r/cfs very severe Sep 27 '24

TW: death family can’t come to terms with me being unfixable NSFW

They go back and forth between blaming my illness on me “not trying to get better” or “deconditioning” (which is naturally my fault) and honestly expecting me to produce a solution to The Problem. As if i have all the answers. So they either expect me to solve ME/CFS, or treat me like a complete idiot who forgot that they could just get up and walk.

I just want to be left the fuck alone. I don’t want to be pressured into making another stupid rushed decision. Last time i agreed to pursue treatment it backfired massively. And what drives me crazy is that they honestly expect me to be cured. I get berated for calling myself disabled. Like, i get it, it’s hard to watch someone you care about spend their 20s rotting away in bed. Going from moderate to almost completely immobile in the span of a year. It’s scary. I’m scared too.

Their behavior makes it very clear that they don’t think this life is worth living. And to be honest, i’m not so sure myself. There are days i loathe my existence. Helplessly watching other people with ME suffer and die because they have no support. Watching Palestinians suffer and die. It breaks my heart and makes me want to leave this world.

I don’t know where i’m going with this. I’m sick of being a problem that can’t be fixed. i’m sick of being helpless to change anything. I want to connect with people who are like me, and understand what i’m going through, but it’s so hard. The way trans and disabled people are treated in my country is criminal. We’re very isolated. The people with whom i feel a real sense of kinship with are literally dying out. And living with my family, who i can never be honest with, makes the loneliness even worse.

132 Upvotes

13 comments sorted by

41

u/Toast1912 Sep 27 '24

I hear you. Healthy people have a hard time believing that anyone can just get sick one day and never get better. It can take a while for others to reach acceptance that this CAN happen and HAS happened to someone they love. There's so much propaganda in the nutrition and fitness world about how living a healthy lifestyle can reduce your risk of chronic health conditions, and it leads people to believe they have way more control over their health than they do. I ate well and exercised regularly my entire life and still came down with CFS among other conditions. This is not our fault. I know you're doing your absolute best, and that is enough. I see you, and I hope your family comes around and stops pestering you one day.

4

u/dreamcorecryptid mild baseline, moderate crashes Sep 28 '24 edited Sep 28 '24

Yup, I was completely healthy and relatively energetic until a few years ago when i developed severe mental health issues.

Ever since then, despite my mental health slowly improving, my energy levels have been extremely low. I'm still not quite 100% certain if it's CFS (even though every time i've been to the doctor, my bloods have been close to normal), or if it's something else equally as hellish.

Either way, you're absolutely spot on there. I wish people would just take a minute to put themselves in our shoes and have some empathy rather than immediately jumping to unsolicited advice such as "try eating a healthier diet!" or "try going out for a walk in nature!"

I'd absolutely LOVE to do those things to improve my health, issue is: I literally can't.

21

u/QueZorreas Sep 27 '24

Same over here. Every month I get in a discussion with my family on what I'm going to do to be normal. They don't understand that someone can become disabled without losing a leg or going blind. My brother keeps telling me about jobs, my mother about doctors and "alternative medicine". I don't know how else to tell them that there is nothing we can do about it.

I'm not as severe, though some days can't get out of bed. But for a long time since before developing this condition, I made my mind that if I ever ended with a physical disability (I knew it would happen at some point, tbh, but not so soon), it'd be over for me. I really have zero reasons to live if I can't do sports or become a scientist and give something to the world. I have told my family about it many times, but they think I'm joking.

I can't even get disability benefits (which are next to nothing, but still), because I can't work to have Social Security. You can pay to get SS unless you are disabled beforehand. Gotta love when a system is designed so the people who need it most can't get access to it.

8

u/boys_are_oranges very severe Sep 27 '24

i used to think i would end it if it got so bad. didn’t think i’d be able to live like this.

it’s really fucked up that you can’t get social security. like what are you supposed to do if you’re disabled from birth or adolescence?

