I wish headache disorders and the toll of having one were more acknowledged in chronic pain communities. I don't want to invalidate people's experiences, I wholeheartedly believe every pain, illness and disablity is its own burden and valid, but there really is an added layer when that pain is felt in your brain and I don't see that conversation anywhere.
I'm no stranger to pain, I've experienced many types of pain, but really none of them affect you quite as much mentally as a headache disorder does. When the rest of your body hurts but your head does not, your thoughts aren't that affected in comparison.
I've had a headache for seven years now, without a pause (what you'd label as tension type NDPH), bad enough that at some point, after describing my pain levels, I was told by a neurologist I was lying because if it were true, I'd not have made it for that long (what an asshole). But yes, I have come very close to ending it because of not being believed, not having received any treatment/management, nor accommodations and because my condition was previously thought of as untreatable. I have gone through a lot of shit in my life, the headache is one of the consequences, I'm just 23, and I think it's understandable that after all that, being told you'd be in pain for the rest of your life doesn't sound like much of a reason to stay. Not when you see no hope of getting better.
After seven years, I have come across a relatively new treatment that finally explained my condition and while it's definitely a long haul, it seems to be doing something, I do truly believe that gradually, the pain will fade to nothing knowing what I know now and doing what I am doing as part of said treatment but that gave me this insight, since my pain now does sometimes reach lower levels.
The difference in the way you think when in 7-8 (never used to go below those, the worst I ever got to was probably a 9, I have fainted from too much pain before...and was told to get up and stop faking), level of pain and levels lower than that is staggering. I have never experienced that with any other pain. My treatment doesn't directly revolve around medication but if you've ever taken a pain med strong enough to do something noticeable and felt your suicidality/depression/negativity lift significantly in minutes, that is what I mean. Unfortunately, you can't be on stuff like opiates long-term. Unfortunately, you can forget what your mind is like without pain. It changes the way you see the world.
So for everyone with a headache disorder, I want to acknowledge this part of it. It is very difficult. It is difficult to feel your pain in the organ responsible for your consciousness. I promise you are seen for everything it comes with. Personally, I know I really need to hear that sometimes.
