Life moves at a very fast pace. As someone with cerebral palsy and chronic pain, I know that all too well. I try my best to keep up with others because I am determined, but often that means pushing things down—the pain and emotions.
Mostly, my chronic pain is in my hips (near the bursa sac for the more medically-minded people). I have had it for almost seven years now, which feels like a very long time. Because my pain doesn’t really change, I tend to believe that it is pointless to complain. I’ll always have the same thing to say: “I’m hurting.” I try to keep going and ignore how I really feel about what is happening to my body.
You never really get used to chronic pain, regardless of how long you’ve had it. Because it is my new normal, I try to adapt to it. Spoiler alert: In my mind, “adapting” to the pain means trying to pretend it isn’t there. Does that ever work? No.
The pain in my hips is aching at best, debilitating at worst. However, as long as my organs were intact and my joints weren’t wearing down, I told myself I could handle it. My legs have always been the part of my body that I’ve gotten used to not being the way I wish they were. Hip pain is just a very painful reminder of that.
Two weeks ago, though, the fingers on my right hand turned bright red and began to swell. Soon it hurt to bend my fingers. Typing quickly was a struggle. Opening things got harder. Buttoning my uniform shirt made me wince in pain.
I do so much with my hands, and the soon undeniable fact that I was losing functionality made me mad and desperate. I don’t have an answer to why I have chronic hip pain. I couldn’t stand it if I never got an answer for the pain in my hands.
Then I went to my hydrotherapy appointment. Hydrotherapy is a form of swimming therapy that works well because you don’t have to bear as much weight in the water. Everything is looser. I move so much more easily in the water, and as a result I can usually ignore my pain for the time being.
Not that day. I was at a breaking point. My fingers were swollen and aching, I’d had to type and write a lot, and the hip pain that stayed with me was relentless.
“I’m so tired of being in pain all the time,” I admitted in a rare moment of exasperation and utter exhaustion. “It’s really, really hard.”
I shut my mouth, feeling horrible that I was complaining to the person who was trying to help me feel better.
“I’m sorry,” I apologized. “Now I’m complaining to you.”
My PT swam alongside me and said the words I’d needed to hear for years: “Don’t apologize for complaining to me. I need to know if you’re in pain. You can’t bottle that kind of emotion up; it needs to go somewhere. Talk to me, talk to anyone. I don’t understand your pain completely, but I know it’s hard.”
Such relief coursed through me in that moment. I was so tired of saying “I’m fine” when I wasn’t, forcing a smile when I wanted to scream that I wasn’t supposed to feel so old and my legs were betraying me.
I grieve that I have chronic pain. I skipped right over the denial stage; pain like this is hard to deny. I waver between anger, sadness, and acceptance.
Chronic pain is called “chronic” for a reason—it doesn’t go away. So really, I have no other choice but to accept my pain.
Still, I miss the person I was before my leg pain took over, although I don’t remember who she was. Someone who was a lot less irritated, probably. The person I was before could do more, just because I didn’t have so much pain inside me. I miss that girl. I want her back.
I miss walking around and feeling spasticity, but no aches. I miss being able to tell my family that I wasn’t hurting and meaning it. I miss being carefree about a diagnosis. Now I care because I want answers.
I’m angry because I don’t want to be in pain for the rest of my life. I’m sad because of what I’ve missed out on. I am, at least, relieved that I don’t have to bottle this up anymore. It’s okay to grieve having chronic pain. I’ve heard the old adage “You either laugh or you cry”. It is healthy to laugh at times, but it’s okay to cry sometimes, too.