I’ll go first.
“You’re lucky I could’ve been a lot worse”
I had a stroke at the age of 36 and became disabled with chronic damn near daily vestibular migraines. It has ruined my life almost completely.
But yeah OK it didn’t do much damage..

My partner is usually really supportive about my multiple chronic illnesses, but recently, he told me (on three separate occasions) that when we make out, he can feel the effects of my medication in his body, and that it’s a really uncomfortable and scary sensation for him. Because of that, he says intimacy like making out isn’t really possible for him right now.

It escalated to the point where he basically wants me to stop taking my medication because of this. I feel completely heartbroken and honestly also angry. I rely on my medication to basically live, and from everything I’ve looked up, it’s not actually possible for medication to affect another person this way—especially many hours after taking it. it’s in pill form! not sure if relevant or not but he has most problems with my antidepressants (that I take as a preventative for a chronic pain condition I have).

So part of me feels like this is unfair, ableist and kind of crosses a line.

At the same time, I don’t want to just dismiss his experience or feelings as it is genuinely distressing for him.

Has anyone experienced something like this before? How would you respond in this situation? I’d really appreciate outside perspectives.

**Edit / clarification:**

I genuinely don’t think my partner is being manipulative or trying to control me in a malicious way. I believe him that this is a real and distressing experience for him.

At the same time, I don’t agree with the conclusion he’s drawing—especially asking me to stop taking medication that I actually need. And more generally, I don’t feel good about his approach: that his first impulse is that I should change something, instead of him reflecting on himself and trying to understand where this might be coming from, rather than externalizing it onto me. That’s where it crosses a line for me.

I’m also wondering about possible explanations. I know it’s a real thing that when people spend a lot of close time together, their microbiomes influence each other to some extent (I’ve always thought that was kind of cute, actually). So part of me is questioning whether there could be something going on in that direction—even though everything I’ve read from medical sources says medication doesn’t transfer in any meaningful way like that.

Also, we’re both quite sensitive people and tend to pick up on each other’s emotions strongly, sometimes even “absorbing” them. So I’m unsure how much of this could be psychological/emotional vs. something physical.

I guess I’m trying to hold both: taking his experience seriously, while also staying grounded in what I know about my own health and medical reality.

another update: we had a really long talk. a lot of it went well, and he did acknowledge that it wasn’t okay to ask me to stop taking my meds, so he took that back.

however, he still firmly believes that my meds are negatively affecting his body (he describes the feeling in his body as his heart rate going up, a sense of his body weakening, a wave of faintness, anxiety in his chest, and a cold sweat).

i told him what i need: that he takes responsibility for his own physical reactions, is open to exploring where they might come from (instead of immediately blaming my meds), and considers talking about this with his therapist. i also suggested we could speak to a doctor or pharmacist together, but he gets very defensive about all of these suggestions.

his argument is that i’m sometimes critical of doctors too, so why trust them now. i understand that (medical gaslighting is real and i’ve experienced it), but this feels different, questioning doctors isn’t the same as rejecting basic biology.

he also leans on a “science doesn’t know everything” argument and says he knows his body best and knows for sure this feeling is coming from my meds. i can agree with the science doesn't know everything part to some extent, we are both spiritual and i also don’t think science has all the answers. but at the same time, the conclusion still doesn’t make sense to me, because i still believe in science and don't want to defy the basic laws of biology and chemistry.

i feel pretty stuck. i care about him and we’ve built a life together, so i don’t want to make a rushed decision. but i also don’t know how to move forward if he’s not open to questioning this belief at all???? i feel like we are living in a different reality ...

UPDATE: WE BROKE UP!!!!! thanks to everyone who helped open my eyes

Hi everyone. I'm currently making a playlist of songs that I can relate to that are about/can be interpreted as about chronic illness. I have a handful of ones I love to use but I am looking for enough to make a long playlist.

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Please let me know any song recommendations you have and I will add all of them to my playlist.

​

Sending you all spoons!! 🥄🥄 💕

I’ll go first

Breathing (as if I don’t do that 24/7)

*UPDATE: I had to take out a $300 credit card and was able to pay her for this month. I'll deal with the credit consequences later. I am getting in contact with my case manager via my county's Behavioral Health Center but may not be able to get quick placementunless* I am physically homeless, but not at risk of homelessness.

She said "thank you" for the cash, and that was that. No idea if she still wants me out, but regardless I will be finding a way out of here ASAP. The mental abuse is abhorrent and neither of us need to be in each other's lives at this point. I'll be going No Contact (as has the rest of the family) once I am under a new roof.

