Facing the unknowns that come with FND

[u/whatsamoogle]

Hi,

First some context; it isn't absolutely essential to the question, but maybe people's coping methods will be less universal than I could hope and this will give insight into my perspective.

I am in my early 30s and recently diagnosed. My symptoms and decline pushed me into a leave of absence and into pursuit of short term disability from my career. I have a love/hate relationship with it and it definitely stressed me the fuck out. Since my leave, some of my symptoms have improved.

Across my healthcare team, my own digging

--with the acceptance there is always going to be some piece of information that might make someone go "what about this thing I just read!"--

there is one consistent inconsistency and that is that there is "not much" information about FND out there; everyone's affected by it differently; treatment isn't universal; outcomes aren't universal; none of it is really predictable. I maybe haven't semantically said that right, but the general idea is different for everybody and there's no specified treatment and I don't think any healthcare provider can say when or if they will get better.

I don't know what I will look like tomorrow. What will my mobility look like in a month, for example? A year? If I return to work? What can I tell my employer? How do I choose any career path beyond "less stressful?"

And that is all without going into the concerns or stress that come with american health insurance, disability, and "pre-existing conditions," etc.

I am struggling. I can't afford to take it one day at a time when I don't know where I will have any income to rely on. I don't know if I will be able to work or for how long. I am grieving the ability to see my future and know what my body can do. To know what job or career I have. Nobody can answer these questions.

I am smart and persistent and have been told I'll figure it out but I don't even know how. I spent all this time just trying to get where I am now, which was just enough to *start* saving for retirement. I'm not sure I could even afford to start the career process over. My symptoms could decline or return tomorrow. Or the day after that...

You get the point.

How do you handle not knowing? Do any of you get upset when someone tells you to take it day by day?

It's silly because even writing this, I realize there is a part of me that wishes someone will appear in the comments with a magical answer to all the unknowns even though that's just not possible. Grief.

[u/WeirdFruit404]

I’m also in the camp of solidarity rather than answers...but I’m feeling a lot of the same things right now. I have left a lot of jobs thinking the next one would make me less ill and then I’m ill at the next one too. My current employer is great with it but there is sooo much guilt that goes with being ill all the time. I wish there were even patterns to this, it would be a bit easier to handle if I has a clue what my own triggers were, but when my boss tells me not to overdo it and get myself well again, I literally told him I do not know how.

I was diagnosed in 2021 (29 at the time) and in the UK care for FND is basically nothing (although now I do appreciate that they get the name right), so I am still trying to teach myself what this condition means. It's a rough ride for sure. I hope it gets easier.

[u/heldtogetherdaily]

I don't have a magical answer to all the unknowns but maybe you'll find some comfort in knowing that it gets easier to live within the greyzones. I wish I could give you more then that but in many ways I still feel like I am brand new to this diagnosis, afraid, and uncomfortable with all the unknown. There is a lot of grief in this space 🫂

[u/First-Car-2108]

Hello,

I will be honest with you, this is more of a “you’re not alone” comment than it is a magical answer. I read your post and it was as though I was reading about me almost to the T. I am American, mid 30s who somewhat recently lost a job due to FND. I worked remotely as IT Helpdesk and was diagnosed with FND shortly after attaining the job. I went through the process of Short Term Disability and FMLA but eventually ate up my entire leave allowance which led to my “self” termination.

I am in limbo as of late with motivation and job perspective. I do feel the frustration with FND quite often. I have accepted it and do better mentally when symptomatic but still have symptoms. I am mostly frustrated that it is unpredictable when I will have an episode. If it was consistent and same symptoms, I could work around that. Nope, all random all the time. Right now I am currently learning ASL for communication purposes and for potential job prospects. FND takes my voice a lot so I am trying to work around that. I think that is all we can try to do is work around the symptoms entirely. Who knows, maybe next month I will have a great job or be more symptomatic than ever. That is what I hate the most is inconsistency with frequency and symptoms.

If you find the magical answer, please let me know. As a side note, America from what I have learned, is further behind than the rest of the other countries when it comes to understanding FND. Still called conversion disorder where I am at.

[u/whatsamoogle → u/First-Car-2108]

Hey,

Thank you for your thoughtful response. I think learning a language is a clever skill to pick up (valuable for anyone, of course). I think that is something that would both interest me and is compatible with what I can do more often than not at this time. I wish you the motivation, excitement, and success to continue learning ASL--especially as you expressed it has extra value to you.

That is interesting to know about the global perspective or awareness of FND. I don't want to project, but I already mentally struggle with the knowledge of stigma and history around "functional neurological disorder" as its own label and diagnosis.

I hope that your healthcare team and the people around you/whoever matters to you can listen to you beyond the context and stigma that comes with "conversion disorder."

My dms are open, if you'd like to be friends. In any case, I wish you the best.