that actually help improve things. Not necessarily right away, not necessarily perfectly, but progress-type stuff.
And if she doesn’t mean well, my advice is to run away.
I love humor about Problematic/Scary Things when it’s not enforcing the status quo. (Most of it does.) I think it’s similar to the Rape Joke That Works (which isn’t always funny and doesn’t always work.) The example that I actually found funny was that famous Wanda Sykes skit talking about how she wished she could leave her ladyparts at home, so that if a man jumped out of the bushes she could say “Nuh-uh, I left mine at home!” There are some people who will say “Oh man, that’s not funny because rape jokes are never funny!” and some people who will say “Detachable ladybits for everyone!” But it’s not humor at the expense of the victim; it’s humor about the fear. Humor at the expense of the victim isn’t even funny or satisfying – it’s meant to humiliate, to put them back in their place and keep them there. Humor about the fear might take away the power that the fear has – or in this case it might get you to examine that society actually considers it a provocation to walk around with your ladybits attached.
Notably, most “edgy” humor is at the expense of people who are already kept pretty low on the ground. You never see those comedians attacking people who are bigger than them.
Sometimes the only thing you can do with your dying friend is laugh about the death so that you’re not just sitting there crying at each other. But there is no universe in which Seth McFarlane is funny or helpful.
I was about to make that exact same corollary re: The victim is never the butt of the joke.
I come from a long line of gallows humor. We’re a bunch of emotionally repressed Irish-Americans whose primary mode of communication is sarcasm. Several of my immediate family members have serious and deadly chronic medical conditions, and we’ve always just made it through by making inappropriate jokes.
I think, in some ways, that the point of gallows humor is to make the disease/whatever be the butt of the joke in such a way that it becomes a shared enemy. Nothing brings two people together quite like having a shared enemy, so banding together to fight the disease with humor is a way of showing solidarity.
Teasing a person because of their health problems is a way of showing that you’re a bullying D-bag.
Big difference.
Absolutely. I’ve forgotten where I’ve heard this quote, but I think it’s apt: “Gallows humor is not the hangman’s humor.” If your joke is all about demeaning someone who’s already hurting or disadvantaged, that’s not “dark humor,” it’s just plain old being an asshole.
The classic example — the one that I think actually gives gallows humor its name — is the condemned man kicking his boots off as he steps up to the noose, because his friends always said he’d die with them on. (I guess that’s not a common expression these days. He’d die standing up and fighting, rather than old and in bed.)
Gallows humor ABOUT YOURSELF, or about a friend who gets it and truly doesn’t mind, is fine. But if someone tells you to knock it off, you knock it the fuck off.
I have fibromyalgia, which was diagnosed about halfway through my six year relationship with my ex. I went from a cute, basically healthy (if mentally not so much), slim 25yo me when we met to a significantly fatter, walking stick using, scared of losing my job late 20s me. He did not cope well. He made comments about how I shouldn’t use the st ick because when he had [ completely different health problem involving muscle damage] he was told not to use one as it would weaken his leg. He bitched about my weight gain. He made “jokes” about various things that weren’t actually funny. I thought I couldn’t find anyone else, being fat, disabled, and full of head squirrels. I don’t think he ever explicitly said I’d never find anyone else, but when I eventually broke up with him ( not just about this, but it was certainly part of it, mostly I just… didn’t love him any more, I didn’t realise how hurtful and unsupportive he was until I had a bit of distance) her certainly implied it, repeatedly asking in FEELINGSCALLS whether my friends/ family thought I was wrong to break up.
A few years later, and I’ve been with someone great ( for some of that time, two someones, in a poly sort of way) for, well, most of that time. They treat me with kindness and respect, and it’s wonderful. But more importantly, I know full well that even if I’d been single the whole time, I’d still be happier, not because my ex was an awful person (I think he’s a decent sort, he just had no idea how to deal with my illness) but because his behaviour was making me unhappy, and I wasn’t well enough to put in the effort to try to convince him to change his behavior, which is often a losing battle anyway.
(I just want to add, I’m not saying the lw ought to break up, or anything like that – just that if it comes to that, it’s not so bad.)
Just wanted to say: I, too, have fibromyalgia. And it *was* a major factor in my recent divorce. And I didn’t realize until I moved back to my parents’ home, just how much of myself I’d lost or repressed. And how much emotional abuse I’d put up with. I cried overwhelmed/happy tears about 3 days ago when my father said to me “I believe you. And you can stay here as long as you want.” I think anyone with an invisible illness knows how great it is to simply be believed. I hope not to be alone for the rest of my life – and certainly not in my parents’ home! – but I am happier in nearly every way for having gotten the divorce. It’s not what anyone hopes for, but then again, sometimes it’s worth it for your own mental health.
Hey LW, I’m sorry to hear about your kidney trouble. I know anything involving an organ transplant is a long trip, riddled with worries.
As you might know, there are support groups for different conditions. Some offer Next of kin-type advice, where your girlfriend can talk to others in her shoes. I suspect that other people who love new-kidney-people can bring something to your GF’s table of knowledge. They might also be better abled to handle some of her comments that rightfully upset you, and set her straight. As much as you the LW try to explain, you can’t really give her your experience.
As for me, I have a heart thing. I’m nowhere near needing a new heart, but it’s still a Big Scary Thing. What I did for the people close to me who wanted to know stuff is I found a PDF about my diagnosis that’s basically a F.A.Q. I e-mailed it to my friends & family. Then I said that if they want to know more they can look at this thing called Internet. Currently, I don’t have the patience to tackle any potential stupid-worded-but-wellmeaning-comments. That’s me, you might be willing to educate your GF. Great! However, I want to stress that you don’t have to. And I don’t think you’re automagically the best person to do it, because she says things (whether she means to or not) that hurts you. Sometimes it’s easier to get scary info from a third party, whether that is Google, a doctor, or a support group. Or she could do all three, in which case it would be a Kinderegg Surprise. Of surgery and horror.
But also, how great is it that you got a new kidney? SO great!
I think that it is great to point out that the place that the LW’s girlfriend should process her feelings & get emotional support and information about his condition might be Away From the LW. Maybe the relationship has become very focused on How Are We Caring For Your Illness Today, My Dear? and that’s a good way to take pressure off and refocus things.
Speaking of drawing boundaries with friends. I recently had to have a talk with a friend who started to call or text 2-3 times a day asking if I was any better yet. When confronted, he answered: “Well, I just hoped you’d be miraculously better by now.”
Way to make me feel better, pal.
Tremendous advice Captain. Just want to agree that people can find it very hard to cope with other people’s illnesses. (Not an excuse, but a Thing.) Often it’s about not wanting to think about ill health at all, ‘cos that involves realising one’s own vulnerability. Or blaming the illness on the ill person, because then getting ill was Their Fault and I won’t get ill because I do things differently.
