How Am I Supposed To Tell My Family I Have Neurodegenerative Disease At 19?

:general: Serious Discussion

It's complicated to say the least, I am not looking for sympathy just some sort of outlet.

I moved into independent living about a year ago because I don't have a great relationship with my mum and for one reason or another I had to leave. Given that I am blessed to have 6 siblings, who would do a lot for me but I would never burden them with looking after me because of my relationship with our mum.

It all started about 10 months ago, I was forgetting things, like simple words, speech for me never came easy. I am chatty, but it's more so to prove to myself I can speak. Thinking of words or ways to explain myself I find particularly challenging; especially recently. Then came the joint problems, it was as though I wasn't quite in control of my limbs, its not too bad but noticeable. I get pains in my joints a lot, things just going out of place and what not, lots of walking sometimes helps, like I'm retraining my body.

Then came the forgetting generally, I think it's important to not I have been in A-Levels for the past 3 years, and well... it's like information, basic information on my chosen subjects was disappearing... and not difficult things, basics. reading a question got more and more difficult, simply because I couldn't comprehend what it was asking, it felt like I couldn't read anymore. Like each word was individual and I could no longer string together a sentence; without reading back about 10 times. It drove me crazy... At least I didn't do English or essay subjects, that would of surely made my life impossible.

I went to the doctor not too long ago now just to be diagnosed with a Neurodegenerative Disease, it's not too bad now, but it will be. Now I can still function and think freely, to a level. It's not exactly hindering me, but I don't think I can pursue university anymore. Driving feels absolutely impossible now, since just cannot comprehend instructions fast enough.

But the crux of this is how do I tell my family? How do I inform them that as promising as I may have seemed I physically cannot do university? That I will eventually have almost no cognitive function. It feels like it's a rapid decline now, but I'm told that the progression slows... I suppose physics in university has became a impossibility, and I am not sure where to go from here.

Posted Aug 7, 2025, 4:36 PM UTC

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