u/EffectiveLimp531

I've been wanting to write this for a while but brain fog kept getting in the way.

I have stable relapsing-remitting MS since 2021. Then I caught COVID in 2022 and everything sort of... unraveled in slow motion. I'm now dealing with what's been identified as Long COVID on top of the MS, and while I do not care about which is the culprit of each symptom, trying to figure out my reality and what my prospect and projects can be is really difficult.

I finally got a formal ME/CFS + POTS diagnosis in early March, after two years of sick leave, several visit to docs which recommended "meditation and exercice". I see my neuro for MS every year, and he is the one that finally wrote that I might have ME/CFS and helped me get a proper diagnostic with a real expert. Yay.

A few things I'm struggling with and would love to hear if anyone else relates:

- **The legitimacy thing.** I don't feel like I belong in any space. In MS discussions I feel like a bad omen, specially cause my MS was easy to manage but covid wrecked my life. At the same time I'm not confortable disclosing these illnesses when I meet person in real like (when I walk my dog, it's the last activity I can do outside of medical visits), I cannot work and I feel completely invisible or valueless in society, all because of invisible disabilities, am I sick enough? Is this real enough? I know logically that this is a symptom of the disease and of a system that gaslit us all, but emotionally I can't shake it. Does anyone else deal with this? I would love the speak about LC, masking and everything but the noise in my head makes it difficult.

- **The self-gaslighting.** This one is harder to admit. There's a voice that keeps asking: am I exaggerating? Would I actually recover faster if I just... tried harder? Pushed more? I've internalized so much of the skepticism that was aimed at us that I sometimes aim it at myself. And then there's the fear underneath that — what if I did reach remission someday, and I couldn't recognize it? What if I've adapted so completely to being this sick that I wouldn't know how to trust feeling better? What if I held onto the illness identity because it felt safer than hoping? I don't know what to do with any of that. It scares me a little. On the other end I know that I feel "better" now in my life because I adapted everything around me to my situation and difficulties. Also the adrenaline rush I sometime feel (which always precedes PEM) is *so good*, my ADHD thrives and I launch 4 projects in a day, I daydream about going back to work and to the pool, travelling, before realizing that it's a trap, and that I should stop immediately to avoid triggering a bigger PEM than necessary.

- **ADHD going absolutely feral post-COVID.** I had ADHD before, managed okay with concerta. Since COVID it's like the volume got turned up to maximum and nothing works anymore. The brain fog and the ADHD symptoms blend into each other and I genuinely can't tell what's what. Executive dysfunction is at a level I didn't know was possible for me. Has anyone navigated this? I'm still trying to find the right approach and it's exhausting.

- **The brain fog itself.** Some days I can barely finish a thought. I used to be a software engineer and right now the idea of writing a function feels as distant as running a marathon. It's disorienting and honestly a little terrifying. I have difficultiers managing multi-steps process when I was known for my expertise in complex situations and projects before. I'd love to know how others describe this to doctors, to admin people, to anyone who needs to understand why you can't just "push through."

- **Applying for disability.** I'm in the process and it's... a lot. The administrative load alone is almost cruel when you're this cognitively impaired. I'm especially curious if anyone has experience navigating this with a pre-existing condition in the mix — does having an established diagnosis help, complicate things, both? The process is really difficult also because of my self-doubt, I realize it.

- **The MS + LC coexistence question.** I haven't found a lot of people talking about this specifically. My neurologist is great but he's also kind of figuring it out alongside me. If you have a pre-existing neurological condition and LC, I'd genuinely love to hear how you're managing, what's helped, what's made things worse.

I'm not really looking for advice on supplements or protocols right now — mostly just... connection. To know this isn't just me. To hear how you put words to things that feel impossible to explain.

Thanks for being here. This community has helped me feel less alone more times than I can count.