It’s upsetting to find one’s nearest and dearest are like this, but they very often are. I think it’s one of those crutches people use to get through life without thinking about how tiny and weak human beings are. Again, no excuse, but people need to find maturity and reflectiveness to get over it. Not everyone can do this.
On the other hand, one of my dearest friends, who has a horror of anything sickness-related, has managed to be a huge support to me and asks and listens sympathetically. She never made me feel bad about being ill, she was just up front about her own difficulties.
Even people who cope with vulnerability better can still be angry with the ill person for making life difficult, and for making them sad about the person’s suffering. I feel it about other people; other people feel it about me. Once you recognise it, you can practice not feeling sad so often. You can’t sustain the rush of pain and compassion you get when a loved one falls over and has an ouchie. You have to keep that for the worst times, and work out a different way of being supportive for everyday suffering. Sympathy doesn’t have to mean feeling bad yourself: it means treating someone how you would like to be treated.
It can be helpful to expect dodgy feelings, to deal with them as the Captain advises, and to thank your lucky stars when you find somebody with the right attitude. For me the right attitude is, ‘sometimes feels this way, doesn’t want to, can learn how not to take it out on me with a little mutual help and understanding.’
You can’t sustain the rush of pain and compassion you get when a loved one falls over and has an ouchie. You have to keep that for the worst times, and work out a different way of being supportive for everyday suffering.
I wasn’t dismissive about my boyfriend’s severe health problems, but I knew I couldn’t spend every moment feeling awful about how awful he felt either. So I put shields up. He’s tells me how much pain he’s in? SHIELDS and sympathetic nods. He talks at length about what he needs me to do for him, but shuts me down when I attempt to chat because he doesn’t have spoons to waste on regular conversation? SHIELDS and think about something else.
Turns out that years of throwing up SHIELDS doesn’t do a relationship any good. I don’t know how to be loving toward the person I’m continually having to protect myself from, and it doesn’t matter that a lot of that isn’t his fault. And my shields are breaking down. I can’t get seem to get through the day without snapping at him for needing things.
tl;dr: How do you keep yourself emotionally safe without building a huge and possibly permanent wall between you and the person you’re caring for?
Difficult one, and this is why it’s so shitty that most disabled people’s caregivers are either lovers, parents or children – people with whom we ought to be able to just have relationships, goddamnit*! Is there any way you could find some sort of respite care for a few days, either so you could have a bit of a break, or so the two of you could be together with less pressure from both his health problems and the fact that you’re probably pretty bloody tired yourself? (And, assuming that like most people in that situation, no, it’s not possible, I’m sorry, that sucks.) I guess beyond that, you both need to find ways to make sure both of you are getting at least some good out of each other. I can fully understand his being too exhausted for chatting, but that doesn’t make it any less hurtful to you.
*and vice versa, in case that’s not clear! It sucks in all directions.
Ahhh, respite care. We’ve had people come in to help during the day so that I could at least work uninterrupted. There hasn’t been anyone in a long time, though. Hard to find anyone who’s qualified, much less retain them. The problem isn’t the work, which a lot of people can do. The problem is all the accommodations, which most people can’t or won’t do.
We may now be able to get help getting help. Here’s hoping that pans out.
It won’t help my boyfriend and me have real conversations, though. He’ll be more stressed by having somebody in the house who isn’t me, which results in less ability to talk to me.
I’m a caregiver myself, and this feeling is pretty common, so please give yourself some slack for feeling like a human being. One of the things I’ve learned in caregiver support groups (which are really helpful and I recommend them), is that often those being cared for don’t want outside help, or either from their loved ones. They want a magic third alternative that means they get better and can care for themselves. And who wouldn’t?
And so they become resistant to having outside help because it’s one level further down from not caring for themselves and how much independence they are losing. So family members/loved ones try to meet this need, and it’s overwhelming and exhausting. I’ve seen this many times in my group, where it becomes an unsustainable program that exhausts, overwhelms, and shuts the caregiver down. I periodically go through this myself.
I’ve overcome shutting down by making sure I have an active social life. That’s not to say that I’m out every night (or even every weekend), but I’ve learned that if I don’t have a break/some social interaction periodically, and all I do is go to work and take care of someone, not only do I shut down, but I feel like I’m losing my sense of who I am, drowning in caregiving. Also, I’ve learned that my partner needs a social life, and to feel like there is an outside world, so sometimes we have friends over for dinner, so we both get social interaction, but save some energy by having social life come to us.
I hope you get the help to get help. Depending on your situation and where you are, you might look at getting a social worker involved. Social workers’ jobs in these situations are often to make sure everyone is still talking to one another and getting their needs met. If boyfriend shuts you out because you need help, a social worker can assist in developing ways to communicate without shutting down.
Jedi hugs if you want them.
Thanks. I’ll take the Jedi hugs. 🙂
I think the first part is recognising that you need to keep yourself emotionally safe from someone else and acknowledging that that is a problem.
I had an anxiety disorder during my last relationship and I had to shield myself from my partner a lot. He had no idea how to deal with my anxiety and did not want to acknowledge that my needs were changing (which made the conversations I started about how I needed different things very awkward). He was actually very pro-nothing changing ever. He dominated our time together with his interests and would change the topic of conversation over to him as often as possible, and so I think that you and I have a bit in common with our partners needing a lot of them-time and not being sympathetic to us-time.
I left that relationship. It was unhealthy and I could not deal with it. However, before I left we had a lot of talks where I explicitly said “You can’t keep doing this. That thing you just did where you asked me how my day was and then cut me off and spent an hour talking about me about your day? That was not cool. This is unbalanced and I am not happy. What do you think we can do to change this?”
We did try some things. I moved out because I thought that us not spending all of our time together would help shake out the bad relationship habits we’d fallen into. We were having date nights once a week so we were doing things together and that was shared time – neither of us were allowed to dominate it and we had the very delicate code of “I’m sorry but this is boring me, can we talk about something else?” to help change topics. If he didn’t have the spoons to have a non-him conversation then I would leave and tell him to call me when he had the energy to catch up (and I did the same thing – if I knew I was going to be down and anxious I would cancel plans and reschedule for a few days later because I knew that us hanging out when I was in that place would not be a good time for anyone).
It sounds like your shields are breaking down because you’re not getting what you need from this relationship. If you are his carer (since you mentioned caring for him) I think you should look into not being his carer. If you’re not his carer and are instead a person who cares about him, then look into ways that you can stop falling into this carer role. He has needs and it’s important for you to respect them and take them seriously, but maybe you two can talk about which of these needs you’re taking responsibility for and if that’s really the best idea, and also open up a conversation about your needs. You are important in this relationship, too.
