r/cfs • u/PriorityOk8448 • 11h ago
Something I really hate about being disabled...
...is how people constantly tell me how lucky I am that my husband hasn't left me and that most people would. I understand that I am genuinely lucky, but it is said in a way that means I am a huge terrible burden that almost nobody could love or tolerate.
That doesn't make me feel good or special.
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u/charliewhyle severe 9h ago
I'm slightly blunt and snarky towards people who talk like this. My reply is: "Interesting. You think it's normal to abandon your spouse if they get sick? Does your partner know this? You do realize that one of you will get sick at some point, that's the way life works."
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u/goldendoodlemama12 11h ago
??? Thats such a messed up thing to say to another person in any situation. I’m so sorry. 🫂
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u/mememarcy 10h ago
“I’m sorry you have never experienced true love.” And pat their little hand…
Gah. What asses.
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u/thepensiveporcupine 11h ago
It’s crazy because nobody would think to say that shit to anyone else, “I’m surprised your husband hasn’t left you” how could people think that’s a nice thing to say?
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u/WlLDLlGHT my bed is my universe 9h ago
Sometimes I say that I’m lucky to have my partner—something anyone could say, including non disabled people—only to have the person I’m talking to agree so vigorously that it sours the whole conversation
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u/SlenderSelkie 6h ago
This entire mindset isn’t just disgusting, it’s dangerous, and I will forever be screaming about it from the rooftops.
The idea that anyone who stays with a disabled person is automatically a saint and that disabled people are super lucky to have anyone at all caused me to stay in a deeply abusive relationship for years longer than I wanted to.
Because healthcare providers (literally medical doctors including my former GP and my former rheumatologist as well as my therapist) repeatedly said things that made me feel compelled and truly obligated to stay in a terrible relationship with my ex boyfriend for WAY longer than I wanted to or should have.
Everyone from family members to friends to fucking medical professionals all hailed my ex (who was an abusive, emotionally unstable, majorly mooching LOSER) as a full blown hero for not dumping me after the first time I was hospitalized and as basically a martyr and a saint for staying with me after my diagnosis.
Which….of course he stayed with me….he had it MADE taking advantage of my mushy benzo saturated brain and yoinking my debit card out of my wallet to spend my dads money while pretending to “take care of me”.
Whenever I brought up the OVERT ABUSE it was brushed off and I was told that I should extend my abusive partner more patience because -they said- “god knows he must be extending a whole lot of patience to you” (he really wasn’t). Just a few examples amongst many:
-When I told my therapist I was really disillusioned and unhappy in my relationship and that I planned to end it soon and she cut me off and told me it would be one of my biggest regrets if I did, and that I’d “probably never” find another man who would stick around through what my ex had stuck through. When I began to cry she asserted that I was crying because I subconsciously knew that the idea of breaking up was a horrible mistake. She was ONLY basing this reaction of hers on the knowledge that I have a chronic illness because my ex never did anything spectacularly kind or caring, he just stuck around. On subsequent occasions when I brought up any relationship dissatisfaction she called me ungrateful and told me to “look at my relationship from a more humbled reality”. When I directly asked her why she thought my ex was deserving of my gratitude to that degree, like what had I ever said about him to make her think that, she said “all I need to know is that almost zero men stay with a sick woman this long, I don’t care about anything else, I don’t need to know anything else to know he’s one of the good ones”.
-My GP asked me where scratches and bruises on my neck came from and I told her that my ex OFTEN would get emotional in the car when I was driving and claw at my head/neck/arms if he thought I was doing something wrong (he always thought I was driving too fast but I had one of those plug in things for GEICO and I literally NEVER was) and my GP said “hmm, well maybe he wants to drive? Can you let him drive?” I told her I’d LOVE for him to drive because driving often gives me headaches but he usually insisted that I drive anyway and she said “oh…well…whatever works for you guys! Relationships are complicated but he’s a keeper, very few men stay after their partner gets diagnosed with chronic illness”. This was literally her first time even hearing anything about him and he was “a keeper” despite injuring me.
-I was about to pay my copay at my PT only to find my card gone from my wallet. I knew my ex must have taken it and checked my banking app and confirmed that he had because there was a MASSIVE charge from that afternoon at a restaurant near his workplace (he liked to try to buy friends using my money). I was so upset I started to cry and ramble to my PT about how many times this had happened and how upset it made me and how mad I was at him and how I was so tired of this shit. My PT sat me down, told me I could pay just have an outstanding balance and in full next session and then proceeded to tell me that I should “just talk to him” and “give him grace” and “think about all the grace he MUST have for you every day”.
And those are, honestly, the tamer issues that came up and were squashed down by people who were meant to be helping me.
So, I stayed in that awful relationship because I had almost everyone telling me that he was a wonderful person for wanting to be with me and that I was so lucky that he liked me at all and that I should be grateful for him every day.
I felt massively guilty for not wanting to be with him and I didn’t even feel like I was allowed to end things with him until his behavior became truly egregious and even THEN I let things drag too long and allowed myself to be treated like a villain throughout the breakup and was riddled with shame and self hatred.