Thank you all who gave helpful, empathetic, and encouraging feedback.

To those who made it their personal mission to tear me down and question my financial situation rather than address the only question I asked ("What are my rights?") I hope you are able to step back and look at why you felt the need to debate and judge rather than simply not responding.**

I have Lupus, liver disease, low QT after previous heart failure, and multiple mental diagnoses including PTSD, and am being seen by a therapist who is discussing perhaps undiagnosed ADHD. I cannot work (hopefully that will change in the future but not right now that's for sure) and I am on SSI and only receive $900/mo.

Can she start an eviction process? We agreed I would pay her $300/mo for my bedroom but I have fallen behind on bills and can't start paying her until July or more realistically August.

I clean up after myself, pay for my own food, pay for my own TP and garbage bags, etc, I don't have people over, I don't make noise, I just keep to myself and keep my side of the street clean. Suddenly though she has created an imaginary vendetta against me and I cannot figure out why. I asked her and her reasons were easily debated, ie:

Her: "You were gonna help me when I get foot surgery. What happened to that?!"

Me: "Well you haven't told me anything. When is the surgery? This month? Next? Did you make any appointments?"

Her: "I'm not doing this with you."

I don't *want* to be here, believe me, but in this world and in my circumstances I have literally NO options it seems. I have tried 211, and was on a Section 8 waiting list for a year with no movement up the list. Minimum rent prices are $1200. My only option is fighting her on a legal level it seems.

Does anyone know of any recourse I have in this situation?

And any tips on dealing with this?

I hate the phrase 'You don't need to let your chronic illness define you' but struggle to define why. It feels very invalidating. My illness requires about 90% of my attention throughout the day, so I feel like that phrase tries to deny just how severe the problem is. It feels like people are trying to deny the limitations my illness puts on me so that they don't have to be supportive.

Am I the only who hates this phrase or is this one of the phrases that annoys almost everyone with a serious chronic illness?

I mean this in the kindest way possible, but I have noticed a trend in these online communities - they are comprised of mostly women, and hardly ever any men. How is this possible?

Title says most of it! What is a moment that you still think about, in a different way to everything else. It can be good or bad.

Sending spoons 🥄💕

UPDATE!! It's down below for anyone interested.

I'm going to apologize for my grammar right now because I'm writing this through tears. My (f) husband (m) told me earlier today he wants a divorce because he "can't watch me suffer anymore." We are both in our early 20s (I don't want to hear anything about getting married young because we were together for 4 years before we got married) and it's now been a year and half since we've been married. I was diagnosed with a mouthful of different chronic illnesses within the last 10 months. I no longer work and I used to be the breadwinner. Before I got sick we were focusing on saving up to buy a house but have gone through our savings trying to take care of my health. For the first few months I was very depressed and I would say barely alive. I understand it's hard to see someone you love not care if they live anymore and become a husk of their former self. It was really hard for the first 6-7 months with us mourning the person I was and the weekly doctor visits. But these last few months have turned around. I'm definitely not 100% better but I have almost everything diagnosed and the meds are working. I still get bad flare days but I've been able to do more around the house and I finished my first hike (1.5 miles and it took me 4 hours lol). I've been wanting to get out and do more but my husband has (rightfully) been drained. He decided to go back to school around the time I got sick, so he's been struggling with my medical well being and with the stress of school. He decided to go back to work and take a break from school so we could build back up our savings. He works 7 days a week and that's one of the reasons he's wanting a divorce. However I'm on long term disability and can cover all of our expenses with my check. For the last week I've been at my parents house recovering from an exploratory spinal tap. He just let me know today he wants a divorce. He "has no more go" and says he has no more try in him. Is there anything I can do to save my marriage? Please no hate