Ugh, I’m sorry you had to go through that. Even if you’d been anxiety-free the whole time, your ex’s “me me me” attitude wouldn’t have been fun to put up with.
At the moment, there is no way that I can stop being my boyfriend’s carer. Believe me, if I could, I would just do that. 🙂 In the meantime, yeah, my needs are important too, and I advocate for them in both healthy and unhealthy ways. But if my need is “I need to work uninterrupted” and his need is “I need to eat something or I will die,” he’s gonna win.
Are there any support groups for carers in your area? Would having a space where it’s OK to be cross and fed up and talk about how difficult it is be useful for you?
I looked into support groups a few years ago, and nothing came of it because … I don’t remember why. But I do have friends who listen to me vent.
Many sympathies. As tawg says, you could try talking more about what your needs are, and that you expect him to make an effort to meet them – if you’re not meeting at least some of each others’ needs, how much of a relationship is it?
If he can’t interact with you because his health situation is so bad, maybe he needs more medical support or external care? I know finding support is hard, but sometimes the sick person needs a push to seek help, especially if they’re low on spoons. I started to think of not being able to move, eat, carry things or speak a lot of the time as normal, and expected others to fit in around it. My partner started shutting off from me. So I called him on it, and then he called me on treating him like a carer. He said it wasn’t normal to suffer so much without proper medical support. I was lucky that I had just enough spoons to push for better medical care, impelled by fear of losing him. (Although at the time, I whined and cried and thought of every reason I could to avoid facing the offhand cruelty of doctors again).
I got useful help eventually, and I made adjustments so that he got more of my spoons. I tried to have some times where I was as upbeat and functional as I could be for him, despite the physical cost. But if I hadn’t known that I was losing him, I might not have done these things.
Rather than always shields, is it possible for you to sometimes be more open about your feelings? E.g. he says he’s in lots of pain, you express sympathy and then say, ‘It breaks me up that you’re suffering like this, I need a hug or at least a pat.’ It might help him see that he can meet your needs, even if he feels he can’t do much. But again many sympathies, it’s hard hard hard.
It had to have helped that you noticed your partner was shutting down. Mine didn’t, at least not until it got to extreme levels.
Thanks for the sympathy. Compassion fatigue has gotten so bad for me that it doesn’t break me up to see him suffering. I’m just numb.
Your comment plus screen name make me really sad. On the one hand, you say you have to give a lot from a relationship that isn’t giving back to you, and on the other, you seem to be criticizing yourself for having the same limits and frailties that every other caregiver has. And it sounds like you’ve been doing this caregiving without the benefits of someone who does it professionally: pay, limited hours, professional training, relief staff, or the ability to pursue a personal relationship that does restore you…
The question of “How do I give of myself more selflessly to a person who ‘can’t’ give anything to me?” is kind of a non-starter. “How do I get my personal needs met so I’m not a horrible caretaker?” is as far as I’d put it.
Back when I chose “Bad Caregiver” as my all-purpose “Anonymous for This Chronic-Illness-Related Comment” handle, I did it for two reasons. One, because I’m ill suited to caregiving. My domestic skills are crap, and I lack the kinds of nurturing tendencies that I imagine would make someone a good caregiver. I knew this about myself before I had these responsibilities and it didn’t bother me. I just wouldn’t have kids, right? Ha ha.
The other reason was because people have a knee-jerk reaction to the word “caregiver,” which they equate with sainthood. The handle lowers their expectations. 🙂 Maybe I should’ve chosen something that wouldn’t make people feel like they need to assure me that I’m not bad, but I keep it for consistency. I’m sorry it made you sad.
Anyway. I do have a social life and outside interests to pursue. But the relationship is kinda broken (for lots of reasons; I’ve got a letter of my own in the queue), and it needs fixing regardless of whether my other personal needs are met.
Seconded. One of the things I’ve learned recently is that we can fall into habits where we label our behavior as “bad” and then get stuck thinking of ourselves as deficient when we’re doing as best we can. I know I fall into this trap, where self-labeling my own unhelpful thinking patterns as “bad thinking” can escalate into making me think I’m bad at life or a bad person. Whereas the truth isn’t that my thoughts were bad, just incorrect. It’s a factual distinction, not a moral one.
It sounds to me like you’re not a “bad” caregiver, but someone who is having a difficult time in a role you didn’t exactly choose. You’re allowed to struggle. You say you feel numb, but the fact that you’re still there at all shows dedication and ongoing effort. At the very least, if you can, I’d suggest trying not to use the “bad” label–when it sounds to me like you’re an accidental caregiver, continuing to care-give despite a challenging situation.
All caregivers are accidental caregivers. Even if you choose to take on the role with much deliberation, you probably didn’t include it in your original life plan.
If my boyfriend were the one writing in about our situation, everybody would tell him that he deserves better, and that I need to be nicer to him. Rarely does a day go by where I don’t snap at him for asking me for something. Maybe that makes me a flawed human being in a difficult situation rather than “bad,” but again, I can’t stand the idea of people assuming I’m some kind of saint because of the caregiver label.
You may be your partner’s primary caregiver, but you’re also his partner and therefore you get to have needs regarding the relationship, too. A relationship cannot be all about one person all the time and survive, no matter what the circumstances.
I’m not saying you should expect him to do things that he’s not capable of doing, but surely there’s something you guys can work out regarding getting YOUR needs met as well as his (it’s hard to know what that might be without knowing the specific circumstances). It really sounds like you’re not getting anything out of this relationship at all right now, and that’s not fair to you.
Personal anecdote ahoy: my partner’s father died a couple of years ago, entirely unexpectedly. Handling that was rough–my partner would withdraw for days at a time, snapping at me if I tried to start conversation and then complaining later that I hadn’t been paying attention when they were trying to talk to me. I tried just dealing with it for a while, but eventually I felt so unloved and unwanted that I just had a breakdown. I still feel kind of bad about that, but not because I had needs; everyone has needs. What I should’ve done was express those needs BEFORE I got to the point of breaking down, but I didn’t because I felt like having needs at all was selfish and horrible of me.
Easier said than done, eh? Even if you’d realized that having needs isn’t selfish and horrible, you’d have felt awkward about expressing them. Look how much Partner is suffering! Surely I can suck it up ’til things get better. Which is a viable solution until it’s not.
You shouldn’t have felt bad about having needs, but you also shouldn’t feel bad now about how things shook out. Having a breakdown is what it took to convince you that you weren’t being selfish. Now you won’t need to have another one if a similar situation comes up.
