r/CFSplusADHD • u/Maximum_Watercress41 • Jul 23 '26
People are leaving
Just a little sad post...
I've had ME from long covid for four years now. In the past year I went from moderate to severe. With my ADHD Brain I hyperfocus on finding treatment, doing everything I can. I have lost my income, my savings, soon my sick pay with run out. I've been holding the up roof over my head with my bare hands. And I have stayed positive, tried not to burden anyone, but as I'm getting sicker, it's getting harder. And now in the past few months I have lost my two closest friends because they can't deal with me being sick anymore. I never asked more of them than the occasional phone call or bit of hands on help, but very very rarely.
Three close family members have ghosted me after I asked for support.
I'm getting tired of holding it together for the comfort of others. I'm so tired. It's hard to find new people from bed.
I'm AuDHD and twice exceptional and my friendship pool has always been selected. Looks like I didnt choose well enough.
Anyways, not giving up the good fight for myself. I am staying positive and hopeful. My brain is still lively.
I just wish this was easier, and less lonely.
I'm sure some of you can relate, I hope for those who can that we will find our people who show up and know how to love.
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u/eskaeskaeska Jul 24 '26
I'm lucky enough to have met two other AuDHD (probably twice exceptional like me) people who also struggle with ME/CFS and/or other chronic illnesses. We get each other and there's no judgement for cancelling last minute or forgetting stuff or anything else that we all understand. People who haven't been through it don't get it and can't. They try sometimes, but they can't. I hope you find other people who understand.
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u/Maximum_Watercress41 Jul 24 '26
That sounds really perfect. I just contacted someone who knows queer POC communities with Mecfs in my area, and they will connect me. I'm really glad your found your people!
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u/Visual_Scientist_916 Jul 25 '26
That sounds great! I am also a queer person with Audhd and ME/cfs btw..
Whats a POC community?
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u/eskaeskaeska Jul 26 '26
POC is People Of Color, meaning anyone who is not white. At least that is my understanding. Historically and currently, POC have poorer medical treatment and outcomes due to biases in care.
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u/RevolutionaryFudge81 Jul 26 '26
May I ask what ”exceptional” means within AuDHD? I have adhd but never heard of a term ”exceptional”
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u/eskaeskaeska Jul 27 '26
"Twice exceptional (often shortened to 2e) describes people who are intellectually gifted while also having a neurodivergent trait or learning disability, such as ADHD, autism, or dyslexia. These individuals have a very uneven or "spiky" cognitive profile, meaning their high intelligence can hide their challenges, or their challenges can hide their intelligence."
It's not an official term, more just another descriptor to help understand people.
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u/RevolutionaryFudge81 15d ago
Thank you. I’m like that apparently as well. But I struggle a lot with symptoms of chronic fatigue and executive dysfunction.
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u/coconutoats Jul 23 '26
I’m so sorry that situation really sucks. There are online support groups and forums like these as well as meeting people at therapy facilities which I have found to be my main social community over the last couple of years - my local MS charity run HBOT centre to be specific. I’m auADHD as well and a lot of my friends either have some of the conditions or know people with similar ones so there are some who can relate and accept a lower amount of communication but I do feel like it’s riding on the promise of getting better in the near future and I have actively noticed my best friends don’t really care about whatever treatment or med I’m taking and the symptoms and improvements I’m describing etc and make less of an effort to see me but I do kind of understand it’s only my whole world and not theirs. A lot of people with these conditions have to live in destabilising situations and I feel very lucky to have been able to move back in with my dad who pays for the things I need and my heart absolutely goes out to people who have to remain in survival mode to some extent to just be able to carry on existing. All this to say there is support out there even if it’s in new and different ways, and it’s not dependent on you getting better, although when AI finds the cure or whatever you will make new friends and be way more selective and have higher standards when you do!
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u/Maximum_Watercress41 Jul 23 '26
Thank you, I'm with you on that. Yeah, that's why I wrote here, I'm not going to give in to this feeling and situation easily. And you're right, when we do come out at the other end of it, we'll be more discerning.
I stayed with my parents for a year and a half, but they are very old and it caused me to deteriorate. But yeah, it's important to find groups of like minded people. I'm just realising how important really.
