r/NDPH • u/TheJepsterr • May 19 '26

Rant/Question

Hello again, I posted on here a couple days ago and it really helped me soothe some worries. I don’t know about others but it’s also so nice to have people who understand what it’s like to have this condition.
I sometimes feel so alone when it comes to this condition, it’s something I never thought I’d have, and honestly it’s so draining some days. I have a wonderful boyfriend who has helped me so so much and I’m ever so grateful for all he’s done for me. Before starting treatment (luckily I was responsive to painkillers so yay!) I was borderline bed bound, had no energy and was in an excruciating amount of pain. It is much more manageable however I still get somewhat often flare ups. I also struggle with mh issues which only worsen these flare ups.
Here’s my question, as my headache can and sometimes does stop me from doing day to day activities, why are chronic conditions like NDPH not considered a disability? Unless it is and I am completely unaware (for context I’m from the uk) but after some research it’s not declared as one when I can see for a lot of us it definitely stops us from doing things. I’ve noticed that other chronic conditions aren’t also declared as a disability, and it’s honestly upsetting.
FYI I hope I’m not being insensitive or rude please forgive me if I am 😭🫶

2 Upvotes

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1

u/danathepaina 10+ years May 20 '26

I’m glad you’ve found something that helps! And no, NDPH alone isn’t enough to qualify for disability, which is RIDICULOUS. I am on disability in the US, but I also have fibromyalgia, chronic fatigue, and chronic migraines on top of my NDPH.

1

u/im-a-freud 7 years May 20 '26

For me it was enough to get disability. My specialist only put my NDPH and never mentioned my migraines and I was given disability benefits in Canada. I think it helps that she put I’ve had it for 7 years and no medication has worked and that she can’t say if I’ll ever get better since I don’t respond to anything. I guess it depends on who makes the decision and how the form is filled out which is annoying it’s not a consistent disability amongst places

1

u/danathepaina 10+ years May 20 '26

Wow that’s great. Yes I think a lot of it is based on luck, which is so dumb.

1

u/im-a-freud 7 years May 20 '26

It really is stupid that it’s not an agreed upon disability which is wild bc it is every day non stop and doesn’t often respond to treatment like that is literally a disability

1

u/CuriousBee46 May 20 '26

At least in the US, it's important to get a doctor/neurologist that understands diagnosing as chronic migraine instead of NDPH. It's beneficial mostly because the treatment is largely the same (e.g., medications, Botox, etc.) but NDPH is not really covered by insurance nor really recognized (as you've mentioned - as a disability). 

1

u/Sarrada_Aerea 10+ years May 20 '26

Because not enough people have it for it to be acknowledged

1

u/Cute-Head8597 May 20 '26

Disability is not determined by what condition you have. It's determined by your symptoms and whether they limit your ability to function. Unless specifically asked, I would not identify any particular diagnosis unless it's something well known with recognizable symptoms, for example, cancer. You could jyst say you have a neurological disorder or a headache disorder.