Hey, Bad Caregiver:
If somehow you found a social worker that could help you find a facility or a network of in-home caregivers that could take your partner on and you know he’d be 100% cared for – medically, physically –
would you stay? Would you be psyched to be partners and spend time together? Would some of your needs get met?
There are people who are not the partners they might be because they are sick and it takes so much energy to manage the medical conditions and there are people who are a bad fit for you *AND* they are sick. Which one is this?
I know it feels cruel and selfish, but you sound to me like someone who is done being a caregiver to this particular person.
Boyfriend would be able to meet more of my needs for sure, but it still might not work out. And that’s OK. Many relationships have an end date. The ones that are meant to end don’t magically become eternal when one partner gets sick. Further, I’m fine with demanding that he not make me his sole source of caregiving. But man, I don’t ever want to be the person who leaves BECAUSE the partner is sick.
So … I don’t know. I’ve spent the last couple of years trying to figure it out. When I wrote a letter a while back re “how do we communicate about specific relationship problem when he’s so sick,” I avoided the “should I stay or should I go” part because ultimately, that’s unanswerable by anybody but me. I’m working on it. 🙂
P.S. Thanks for the support. No matter how much I believe on an intellectual level that it’s OK to contemplate breaking up, it’s still nice to hear it from somebody else.
I think everything you’ve said suggests that, if you were to leave, it wouldn’t be because he is sick – it would be because he had proved unable to give you what you need from the relationship. Many Jedi hugs and hope things improve soon.
Hi LW,
I feel for you, my dad had a heart transplant in the early 80s and a lot of what I remember of my childhood is centered around his decline into illness, transplant, management of post-transplant life and the terrifying uncertainty in all of those pieces. I was only a little kid but I can say in retrospect that my mom was an incredibly grounded caregiver. It’s not clear from your letter how much your girlfriend has been involved in that process, but I can tell you that it is a harrowing experience to be nearby as someone you care about is suffering. Being around someone who is or has been ill is scary because of your love for them, but also because it forces you to deal with heavy issues around life and death that a lot of people would like to avoid or put off.
To be frank, your girlfriend may or may not be able to handle it. It sound like she hasn’t yet processed that your lifestyle changes are permanent. I remember talking to my dad and asking when x or y was going to be fixed by the doctors and he said, “This may be the way it is.” For a long time, I was truly unable to understand that certain things were unfixable.
I agree with the Captain that you owe each other a serious conversation about how things are going to be and what you need from her. There might also be things she needs from you (Time off from talking about your health? More focus on what’s happening in her life?).
Sending well-wishes and good luck!
LW, as the daughter of a man who had not one but TWO kidney transplants, congratulations! The transplants made a huge improvement in the quality of life for him, and I hope yours does the same.
He was also young (28) when he first got sick, needed dialysis, and the subsequent transplant. It’s a huge adjustment! Medication, diet, side effects, everyone being fixated on how you feel, having blood drawn constantly, how much are you peeing btw??? It’s a lot, none of which is “supposed” to happen to a young, fit person. So I can accept the possibility that your gf is overwhelmed and coping poorly.
However. The precautions you now have to take in your life are needs. They are non-negotiable, And you deserve people in your life who treat them as such. You’re not being immunocompromised AT your gf, after all.
Good luck, LW. I hope your transplant is the life changer for you that it was for my dad, and my family.
The relationship is over. Face that. She didn’t sign up to be with someone with kidney problems.
Some partners can handle life changing illnesses in their significant others, most cannot. They may stick around, but its over. Has to be.
Sorry if this is too straight from the shoulder but all that ‘talk itout’ stuff rarely works in my experience, the change in feelings is visceral.
I kind of think that’s for the LW and/or his girlfriend to decide. What are you expecting the LW to do with this “information”, go to his girlfriend and say “you’ve already broken up with me in your mind, haven’t you?” Because that’s pretty manipulative, really, in most cases – there might be some where one says it because one knows it’ll be a blessed relief to one’s partner, but I’d say it’s far more commonly said with desperate hope of reassurance that “no, everything’s fine, I’d never leave you!”
(Nothing that says the OP is a he!)
oops, fair point!
Glad you could stop by. Don’t let the door hit you on the way out.
I am truly sorry that your personal experiences have led you to this pessimistic conclusion.
I’m fairly sure she didn’t sign up to be someone with kidney problems, either.
Yes, sometimes chronic illness or disability can break a relationship, but it doesn’t always. Not even when the non-disabled person’s friends and relatives are all telling them “you didn’t sign up for this, you should get out rather than tying yourself to this person and their needs.”
As a caregiver to someone, who, after about nine years together, developed a chronic illness, I’d like to say that, yes, it’s been hard. Hard-scarey hard hard hard. However, I also feel that it’s made us closer. We have to look at some pretty hard issues directly and honestly, together, and yes, that can change someone. But it doesn’t mean it’s for the worst. It just means we love one another and we do what we have to do, and we just constantly figure it out as we go along.
I think when things get hard, yes, some people break up. And some people pull together. What made us stay together? Well, simply, loving one another and making our relationship work was a priority for both of us.
‘Sorry if this is too straight from the shoulder but all that ‘talk itout’ stuff rarely works in my experience, the change in feelings is visceral.’
Ah, well. If it works so rarely, then I guess the answer is to give up at the first sign of trouble, and to never wonder what might have happened if you’d summoned the courage to be open, honest and vulnerable.
Seriously, what is there to lose by having a conversation? Worst case scenario is that is leads to a breakup. Your plan is that the LW should protect themself from that unpleasant possibility by… proceeding directly to the breakup? What?
JumeiraJames, you might be right. The relationship might be over.
However, sorry if this is too straight from the shoulder for you, but your comment about people always leaving when their partners get sick really rubbed me really the wrong way. I mean, good job validating the fears of every person who gets sick – “Everyone will leave me alone.”
You won’t be commenting here anymore. No need to have a big talk.
Thank you, Captain. As someone with a longtime chronic illness, I worried about that a lot when I was single. Luckily, my partner has stuck by me when things got worse, and then better, unlike a close family member who hates illness and avoided me when I got sick as a young child. He and James should go bowling.
Seconding the thanks for this. This comment section is normally so supportive and awesome, it’s like a splash of ice water to see the… as you say, validation of the worst fear of pretty much anyone who gets diagnosed with a chronic illness, of body or mind.
(Also? It’s really, really not true. There are plenty of couples who go through changes like that with initial issues, and eventually manage to communicate and get through them. Some people don’t, but a freaking LOT of people do.)
Right, because it’s going to come to most of us in the end, if we’re in a relationship when we get old and frail – there is no magic get-out of supporting other people’s health issues, unless you also keep yourself out of relationships.