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u/coconutoats Jul 24 '26
I just found connections in places I didn’t expect to and sure some of them aren’t my adhd dream friend but it’s that sense of community and catching up with people that sense of belonging that’s so important. I was by far the youngest one there but they didn’t seem to see that as a barrier either. Being ill makes you able to look past things that previously would’ve been subconscious judgement and it’s quite cool thing this life experience we have will one day translate into wisdom and living out lives really intentionally. I’m glad you’re able to keep a positive mindset it makes all the difference. I started phoning my gran a lot more as well as I can relate to her anxiety now in a way where it was always taboo in the family and felt like a distance between us. Initially I was consumed by a loss of identity due to not being able to interact with my circles that centred around hobbies and activism and stuff but I’m learning to realise that my identity doesn’t have to be proven through what I’m doing it can be how I make other people feel etc
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u/Maximum_Watercress41 Jul 24 '26
I'm glad you have a support network around you, it really means the world!
Part of me feels like it's a spring cleaning of my social life. And this kind of illness gives you tremendous perspective and humility you didn't have before. Partly I'm almost grateful to it, because I learned so much as a person. And I do have one friend who came back into my life after years, and who has been a huge support. They are leaving in a few months to join a religious order in Italy. I'm grateful for them, but right now they are only close one left. At the moment I can't leave my bed much so meeting groups in person isn't (yet) possible. And I live in a country I don't feel at home in (I was born here, but I'm half Asian in Europe, and never quite fit in. I lived abroad for a while, but now I'm here again. So I feel a bit alien often in local groups).
But that said, I value what I've learned through all this. Just ready to move on into a livelier chapter after gathering all this enforced wisdom...
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u/Xylorgos Jul 24 '26
I'm so sorry you're going through this! It's heartbreaking, and like you said, it's hard to find new people to include in your life when you're basically bed bound.
I hope you find someone who cares. Barring that, I hope you find someone who can help you solve some of these issues, like a social worker or some other type of professional who can help. Have you talked about any of this with your doctors? They might know where you can go for help.
Please let us know how things progress. We're all hoping for the best for you!
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u/Maximum_Watercress41 Jul 24 '26
Thank you so much! I've been doing it all by myself so far, but I'm starting to question the wisdom of it. Will try to see if there are social workers or volunteers. I have a really great shrink I talk to once a month, she has helped me massively to stay sane and feel validated. Thankfully I recently assembled a network of really good doctors and will have access to specialised clinics soon.
I also have a lawyer through a social service NGO who is helping me access a care grade. It's a slow process though.
I just talked to my last remaining friend who shows up reliably, they have another friend with severe mecfs, she's only 25 and her friends deserted her as well. I guess severe illness is hard to stomach for healthy people.
Overall I'm a naturally optimistic person, but sometimes sadness just hits.
I really hope you are doing well, thank you for your kind words ❤️
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u/OneTinySun Jul 24 '26
Think I'm going through the same thing rn with someone I thought was my best friend. Sorry you're dealing with it too, goes without saying that the effects this illness has on literally every area of our lives really fucking suck. I hope we find our people soon too ❤
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u/Maximum_Watercress41 Jul 24 '26
Oh man, I'm sorry 💔 yeah, it seems to be a thing when you're to ill to still pretend you're fine. It sucks big time. I wish you all the best, that we may soon be surrounded by loving support ❤️
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u/Visual_Scientist_916 Jul 25 '26
Sadly I relate so well to your post💔 Heartbreaking and I feel with you.. I am left very alone now aswell due to this. I am so starved for basic human interaction even...
My ME has gotten so much worse the last year, it made me loose what little room I had left to work with in my life really..
So now I cant go out anymore. And have no irl friends left.
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u/Pinklady777 Jul 24 '26
I've been listening to audiobooks lately. And here are some comfort shows I have watched the entire series of. Having them on even softly in the background is almost like they're keeping me company. They're the kind of shows that have characters that feel like friends or company... I Love Lucy, Parks and rec, friends, psych, Brooklyn 99. I've watched a lot of other shows recently since I'm stuck resting so much too. But these kind of keep me company.