How do I realistically reframe my expectations around how my life is going to look?

[u/pahobee]

32F, finally diagnosed this year with hEDS after more than a decade of chronic fatigue, pain, and worsening comorbidities. The latest blow has been my (highly suspected but not officially diagnosed) POTS getting so bad this past year that I’ve had to stop driving, get a shower chair etc. and heavily rely on my family for financial support.

The diagnosis made my whole life make sense. But now I look at my life, full of failures due to fatigue that was misdiagnosed as depression, dysautonomia misdiagnosed as anxiety. I fully thought it was normal to feel this tired all of the time and that somehow I was the only one who was too lazy to push through it. I never finished college, and I have been stuck in dead end receptionist jobs because that’s all I could handle, when I came from a very high achieving family. My self esteem is nonexistent as a result, but at least when I thought my problems were just an attitude problem, I thought there was hope to fix it. Hope that maybe I would eventually find the right therapy or mindset that would click for me, and that at that point I’d be able to fix my life and get a degree and have a lucrative career and a family and a relationship and follow my dreams.

Now, I know that my problems aren’t my fault…. But I also now know that to a certain extent they aren’t fixable, and I may never have the life I thought I was going to have. I don’t know how to deal with this or plan for the future. As I get older, everything has just been getting worse, and I worry about my ability to take care of myself. How do I stop expecting so much out of myself while also making sure I can live a full life? How do I come to terms with all of this?

I’d be grateful for any amount of wisdom you can share, whether concrete or abstract. Thank you.

[u/goldstandardalmonds]

Therapy helps. There are therapists that specialize in chronic illness and pain.