People get in relationships because being with the other person makes them happier. Not every single minute of every single day; there is give and take in healthy relationships where you support each other through the bumps and scrapes of daily life, because on the whole, taken over the larger period of the relationship, you know you’re better off. The bumps and scrapes can even be BIG bumps and scrapes, and as long as there’s a sense of balance, that “we’re in this together,” and “I’d rather be with this person in hard times than go through easy times without him/her,” you’re still good.
It’s tough when, due to a major injury/illness, one of you becomes Not Much Fun (and your life together honestly kind of sucks) for an extended period — especially if you haven’t been together long enough before that to have banked plenty of Happier Together to weigh against the suckitude and make the person who is suffering only vicariously still be sure that yup, on the whole they’re better off with the sick person in their life.
It’s possible your girlfriend is feeling sort of cosmically ill-used. She finds this great partner, then blam! you get not just sick but really, really sick, and even though you get better you don’t quite get easy and normal again, and while she doesn’t want to be one of those horrible people who dump their partner when they get seriously ill, she’s not having any fun. Yet she knows it’d be stupid and selfish and wrong to get mad at you for being sick, because (duh!) this wasn’t your choice and it is hardly your idea of a good time, either. So her resentment at the situation leaks out in “jokes” that are more hurtful than funny.
I guess what I’m saying is that I think the Captain is right — the fact that your gf is making these jokes does not mean she is hopelessly self-centered and insensitive, much less cruel. Your condition/experience has affected her. Not as much as you, by any means, but still, it has affected her day-to-day pleasure and happiness significantly, changing the terms of the deal she she thought she had with you — and while you had literally no choice about it, it was completely thrust upon you, to some extent all she had to do to get away from all this was to walk. And she hasn’t.
On the one hand, you probably should have some conversations about what she/you can expect from here on out, to the extent the doctors can predict. She has to decide whether the package deal that is you is something she wants. While it’ll suck if she says “actually, I’m afraid that the things that I think are wonderful about you are outweighed by the things that are now a pain in the butt about you,” if that’s how she feels, that’s how she feels and you may as find out.
But you also have every right to tell her, as the Captain says, that it is not ok for her to express her frustration with the situation in ways that are hurtful. If she does want to be with you, she needs to find ways to process her own feelings that do not involve making you feel even worse.
“She finds this great partner, then blam! you get not just sick but really, really sick, and even though you get better you don’t quite get easy and normal again, and while she doesn’t want to be one of those horrible people who dump their partner when they get seriously ill, she’s not having any fun.”
It’s a little like people who don’t want to break up with someone near Christmas. And then it’s New Years Eve, and you don’t want to be alone, and anyway, breaking up now is unheard of! Then before you know it it’s Valentine’s day and splitting up now would just be plain cruel.
When all this time spent together, means losing the chance to find someone who you click with. Every person has something that they’re scared of disclosing when you first start dating. And hopefully everyone has a match that doesn’t see that scary thing as a big deal. The LW doesn’t have a choice in his or her lifestyle. But they can decide to leave if they want to.
And not only that, it’s pretty much impossible not to feel like a jerk if you’re the one walking away from a sick partner. If you stay, you can get pity from friends and strangers: Oh, you’re so strong, you’re persevering and trying to help your partner! If you dump them, there’s a lot of “Can you believe how insensitive she is! What an awful person!” that’s going to be buzzing around your head. I’d imagine that complicates things a lot, on all sides.
I had a similar experience in my first and only relationship so far, freshman year of college, when my then-boyfriend’s father died. I’d already been uncertain about the relationship; the emotional aftermath of his loss both made him even harder for me to deal with and made me feel like I should not break up with him when he’s still actively grieving. That added to my personal neuroses of “but I like having a boyfriend + cuddles +etc., what if after we break up I become perpetually single again like I was before and it’ll be sad” meant that I waffled for a REALLY long time about the breakup – which actually made things a lot more painful for him, too, because he had to deal with my uncertainty AND I wasn’t that great at being supportive because I sometimes lost my patience because the relationship wasn’t working the way I wanted it to.
And still I find it hard to tell myself “you should have just broken up regardless of his grief” because I don’t know what would have happened and it just seems unimaginable. Even when we broke up I was his main support for a while… so maybe it wouldn’t have really been different.
Thank you so much for this post. It lays out what exactly went wrong when my ex got more and more ill and how I didn’t cope well.
“I’d rather be with this person in hard times than go through easy times without him/her” – that was no longer true, and it took a long time to admit it. “She needs to find ways to process her own feelings that do not involve making you feel even worse” – very true, and anything less was not fair to my ex.
And yet you have compassion for the gf in this situation, when I had a horrible time feeling that way about myself.
Hey LW,
I’m disabled, and so is my wife. We were disabled when we met, though I wasn’t diagnosed, just in a shitload of apparently causeless and terrifying pain. I got diagnosed close to a year after we started living together. Needless to say, for two people who basically have a physical situation for every letter of the alphabet between us, we joke about it, and they’d be deeply unfunny if I decided to unleash them at Random Disabled Person instead of someone who knows that I cope by making bad puns and indulging in gallows humour. But that’s precisely the point: that’s the rules of our relationship, the framework we both know and deal with. It doesn’t sound like your girlfriend checked in with you about what’s okay to joke about and what isn’t. I sure as fuck wouldn’t like it if an able-bodied person made the jokes about me that my wife does. You don’t have to like it either. And you have every right – EVERY RIGHT – TO SAY SO.
Yes, it’ll probably hurt her feelings. But there’s three options in this:
a) she’s coping using humour and thinks you don’t mind
b) she’s laughing at you and thinks you don’t mind her using humour that way
c) she’s laughing at you and doesn’t care if you mind or not.
Now, if it’s a), telling her she’s hurting you will make her feel bad, but I’m sure she’d rather feel bad about hurting you for X months than for X years. If it’s b), ditto. If it’s c) then don’t give a flying fuck about her feelings, because she’s not giving any about yours. As commenters above said, it might take time to change it, but DO keep an eye on her reaction – the actual reaction, not what she promises/claims/debates she’ll do.
I agree with the Captain on the script, and on giving your gf the benefit of the doubt. But if things don’t go well, remember that you deserve someone who isn’t going to resent you for getting ill, or make your physical obstacles about them. I’ve been on both sides of this. I’ve been the very ill person who had to make tough decisions and changes. I’ve been the bystander watching a loved one go through hell. Each is miserable in its own way. Neither is a reason to become a self-involved jackass.
I just want to thank the Captain for that last paragraph. There have been so many times in my life that someone has tried to convince me to put up with their shit because “someone like you* should expect to be treated like this” and I’ve believed them for a time and invariably their awful behaviour has got worse and worse and I’ve subsequently found people who, to my surprise, are entirely capable of treating me with respect.
