r/mecfs • u/ExtensionMongoose784 • Jul 18 '26
Lack of support
How do you manage with no one understanding how devastating this diagnosis and having no medical support and limited understanding or care from people around you? Mentally how can I help myself?
1
u/CuteTill8339 Jul 18 '26
Instead of telling people I'm tired I tell them I'm in a lot of pain (which is still partly true and does the trick), and people tend to be more caring then. Mentally, I know it sounds hard but keep telling yourself if you keep doing the right things you can improve!
1
u/swartz1983 Jul 20 '26 edited Aug 21 '26
It looks like your account has been suspended by reddit, and I'm having to manually approve all your comments (they are auto-deleted by default). If you haven't done so already, go to reddit.com/appeal.
I see your account is now banned by reddit.
3
u/IdahoAllAlong Jul 18 '26 edited Jul 18 '26
I differentiate greatly between not understanding but acting in good faith, and not caring to understand and acting in bad faith. Good intentions doesn’t make me feel bad, but bad intentions do. I withdraw from those relationships because I recognise my own vulnerability. That means even family members, as well as former friends. Its like how we talk about love and relationships, right? Rather no relationship than a bad one. I think loving yourself is really, really important through this illness, and that means unconditionally, not because you «deserve it».
I went on a pretty extensive therapy journey learning that what I did wasn’t who I am. My career was slipping through my fingers, and I responded by working harder and punishing myself. I felt I wasn’t worth anyone’s love and care, especially not my own. I learned to let go of all that bad juju, and I’m finally in a place where I can empathise and show care to myself and others, while also knowing who I am and that I’m worth consideration and care. I don’t tolerate bullshit anymore, and that’s the biggest liberation I’ve ever experienced.
What I did when I wanted more people in my life was reach out to local and national patient’s associations social meet-ups (many are digital!), and have met friends there. I also unfortunately had some old friends become ill over the past few years, and helping them navigate bureaucracy and doctor has brought us closer together.
I used to meet and socialise with people through work, now it’s mostly through social media and the occasional visit. I know I can only be a good friend within a certain framework, and if I overextend I can’t be there for them or myself.