My experience with chronic pain
So I’m not sure if I belong here since I don’t have a disability, and I’m sorry if I’m overstepping, but there was no other place to talk about chronic pain, and I need to talk about this. I used to have chronic neck pain, it was for many years of my childhood.
As long as I could remember, every few afternoons I would have intense pain in the back of my neck, like my spine was going to burst out of my skin. My family took me to many doctors in the hopes we could figure out what was going on. None of them knew what was happening, or knew any way to treat it. It didn’t help that I felt like I was gaslighting myself since it never happened in the doctors office. I lost count of how many doctors tried and failed to find anything wrong. Even with my description and how long it was going on they all told me my neck was fine until one doctor. He didn’t find anything, but he did try to help. He tried, and he succeeded. The pain that had plagued me most evenings was becoming more spaced out and more mild as time went on with his help. Then he died. The only doctor who helped me died.
But he’d done enough. I thought my pain was gone for good since it had been fading out and until recently I was so sure I was free. Then one day I felt it. It’s a very specific type of pain, different from any others I’ve had. It was mild and only for a few minutes but it was back. I felt like crying.
As a kid, I had never thought of my neck pain as something to cry about, it was just my life. I think I only realized I wasn’t ok with it after it was gone long enough to fear its return. I had also unconsciously attached all of my emotional pain surrounding it to violin, the dream I could never achieve given it made it worse. I tried talking about the violin and I couldn’t stop crying. I don’t cry about my pain.
So after all of this fighting, all of this pain, all of this helplessness, the pain was back if only for a short while. I still fear I’m not free. I still grieve I can’t play violin. I may have stopped being affected physically for the most part, but apparently this is something I’ll have to work past.
(sorry for dumping such a long and maybe hard to follow story. This needed to come out)
@CallmeKir
Chronic pain is one of the topics that has a section here! All forms of chronic health issues get included here, so you're very welcome to participate within disability support.
I know how incredibly frustrating it is when doctors can't figure out what's going wrong. That's great you had a doctor who helped and I can understand how awful that must feel to have the issue return and not be able to see the same doctor. Do you have the details of how he helped, or have access to the medical records? Hopefully another doctor will be able to treat you so the pain doesn't become so problematic again.
Hi @CallmeKir,
I do tend to see chronic pain as a "disability". It may not be the first thing that pops into someones head when you say disability, but can be extremely disruptive and debilitating.
I can relate to grieving the loss of a passion. I have had to sacrifice a lot in my life, one of which is no longer being able to play piano. I may not be a classically trained pianist, or even be able to read sheet music for that matter ( I play purely by hearing as I have learning issues/difficulties with theory ) but it was my escape. In fact, one of the reasons why it was so enjoyable to me was being able to hear a song and just be able to feel the notes and automatically be able to reproduce it. There's something about being able to do things intuitively that just lifts one up and strengthens ones spirit.
At any rate, I digress. It's allright to mourn what we lost but at the same time we need to keep moving forward. Even if it means discovering a passion just to have it taken away yet again, the journey often has more value than the destination.
Here's to finding other interests and passions, some of which you may never have discovered had you not have to make sacrifices.