I needed that reminder. Thank you.
* (In my case this has meant: disabled / mentally ill / trans / queer / a child / only white kid in the school / vegetarian / ugly etc)
Someone like you deserves to be treated with love and respect, with caring and support, with delight at seeing your face and joy if you care to smile. That’s how someone just exactly like you — so much like you that they might as well be you! — should be treated.
I love you so hard for this comment, carbonatedwit. That is *gold*, right there.
So much word. So, so much.
That comment right there actually made me tear up just now. Very timely, thank you.
Basically seconding most of what’s been said upthread (and, as usual, the Captain’s excellent reply.) If your partner is not willing to listen to and treat seriously “Hey, that ‘lighthearted commentary’ of yours is really upsetting for me,” then it seems like it’s probably time to reevaluate the relationship. I say this as someone with a partner with a chronic illness, who has had to make drastic lifestyle adjustments in order to somewhat manage hir illness, and has in the past had people, including other partners be COMPLETE DOUCHEBAGS (and often Vaders and full of bees) about it. Being in a relationship with someone who is disabled or seriously ill poses challenges but that’s no excuse for shitty behavior.
Out of curiosity, does your partner have a history of poking fun at or making insensitive comments about other aspect of your life/the lives of people around you, that you’ve noticed, or is this an isolated phenomenon?
So all of my experience with serious illnesses in relationships has been with mental illness, so a lot of my experience won’t apply to the LW. But that being said, when I went through the worst bout of depression I have ever experienced, it was hard on my partner. I was suicidal and he was scared and worried about me and didn’t know how to deal with me. So he did some of the “there are people out there with much worse lives, why are you so sad?” and things like that and it was extremely hurtful and unhelpful. But my partner is a good person and a good partner, so I told him exactly how that made me feel and why it wasn’t a helpful response. At first he didn’t quite get it, but he really wanted to do right by me and he cared and wanted to have a strong relationship. He did a lot of research on depression and did a lot of talking to me about what he read and about what he could do to help and also about what we could both do to make this a viable, solid relationship that we were both getting something out of while I was sick. For instance, to be OK he needed me to control my anger towards him and express my feelings before I became resentful. We also set up a routine of spending time together. Now he’s my strongest support system for when my depression flares up.
tl;dr: A partner who respects you and is committed to having a healthy relationship with you will listen to you when you tell them they are hurting you and will do everything they can to make things better.
The thing I really like about the Captain’s proposed “that really hurts my feelings” is that it’s not something that can actually be argued against. Hurt feelings are hurt feelings.
A lot of the time I think people argue using, “They just don’t UNDERSTAND the situation, if they DID, they would feel the same way I do!” and then it goes into the chorus of You Don’t Know the Trouble I’ve Seen. So they spend hours trying to use FACTS and LOGIC and scary statistics to convince the other person to change their mind and stop the problematic behaviour.
But in relationships, the other person is not you. They are somebody else, and will not always think and feel about things the way you do. It is less important that the person understand your dire need for medication, than that they stop rolling their eyes and huffing every time you stop to take it. The really important bit is, whether or not they understand your treatment fully, they deal with it in a way that doesn’t hurt you.
Idk, I’ve come across a few jerks who are all “Why do you feel that? That’s stupid.”
Totally agree with you on the rest.
The one I used to hear from the abusive ex was “I’m sorry you feel that way”. To me this is now a GIANT RED FLAG. He wasn’t sorry for hurting my feelings, he was sorry that I “allowed” myself to be hurt. Hopefully LW’s girlfriend will not pull that one, but it’s one to keep an eye out for during the Talk.
I get “Well that’s just how you’re choosing to interpret it” from my family ALL THE TIME. Giant red flag with bells.
*RAGESAURUS SMASH*
Eesh, yeah. I’ve got one relative I’ve had to give a smackdown of the, “Well, you may not be able to choose how they interpret it, but by now you can CHOOSE not to say something they are damn well going to see as hurtful,” variety a few times to.
I don’t universally hate fauxpologies mostly because I know people who’ve got using I-statements as weapons down to an art. (“I am DEEPLY HURT that you chose to go to your sister’s wedding instead of spend the day with me” kind of deserves an “I’m sorry you feel that way.”)
“I’m sorry you feel that way” is the fakest fake apology ever.
I used that (“I’m sorry you feel that way”) when a guy in the movie theater wouldn’t move one seat to the left (into an empty spot) so my friend and I could sit together. But I absolutely did mean it disrespectfully, so I guess I was sticking with the trend. 😀
Oh lord, yes. It’s one of my definitive signs that someone is not on my side, and that said someone’s input should not be trusted, because they’ve clearly got their own whatever going on that is reshaping their world. They may not be a bad or evil person, they may be generally benign or absent in my life, but the minute they fauxpologize for my feelings because they don’t think their actions were the problem, nope. Not going to continue to engage with them on a meaningful level.
I have had two people like that in my life – one in my private life who ended up having so many damn red flags that it took years of therapy to realise, and a work ‘colleague’ who defined passive-aggressive. Because of those people, I now shut off the moment anyone starts a sentence with “I’m sorry that you thought I meant…”/”I’m sorry you interpreted my….”/”I’m sorry it appeared to you that I….” etc.
Anything where someone’s apology ends up blaming you – that is a red flag for anyone. It doesn’t matter if they’re right or wrong, but that way of trying to manipulate the conversation is Not On.
I tend to translate that as, “You’re being oversensitive, so I will pay a sop to your feelings and then do the same thing again next week.”
I also translate it as, “Time to leave.” At least for me.
I’m kind of on the other side of that and man, does it suck. I simply have not yet discovered a way of interacting with my mother that will procure a reasonable certainty of not hurting her, and I’ve been trying for some years now. I have no idea what it is I’m doing wrong.
If I take responsibility for not hurting her, navigating our relationship is like walking a very slim, windy path with INVISIBLE edges, and on the other side of these invisible edges lie terrifying pits of guilty doom.
I kind of had to choose the path of “these are her issues to deal with, even if I know she disagrees” for my own sanity. I’m still trying to avoid hurting her, but I’ve accepted it will keep happening, and I will not feel bad for it every time when I genuinely did my best to avoid it. “Sorry you feel that way” is exactly how I feel. I’m sad she’s hurt, but hell no I am not apologizing.
(Reading this back, it sounds like I’m describing the relationship with my emotionally abusive ex, minus the “refusing responsibility” part. This is interesting.)
I’m glad to hear about your progress! I think you’re doing the right thing. Just because you take responsibility for your actions and feelings, doesn’t mean that SHE has to. That would make it all easier, huh?
The really important bit is, whether or not they understand your treatment fully, they deal with it in a way that doesn’t hurt you.
