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How do you cope with Mixed Connective Tissue Disease (MCTD)?

Autoimmune Diseases | Last Active: 2 days ago | Replies (110)
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@suecutuli

Hello! I understand. Just this morning I was wondering how long I can just fake it? Forever is the answer I keep getting. No one can understand how weird all my pain is and that the doctors don’t know what to do with me . I just saw an Endo and now more tests. But I’m taking a break from all my Pt visits as I was going a lot. They love me and help me but don’t know what to do with me either.
I know there are tons of us out there but the fact that the damn professionals don’t have a clue is very disappointing. Still I feel like I must keep searching bc I fear my Daughter is in the Same boat! I know for me knowing others are suffering does not make me happy, but does make me feel not so alone. Good
Luck- keep fighting! I mean the alternative is certainly worse.

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Replies to "Hello! I understand. Just this morning I was wondering how long I can just fake it?..."
tabathab | @tabathab | Aug 6, 2023

It is definitely hard when the doctors don't know what to do with you... I can relate in many ways.

I've been given two anti-inflammatory medications to take. However, I am afraid to take them due to all of the side effects. I don't want to make my condition even worse... So instead I push through the pain and the flare ups.

And if I'm being honest, sometimes I push myself too hard because I'm a terrified that one day I can't / won't be able to do the things that I can do now and it is utterly terrifying...

It's a lot for anyone to take in and I completely understand that no it is not a good feeling to know that other people are suffering. But at the same time it is a relief to know that we're not alone. All we can do is keep fighting 💜💜💜

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