When You Realize the Pain Is Here to Stay

After years of painful, expensive tests, I sat in the waiting room of yet another doctor’s office. I’d been in worsening pain for years with no answers. I’d floated through time for a while, never quite knowing what day or what month it was. Lost in a fog of undiagnosed fibromyalgia, Ehlers-Danlos syndrome, and well-diagnosed PTSD, I had given up. I wanted this pain to be temporary. I wanted to know I could go back to what I loved doing. I wanted to know this wasn’t going to be my life forever. I wanted, so very much, to live.

I’d finally broken down and found a lawyer to help me with applying for disability. Disability I wasn’t sure I deserved, but my husband told me I should try anyway. This doctor’s visit was to try, yet again, to get a concrete diagnosis of fibromyalgia. They’d done the exam so many times I could almost feel their fingers jabbing into the tender points scattered around my body, but it kept coming back as not enough.

When my doctor gave me the diagnosis, the reality that I would never again feel “normal” settled on me like a sack of rocks. Simultaneously, relief and sorrow poured through me. On one hand, it validated my pain. Yes, I could tell the world, I was in pain. It was real. I wasn’t making things up so I didn’t have to work or do chores. I could throw in their faces this paper with the diagnosis. On the other hand, the life I’d known was over. The chapter where I could waterski, ride horses, hike, do martial arts, swim and dance was over. Closed. Gone.

It wasn’t new news. But somehow it sat differently. Heavier. I’m still trying to cope with the reality that my life now feels narrowed to my computer screen where I get to hear about and watch other people doing the things I once could. Don’t get me wrong, I love seeing my friends happy and having fun, but it’s a little different now. Every time I see one of my friends post a photo from a hike, my heart tightens a little. It’s not jealousy — I want them to be happy — but it’s mourning for a life I can’t have anymore.

Coming to terms with that reality is hard. It’s been over a year since it hit me for real, and I’m still wrapping my head and heart around it. I’m also still trying to process the fact that it’s only going to get worse as I get older. I will never be “better.” In some ways, this kind of thing is a blessing. It makes you appreciate the good days more. It teaches you lessons in endurance and time management. It teaches you self-care, and it teaches you patience. But pain is a tough taskmaster.

You will mourn the life you had before your disability. Heck, you might even go into therapy for it. I am. Processing that kind of change in your life is brutal and painful. You can get through it, and it isn’t the end of your life. I might not be able to hike or dance or ride horses, but I can write my fingers off. I can also play music. I have my church family. I have friends who spend time with me even though I feel like I’m boring to spend time with. It’s not the same, but it doesn’t have to be all bad. You can find equilibrium, and you can find happiness in the quiet moments.

I think everyone with a chronic disease or injury they haven’t had their whole life (or that hasn’t really affected them their whole life) goes through this. It’s OK to mourn. It takes time to wrap your head around what your new life is and what it means to be you. Changing your identity is hard, and it requires work, time and effort. But it will happen. You will be you. You will just be a little different “you” than before.

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