I would take a step back: that’s the second really important thing. The first really important thing is that it matters to them whether they’re hurting you or not.
Some people believe that “your feelings are your responsibility” (which is an okay creed as far as it goes) means “I don’t have to care how you feel” (not okay if you’re in a relationship with that person) or even “I have no minimum decency requirement” (not okay, period.)
“The first really important thing is that it matters to them whether they’re hurting you or not.”
Yes. This.
There are all sorts of things we do for our partners because they like it. If my partner prefers that I don’t leave the kitchen knives in the sink, I will do my best not to, because it matters to them- whether I care about the knives or not. Likewise, I’m not going to make jokes about his weight if I know it’s a sore spot- even if it isn’t one to me, I care that he feels good and safe around me, instead of wondering when the next dig is going to come.
“Some people believe that “your feelings are your responsibility” (which is an okay creed as far as it goes) means “I don’t have to care how you feel” (not okay if you’re in a relationship with that person) or even “I have no minimum decency requirement” (not okay, period.)”
I have met these people. Funny how it suddenly matters when it’s THEIR feelings that might be hurt- but everyone else? Doesn’t matter.
“I have met these people. Funny how it suddenly matters when it’s THEIR feelings that might be hurt- but everyone else? Doesn’t matter.”
Fucking seriously.
Like the person I know who systematically exploited grey areas in his relationship’s agreements and would tell his partner, “Your feelings are your responsibility” as a way to shame her from calling him out on shit he did.
Then when they broke up he wrote her an email in which he demanded that she resell the car she had bought from him while they were dating because it was too hard for him to picture her driving it.
!??!?!!?!??!?!??!!!
“If you open up and she makes fun of you, laughs it off, and keeps going with the jokes, realize that there are people out there who won’t treat you this way. And if she for one second implies that “someone in your condition” is lucky to have her and that you won’t be able to find anyone else, run”
Big pile of YES here. I am the girlfriend of a fantastic guy who apparently did something to anger the Vegetable Gods a while ago, because they are all trying to kill him. When we got together, he let me know up front that he had FOOD ISSUES and I was on board from day 1. I asked a lot of questions, which he answered, even if occasionally I asked them repeatedly because I was confused or had forgotten.
Sometimes, when we food shop together or I find safe restaurants for us to eat at, he gets all mushy and quiet-like, and explains that past partners had not been so accommodating or helpful. For me, that’s just love. That’s what love is. That’s what love does.
For anyone in a similar situation who lives in the United Kingdom, I’d recommend getting in touch with your nearest Carers’ Centre. These will be run by a local charity or council, and they’re places for caregivers to share their experiences and support each other.
For the LW, if the Captain’s excellent advice results in better understanding, could something similar be an option for your partner? It might be worth her looking them up.
I identify with this, with little stabby pains of guilt over admitting that I do. I have PTSD and my mother has decided that a number of my symptoms (although not all of them) are things I’m choosing to do. Namely flashbacks and anniversary-related trauma. This is particularly relevant because the anniversary in question was a little over a week ago, and we had to do another go around of “but you’re not anywhere near where it happened, I’m sure if you just IGNORED it you would be fine.”
For further context, last year, when I was also nowhere near the site of where it happened, I went into hospital.
It’s hard to admit because my mother is a good person and a good mother who loves and generally supports me. Just — not over this. And it’s really hard to accept that as a flaw that she has, and I feel like I’m betraying her even by thinking it — and even more by admitting it out loud to the world.
It’s ok to feel like your mom is failing you in this respect. She is.
Speaking as a mom, and I’m pretty sure a good one, we are still only human beings. Which means we carry our own baggage — for example, crap messages our parents instilled about mental health issues being a matter of character or choice, not products of biology and environment. And we have our own blind spots, our own denial. So you can say “she’s not perfect” without disloyalty, and you can let her know that you need her to go work through her issues somewhere else because when she’s around you you need her to suck them up and not inflict more damage with her skepticism.
Thank you. It’s good to send my words out into the world and have them come back to me kinder than they were when they left.
I think part of a mother/father’s power to hurt comes from the Pedestals of Infallibility young children are encouraged to put their parents on. Even once we grow up and learn that our parents are just people, with biases and baggage and all that, we still invest their opinions of us with greater Truth and weight than we would give anyone else’s opinion. It’s all swirled together with the “Mother/Father knows best,” and “we only want what’s best for you” (even though their values probably aren’t quite the same as yours, so their definition of “best” is not going to match yours), and an implication that “we know you better than anyone else, even you” (though parents’ opinions of their offspring are often a) outdated, based on behavior/characteristics the “child” has outgrown, and b) distorted by their own values and their need to believe certain things about their kids).
When a basically good, loving parent acts like PTSD is a choice you’re making, that hurts so much more than when some random ignoramus acts like that.
There’s no disloyalty in saying “huh, Mom really has no clue about PTSD, I wish she’d study up a bit and stop acting like I’m making a choice to still be traumatized.” It’s just acknowledging that she’s human, and a little out of touch on this issue. But even if there were disloyalty, if her behavior forces you to choose between loyalty to the myth of her as a Perfect Mom, and caring for your own mental health, you have to go with your own mental health.
Bookmarking this comment forever.
Could you please change the picture at the head of this column? It is triggering a phobic reaction in me that I cannot control, and it’s very hard to deal with. I would have emailed you privately had I been able to find any way to do that. Sorry.
Oh me too – I’ve been trying to deal with the horror it inspires ‘cos, you know, it’s my phobia and I know it’s unusual, and I want to keep coming back to this thread because it’s so important and wonderful. But I have major swarm-phobia (can’t even cope with big flocks of birds in the sky, or that skincare ad where lots of tiny people fill the screen). I’ve never come across anyone else with a similar thing (waves). Although I’ve just realised the solution – I can tell Adblock to block it! (phew)
Eurgh, that was horrible because it involved focusing on the picture. But done and blocked – thank you Firefox!
Yeah, it’s really bothering me too. I scrolled down really quickly so I only saw it for a second but I don’t want to risk seeing it again.
Sorry, didn’t see this sooner. I’ll delete it.
Thank you! Chiming in as another person who was getting the jibblies from that picture.
Hey LW, just a little complement to all the good advice otherwise here. There is a reason not to assume your gf is just a jerk. I’m now old enough to have been on both sides of the fence (the one where you or the other is sick to a really unreasonable degree). Frankly if given a choice I prefer the version where I’m sick and I just get to calm myself down and maybe do as I’m told (drink more, walk every day, whatever) to the one where I’m the healthy one and I just get to chew my fingernails to the quick from the sidelines. Being in the position where you are helplessly watching someone you love get sick and possibly die is really, really horrible, and very destabilizing.