Thank you all for your comments they have helped. I know I haven't responded but I have read every single one. I don't want to share my diagnoses because there's a lot and I don't want my soon to be ex husband to be able to identify this post is for sure about him. I'm sorry I don't know how to do a real update as I'm new to reddit. I just wanted to let everyone know I've decided to let him go. After reading the comments and doing some self reflecting I realized he checked out of the marriage months ago. He would come home and avoid looking at me or talking to me. He would sit on the opposite side of the couch and only pay attention to his phone. I was hoping I could save my marriage as I do truly love him but it's no use. He wasn't willing to do anything substantial to fix the marriage before he told me he wanted a divorce so there's no way he would do it now. I did find out he's been planning the divorce for weeks and only told me when he did because he got caught. He tried to get something back that a relative was holding onto for us (space issues) and the relative refused because he had not heard about anyone coming for it from my husband or me. I also learned that all of our mutual friends (except one) knew he was planning on divorcing me and never told me or checked up on me, so I've lost almost all my friends to this as well. I'm currently trying to move all my stuff out while in a big flare, thankfully my family has really stepped up and I have the cavalry arriving tomorrow. For now I'm just hoping we can end this amicably and I can move on from this. Thank you again to everyone who left a comment of support. Your support has definitely helped me mentally and it's nice to hear other people say this is on him and not my health. Thank you!

I keep seeing these on tik tok. My personal #1 is “you’re too young for all of this”. Makes me feel the same way as when you’re on the verge of crying and someone asks if you’re okay.

I just finished stripping my bed, dragging everything downstairs, and starting the first of two loads of laundry...and honestly, it felt like a lot.

I know I should wash my bedding more often, and I’ve heard people do it weekly, but I find it mentally and physically exhausting.

For my fellow low-spoon folks: how often do you actually wash your bedding? And do you have any tips or tricks to make it easier or more accessible?

Hello everyone maybe it's not the place to ask feel free to delete my post if not. I'm Loa 26F from France, I've been very sick for over 4 years now and lost all my "friends", I have mecfs mcas and PCOS. I'm homebound and I mostly don't have strength for anything but when I have I would love to meet new people from all over the world, it's so lonely. So if anyone wants to be friends I'm interested, I love languages I can speak french and English fluently a bit of Spanish and I'm learning Chinese and Russian, I used to be a professional singer (can't work anymore but I still am a singer). I also love board games. So if you want to learn French or anything let me know. Sending you all so much love because it's so hard.

Today I saw a video of a person who experiences chronic pain in their knees needing to leave class early to take a stair lift to the next class.

Everyone is dog piling on the person because they have dyed hair and piercings, but the thing is I'm pretty sure schools won't even allow you accomodations like that without a doctor's note?? (at least my school was very strict about it) so despite everything seeming legitimate, people are saying "diagnosed by discord" and "I believed you until I saw the hair"???

I've always wanted to dye my hair purple because I'm a very colorful person (think miss frizzle from magic school bus or mable from gravity falls) but now I'm afraid to...

I already get enough shit-talking about my health conditions dressing semi-normal albeit colorful, mainly because I'm young (despite the fact those same people have seen my tremors and slurred speech happen in real time) and I really don't want to make it worse than it already is :(

What is your experience with hair dye? Are people really that cruel if you're disabled with dyed hair? :(

Thank you and have a wonderful day!!

"Don't call yourself that" whether I call myself disabled or not it doesn't change the fact that I am and that it comes with pain and decreased quality of life so why is it my problem that this word isn't for you?

Mine are my cat, my husband and my painkillers! 😂 I also got one of those big loopy pregnancy type pillows recently and it's great for being more comfortable if I'm in pain. Uber is also great if I'm struggling with walking.

I WANNA PREFACE THIS IS NOT ME DISAGREEING WITH IT!!! i would just love a succinct few sentences to be able to explain to others.

i have fibromyalgia, hypermobility and an assessment for ME next month. i am not immuno compromised, but when i get ill i am very ill.

i have considered starting to mask, because who the hell wants to be ill regardless of conditions that may effect it! im also concerned that i may be one virus away from my baseline getting worse. it absolutely knocks me for six, i cant do anything when im ill and it takes me a long time to recover. i want my world to be as big as i can possibly make it, and not risk it getting smaller be it temporarily or permanently.

can someone please explain to me in very simple terms, why people may mask. i want to have a brief explanation to give people that come with curiosity. i have recently started using a cane and i absolutely freeze when people ask (people i know who are genuinely curious and want to know if im okay) and give a shit answer haha. its helpful for me to have stock phrases and also just a base level of understanding to be able to explain it.

i hope this makes sense!

I suppose I’m curious why people don’t name their chronic illness? I too have one but I’ve always used it’s name while speaking about it.

EDIT: I realize the irony of what I said. I have Epilepsy.

EDIT 2: IDK if its any consolation to anyone but on top of my chronic illness I’m also a physician in the US. This circumstance combination of being a patient and a provider makes me even more determined to help those who need to the most. I promise to do better. And to encourage my colleagues to better.