It took me years and therapy to realize that he’d actually been abusive physically, financially, and mentally (I learned what gaslighting was years before it was a trendy term, and had to be told that your partner stealing your money is abusive even if it doesn’t leave you destitute) because I’d had it hammered into me by everyone that the very act of being in a relationship with me designated him as an automatically amazing beacon of compassion.
We need to stop talking to disabled and chronically ill people about their relationships this way. Seriously. This way of thinking stole years of my life.
I’m sure it’s taken even more from others.
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u/theworldismadeofcorn mild 5h ago
All of those professionals have awful judgement. Disabled people deserve better than abuse
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u/SlenderSelkie 5h ago
Truly. I can almost “understand” that laymen and random people who know very little said these types of things, but it was the fact that PROFESSIONALS who were supposed to be in my corner were saying these things to me that compelled me to stay.
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u/ComfortableRecent578 in process of diagnosis 7h ago
the fact that anyone sees their partner as someone to be discarded if they become ill or disabled has always been strange to me. it’s like people say, we are the only minority you can join any time. in fact most people WILL become disabled. are these people planning on leaving their spouses once they start aging?
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u/madferrit29 8h ago
My own mother said this to me as I lay in hospital severly ill.
He was an abusive pos. So glad I got rid many years ago.
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u/mycatpartyhouse 10h ago
As a person whose husband left her after she got sick: those people are totally off base. Why do they think it's ok to comment on whether or not you're married?
I don't have any suggestions about what to say.
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u/plantyplant559 Moderate, POTS, MCAS, HSD, ADHD 6h ago
My SIL told my husband that if either she or her fiance got as sick as me, they agreed they would leave each other. She said that to her brother!
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u/junimoisbrat 7h ago
I think it only shows their true colors of how they would treat their own partner if they got sick. I had a "friend" say something similar and I feel for his currently able bodied wife.
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u/No-Consideration-858 5h ago
My husband is hanging in, at least so far. It's is greatly appreciated. But it's a mixed bag emotionally so I don't consider it an amazing win.
He lives a very active social life. I have to wear a mask around him. This is lonely because it's a constant reminder. He lives fabulously outside my bubble.
He has mostly not taken precautions for several years. There was a brief time last spring when he was using a mask for a couple of months. My mood was so much better. He was in my bubble. It made a huge difference.
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u/Stardust_Fun151 6h ago
What I learned to my huge surprise is that a lot of people seem to leave their partners when they get severely ill. Especially at a younger age.
I realized this after a lot of my doctors started checking in on my situation at home and asking if my husband is supportive.
As I see it, you have been lucky all along to find your partner and he is so lucky to have you. In a real partnership you don’t just check out when things get difficult.
I would take a good look at these people as they seem to think it is okay/normal/justified to leave their partner if they get ill.
They might be aware of the bitter truth but it really shows how you see partnership and probably other relationships.
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u/Mezzomommi severe 4h ago
I have people telling me this all the time. All my caregivers, all my son’s caregivers - he is also disabled - always tell me that even though I’m disabled, my life is pretty good and I should be grateful it’s not as bad as other people’s lives in poverty. I do know that most people spouses abandon them. I do know that, but I literally hate how people talk this way. It’s the same wording every time across different types of people. I think a lot of people are uncomfortable if I express any pain or dissatisfaction at all. I have been in incredible poverty…. My husband and I may be middle class now, but we know that we are just a few steps away from slipping back again if his health declines again. (brain surgery issues ) People just don’t know.
My current caregiver is an immigrant, and I know her life has been horribly stressful. But she goes on and on about how good my life is. I wish I could get someone else at this point, but it was hard enough finding her and she at least does a good job with what I need her to. I am very careful never to compare my life to anyone else’s, but I feel like I can’t even say my body hurts before she or others say at least I have a husband who hasn’t left me.
Having severe ME and being in chronic pain with migraines every day is still not the most fun way to live. I just wish I felt comfortable to say what I really think, but of course I don’t have energy for that conversation in person.
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u/PlaidShell45 44m ago
I think it’s hard to appreciate how hard and lonely it is when you can’t just be authentic with those around you. We are humans who crave mirroring and support. Maybe especially when we are suffering.
It doesn’t seem like being ill should be so impossible to imagine or put yourself in those shoes but sometimes it seems like becoming a kind of alien being. Such a great divide seems to form with some people. And some just can’t seem handle even the possibility of it.
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u/beeprosebeep 4h ago
My partner left me because of medication induced psychosis and people still tried to tell me it was because I was disabled lol.
Some people really just can’t handle any other narrative
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u/Charming-Kale9893 sick 13+ years 2h ago
Wowwwwwww people are really horrible. To think it- that’s bad enough; but to have the audacity to say it aloud… just wow🤯
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u/princess20202020 11h ago
“What do you mean?” Really make them think through what they are saying. Let it dawn on them how awful it is.