So by all means have a talk, and express your feelings about the jokes. But don’t assume that she’s OK because she’s still healthy. Maybe the jokes are gallows humor because she feels like she’s been through hell, and is afraid to express it because she knows you’re the one who’s been really sick. Maybe you need to express gratitude for the ways in which she supported you and took care of you through that nasty time, and for the fact that she’s still there. And understanding of the fact that she’s been through a less visible but still very real form of hell. And then maybe you two can come to an agreement about expressing things in a better way :-).
“the one where you or the other is sick to a really unreasonable degree”
I hope you’re not Sick-shaming the LW, but it sure sounds like it to me.
No one’s said that the GF isn’t entitled to some scary feels of her own. I think there are several posts about the validity of her feelings and needs. But like I’ve argued for upthread, I don’t think LW is the best sounding board to hear them. In any case, not like they are now. It’s very easy to get in to the blame game and the LW can’t fix her condition. She can’t be blamed for having had a crappy kidney.
I’m pretty sure unagi meant “sick to a really unreasonable degree” not as “something it is unreasonable to expect people to stick around through” but as “something it does not seem right that anyone should have to go through, the kind of sick that makes you shake your fist at the sky and rail at whatever Powers you believe in.”
I read it that way, too. Sort of like “unreasonably early in the morning” or “unreasonably tired”.
Thanks alphakitty :-). To an unreasonable degree = not the kind of thing that’ll pass with a couple days in bed and lots of tea = no guarantee of making it through this one.
I’m happy to have been wrong!
I read it as “sick in a way that totally screws your life around, something nobody should have to go through”, not in a blaming way at all.
“Hey LW, just a little complement to all the good advice otherwise here. There is a reason not to assume your gf is just a jerk. I’m now old enough to have been on both sides of the fence (the one where you or the other is sick to a really unreasonable degree). Frankly if given a choice I prefer the version where I’m sick and I just get to calm myself down and maybe do as I’m told (drink more, walk every day, whatever) to the one where I’m the healthy one and I just get to chew my fingernails to the quick from the sidelines. Being in the position where you are helplessly watching someone you love get sick and possibly die is really, really horrible, and very destabilizing.”
Boy, do I feel you here! This year, I’ve had surgery, kidney problems, and a CT that turned up “some unusual splotches, about the size of my palm”. (Possibly the least comforting thing to hear at the doctor’s office.) All of this put together is easier than knowing my friends have a stomach bug. Even when I know *perfectly well* that nobody is very sick and they will be better tomorrow and they’ll be okay… I still just worry unreasonably.
I’ve also been known to make some LW’s GF-style comments. In fact, when I was reading that description I thought of myself. I finally explained this to a friend with a food allergy who has been on the receiving end; I’m not mad (I’d have to be a real jerk to be) and I don’t even mean what I’m saying. I’m just so scared and sad and upset for you that I’m having trouble controlling my mouth and it comes out mean, because anger is easier than sadness. Anger (or perhaps mean humor) implies some agency. It implies there’s anything you can do. And no, GF is not suffering like you are. I wasn’t suffering like my friend was. But seeing my friends sick just breaks me inside, and my maladjusted coping mechanism is to do the only thing that gives me any feeling, however fake, of control.
Of course it’s not right- I’m learning to change it, and part of that was apologizing and explaining. It doesn’t make it okay, but it means she knows she can ignore me if I react inappropriately in the future, and she knows that *I* know it’s not okay and that I’m truly trying to stop.
If that charitable explanation is true of GF as well, I don’t know who I feel worse for here. You both have it pretty tough. On the upside, if this is what’s going on, you also have each other. I handle that kind of deep-down fear better if I can admit I’m terrified and have a good cry, and preferably a hug from the person in question. (Food-allergy friend is fine quickly enough that I can ask her for this. I am lucky.)
Wow, thank you. This helps explain why my partner gets angry when I’m in lots of pain, in a way I hadn’t understood before. The poor lamb.
Thank you for this – it touches on a lot of what’ been going through my head for days about this post but I haven’t been able to articulate.
Beginning about a year and a half ago, my partner was diagnosed with, treated (first chemo/radiation and then surgery) for, and tentatively declared cured from a particularly nasty, aggressive, low-survival-rate cancer. While it was all going on, I was the Good Caregiver, the rock, the serene one. I knew what to do to handle my own stress and I handled it. I was very proud of myself.
Once he was out of the initial, acute surgery recovery phase – home, mobile, able to feed himself, considering going back to work, adjusting to the “new normal” of permanent physical and lifestyle changes – but still in a lot of discomfort and feeling the aftereffects of chemo and twelve hours of anasthesia – I started exhibiting some post-traumatic something. Random and unmanageable rage, anxiety attacks, night terrors, malaise, confusion and inability to focus. Extreme emotional fragility. It was all I could do not to lash out at him; sometimes I had to literally leave the house to keep myself from doing it. I quit talking to all of my friends because I hated everything that came out of my mouth – it was all fear, anger, and what felt like incessant complaining.
When I realized what was happening I started managing it as such. I talked to people again. I did a lot of journaling. I took times to lock myself in a private place and just cry endlessly. It was really HARD not to rely emotionally on Partner at this time – in any other situation, under any other stress, I would have, but he just could not deal with how the experience of his sickness had fucked me up, and it was unfair to ask him to try – but I got through it. It took SIX MONTHS, but I did come out of it. And once I was back to myself, and he was too, we could talk about it rationally.
IT WAS TERRIFYING. I thought I was losing my mind. I thought I was a horrible person. I can very much imagine that if I’d gone through this as a younger self, pre-therapy, without the self-awareness and self-care toolkit I have now, I might have dealt with it in other ways, including outrageously inappropriate humor.
I have nothing useful to offer LW, except – this is not your responsibility. It’s her shit to sort out, on her own, with Team Her, or with professional help. You’ve got your hands full with your own recovery and trauma. She might figure that out, or might not. *helpless gesture* The advice offered, by the Captain and in the comments upthread, are good for gently directing her attention to the need to deal with this, but what she does with it then? HER RESPONSIBILITY. Observe what she does with that, and draw from it the conclusions you need to draw about whether this is a safe person for you to be with. Maybe down the road the two of you can work out the impact this period of shared experience will have on your relationship long-term, but this is not the time.
The post-traumatic something makes sense. Supporting your partner through cancer treatment was like being a soldier in a war, and then you had to readjust to civilian life.
It seems like the caregiver and sick person should be able to support each other through the situation as a team, at least after it becomes clear that nobody is in danger of dying soon. I wish I knew why it didn’t just happen that way.
Is it all right to ask the fellow commenters a question that is similar to the LW’s last question?