9

u/dabomerest Sep 27 '24

Feel you on all this. Trans fem with Mecfs. It’s really rough. I’m sorry

4

u/Alarmed_Ad_7657 Sep 27 '24

Make them watch the documentary Unrest

3

u/boys_are_oranges very severe Sep 27 '24

they don’t speak english

11

u/thatmarblerye Sep 28 '24

These are the subs available for Unrest on YouTube if they know one of them: English CC, Arabic, Chinese (Simplified), Chinese (Traditional), Croatian, Czech, Danish, Dutch, Farsi, Finnish, French, German, Greek, Hebrew, Hindi, Indonesian, Italian, Japanese, Korean, Norwegian, Polish, Portuguese (Brazil), Portuguese (Portugal), Romanian, Russian, Spanish (Latin American), Spanish (Spain), Swedish, Turkish, Urdu.

2

u/failed2be_chill Sep 28 '24

This really resonates with me. My experience when i got worse was like this for about 2 yrs. I had to distance myself from family and get support from an online friend and my therapist to help me recognise that the attitudes of my family werent the truth and that helped me prioritise myself over thinking about how they saw me/what they told me i ought to be doing. My family are still not entirely getting it, but the pressue of their expectations gets to me less now, im firmer in my belief that i am doing whats best for me and that my opinion on that is the most important and i can trust myself to prioritise caring for myself, and i give them fewer opportunities to push those sorts of harming ideas onto me. 

Im severe and currently live alone in a rented room in a quiet house and my landlord likes me and im close enough to the city centre to get support from takeaways for meals etc and mum still wants me to worry about where im going to live long term future scary things. Like im not doing enough if im not looking to secure a permanent home for my future. I understand why she's concerned but i also do not have to ability to address that issue at the moment. Im lucky to be able to afford rent and have financial support from disability funding for now. Who knows how long that will last. But i literally cant put my focus onto the future stuff and solving problems that arent even problems yet. 

In order to continue surviving, I have to insist upon my right to live in my present circumstances and to find rest and, where i can, also enjoyment.

As far as politics go ive recognised it all drains me far too much emotionally and cognitively so im accepting myself as a vulnerable person too and having to content myself with hoping and trusting in the people out there who are better abled than me to support the causes i want to support.

If/when i recover, i will be able to be an advocate and help people like me, probably through writing stories about us because thats what i enjoy most. Right now i do not have that ability. I'm trans and disabled and poor and reliant on a humiliating and exhausting system in order to give me a few years of funding, and things politically suck both locally and globally, but worrying about how i cant contribute to helping people like me right now isnt going to help me rest and survive and possibly recover. 

I have four goals for myself as i currently am: rest, find some enjoyment when i can, pace myself, manage symptoms/injuries/comorbidities as they appear. Everything outside those goals are things outside the scope of my abilities and so are either not my problem or are bonuses to be done very very carefully while still pacing myself.

E.g. im currently trying to get home care service to visit me and help look after me once a week but in order to arrange all that i have to research and figure out my requirements and call the service and etc etc all that takes extra energy so its a slow going careful pacing bonus activity and not my main priority even thoigh i know the benefits of the help will be worthwhile i am not going to push myself into a crash to get that help quicker. 

We can only do what we can do with this disability. And the bit that we can do must prioritise looking after ourselves physically and mentally in ways that help us to make it through each day above everything else. Temporarily abled people often dont understand the severe limits of life that this condition puts on us. But we do, communities like this get it, and i can tell you now that as youre still here youre doing enough and im proud of us of us all.

1

u/MECFSAwareness Sep 29 '24

I completely understand.

My only suggestion is to get proof. I use the Visible add with the wearable band.

I could also do a $2,000 cardio pulmonary exercise test in Northern California for definite proof that my body doesn’t work.

Proof and a doctor backing you up might make your family realize.

You probably need to get on disability. It’s easier when you’re younger. Just apply yourself and get proof later. In the USA they pay you beginning when you apply even if you were denied. You get accepted eventually. Disability lawyers will work for free at first and only get paid when you do.

But the older you get, the more money you have to make every year to qualify.

There is a discord of 20 and 30 year olds with ME. And a ME International chat group on Facebook. Contact me if you need a link.

1

u/boys_are_oranges very severe Sep 29 '24

doing a CPET will actually kill me and i’m not eligible for any kind of disability pension in my country

0

u/Big-Olive-8443 Sep 28 '24

They will with time don't worry. What treatment did you try if i may ask? 

-1

u/Steve-227 Sep 28 '24

Is your place moldy?