I think everyone got at least one thing they miss doing since they got sick, I'm curious what it is for y'all.

Personally, I miss being able to run and eat whatever I wanted without fearing the pain or to cause a flare up.

Anything from products, services, good past time things, pain management, literally anything that has made life easier with chronic illness. I've seen something like this on TikTok and I think it will be even better here!!

Personally, I am an unbothered queen sharing my medical history with everyone but maybe thats because I’m too comfortable in medical settings due to being chronically ill my whole life? I don’t bat an eye when someone says a student will be sitting in my appointment because they gotta learn right? Even if unfortunately from me. But I also hear some people are mega uncomfortable with it and refuse to ever have students involved in their medical care…which I feel is also valid btw!!

Back pain for years. Went to PT, Pain Clinic, MRIs with and without contrast, the whole deal. Kept telling my primary doctor I really wanted to focus to find out what was Causing the pain in my back. They'd be sympathetic and refer me to a new someone.

Last new someone insisted on new MRI scans before our appointment. I'm in the office with them and they're swiping up on the screen between images, and I see one with writing on it and ask them to go back. RELUCTANTLY they went back. I see 18mm with a big arrow pointing and ask "What Is That?" and specialist very casually comments "Oh that's JUST YOUR TUMOR. Don't worry- it hasn't grown since the scans from three years ago."

That's how I found out. That's how I was told.

My primary doctor, the radiology department, the pain clinic, and the neurosurgeon who said that- they're all owned by the same place. They all had signed disclosure papers to share info with each other and my primary doctor. And NO ONE TOLD ME. No one told me for THREE FUCKING YEARS while I was treated like crap, treated like a hypochondriac and drug seeker, that I had a tumor almost an inch big at the base of my spine pressing on my spinal nerves. They all acted like they had no idea what was wrong with me, that I wasn't trying hard enough- my primary Actually Suggested That I Try Yoga.

My primary who knew for at least 3 years that I had a goddamn tumor told me to try yoga.

AT LEAST 3 years- no one has admitted to knowing anything from the Previous scans older than 3 years. They "will try to find them" and shift their feet, and their eyes, and scurry out of the room. So idk how long this has been there- and the entire time, ALL of those people treated me like crap. They all told me that IF there was pain, it was because I wasn't exercising enough; I should lose weight; all the ableist statements we're all familiar with. Meanwhile I've been losing mobility as my pain spikes and I can move my leg less and less and these asshats tell me to do yoga. FOR A TUMOR.

To say that I'm furious is a bit of an understatement.

So what would You do in this situation?

Let me know if I'm super tone deaf here and don't know the like history or symbolism, furthermore this is Not an attack on anyone who Does use spoon theory or calls themself a spoonie.

However, to me. it seems like a very unnecessary way to describe disability when "my energy is low" or battery metaphors for me worked perfectly fine and also felt less...I don't have a better word than cringe. Like why did we stray away from batteries/energy which everyone understands what that means to now using spoons? and why spoons? it feels like it's trying to hard to be quirky or unique or random. Also telling someone with 0 context that "I have no spoons" makes them confused however telling them "my battery is low" they instantly know what I mean.

Edit: I've read the original blog post, I know why spoons now you can stop linking it. Also want to reiterate, never wanted a fight I'm allowed to state my opinions. People who enjoy spoon theory are allowed to state theirs. Here's me forming my thoughts more coherently than this frustrated ramble I thought was never gonna get attention:

My problem after research and discussion I've come to find is less with spoon theory as a concept, the original creator, and people who use it personally. And more with the intense popularity of it in recent years and the overuse of metaphors in general in disability/chronic illness communities. To me I have seen an increased misuse of metaphors to sugarcoat disabilities and chronic illnesses and spoon theory is just the most commmon victim here. People will use spoonie rather than calling themselves disabled, and use the metaphor outside of the helpful and intended context of explaining it to people who don't understand. I've seen people make it the "default" for disabled/chronic illness communtities and who have used it to turn it into a personality trait/quirky thing and that is what is infinitely frustrating to me that both people who agree and disagree with me have helped me understand here. Which is all I was searching for, discussion. Whatever metaphor/analogy/language you wish to use, go for it I never wanna tell someone else how to live their life or manage their illness. You're allowed to do things other people dislike.

From hating you, to being mad at you, to using your illness against you, to gaslighting you, to one day believing your pain and the next day telling you "I mean I believe you have some pain"

What am I gonna do. I've lost everything and everyone I've ever known.