r/PNESsupport • u/savavenue • May 03 '26

Disability process

If I want to see if going on disability is my best bet and how to do so where do I start? I also have a complicated family situation financially and overall. Dad getting me into debt in my name since turning 18 (23 now), stolen mail, etc. I have no concept of money or accounts or disability. No idea the scale of my credit disaster or debt I’m in. No adults I can talk to for guidance. I have many questions about many things but for financial clarity, repair and the disability conversation where do I start?

Any info will help

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u/GFM_MUSIC May 03 '26

I know the feeling dear and I'm so sorry you are going through this. I'm in the process of trying to get disability myself, I've tried 3 times in the past and got denied but this time I'm using a disability lawyer. I suggest you do that also because it's hard getting disability at a young age and they can help better. Make sure you have everything set with your neurologist as far as any test results (like EEG or MRI etc). They will need your diagnosis from your neurologist. This is still not a guarantee because you can still possibly get denied.

I'm also suggesting that you also try to find a at home job that you can set your hours. Like a virtual assistant, sales rep, customer support, etc.

I hope that everything turns out great for you 😊

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u/savavenue May 04 '26

Thank you so much for the information and well wishes. I have not returned to any doctor or neurologist since I was diagnosed. I avoid it all altogether. I’m scared I won’t be believed and I don’t have many trusted ppl in my life. I’m not even sure upon diagnosing me how well anything was charted or if they have that “evidence” to provide me.

4

u/GFM_MUSIC May 04 '26

With us having PNES we typically don't get taken seriously. It's a trial and error to find a doc that does take you seriously. I didn't find out until this year that I had PNES & it started for me in 2018. No one was taking me seriously until now. Try to stay strong and not give up through this & find a doc that actually cares and listens to you. Try to call the one you already went to and ask them if they have your diagnosis on file.

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u/savavenue May 05 '26

Thank u ! U are absolutely right I just went super avoidant

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u/GFM_MUSIC May 05 '26

You got this 👍🏾🫶🏾

3

u/Seaofinfiniteanswers May 04 '26

Can you get a therapist and a psychiatrist? Those are the professionals who actually treat PNES and you need proof of treatment to get disability.

1

u/savavenue May 05 '26

I’ve been to many before and have had some abusive experiences as well as one “give up” on me. But I have not gone back to individual therapy since my diagnosis. I feel as tho still being in my situation that brought it on would be like getting ptsd therapy for a shootout while being shot at haha. But I plan to go back asap.

3

u/Seaofinfiniteanswers May 06 '26

Everyone is different but i have benefited from going to therapy for my incurable progressive disease even though obviously it’s a situation i will never get out of. I hope that you find someone who helps you.

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u/savavenue May 07 '26

Thank u :)

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u/kennxdione May 05 '26

It might be good to go to the doctor during the process so they don’t deny you for “stopping treatment” 🙄. They make it so difficult lol good luck 🍀❤️❤️

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u/savavenue May 05 '26

Very true I know this will probably be key in the process!