Very few people in my life know about my history with chronic pain, for a few reasons. Partly because I dealt with it for a long time from a very young age and therefore was very used to it, and partly because I hated the response I would get from almost everyone. The confusion, the disbelief, and more than anything - pity.
Chronic pain, in all its forms, is one of those “invisible illnesses”. Meaning you’d never know that someone was ill just by looking at them.
A little background on my condition…
When I was 10, I started having unusual pain in my neck and shoulders (pain like when you sleep badly on your neck...but all the time). Doctors told me it was growing pains or all in my head - a very common doctor response to chronic pain. This pain worsened and spread throughout my body over the years. When I was 16, it was everywhere and very intense (again, like you slept on your neck wrong. But this time worse. And also I slept on my whole body wrong). But I was so used to dealing with it that I barely thought about it. I started seeing doctors all over the US and eventually I was diagnosed with Reflex Neurovascular Dystrophy (RND).
RND is a condition of the sympathetic nervous system in the brain, which controls your stress response. Essentially - and I’m still a little fuzzy as to how my own condition works - when you, let’s say, fall on your arm, your body sends a pain response from your arm to your brain, telling you that you’re in pain. Eventually those signals stop sending once the pain subsides. With my condition, there’s a hiccup in that reflex of responses, and the pain signals recycle themselves. So the pain is neverending.
(Sorry, being cavalier is my favorite coping mechanism)
Nothing changed after I got diagnosed. I just kept on dealing with it. At this point, my pain was so severe that I couldn’t wear jewelry, collared shirts, scarves, sunglasses, or anything else that unnecessarily touched my skin. I couldn’t walk or stand for long periods of time. I had to be extremely methodical about my activity and what clothes and shoes I wore each day to minimize the amount of pain I’d be in. I guessed that by age 30 I’d be in a wheelchair.
At age 20, I went to the Children’s Hospital of Philadelphia - to the same doctor who diagnosed me - and was admitted to an inpatient program. The treatment for RND is vigorous, grueling exercise, which is meant to give the body a high and continued exposure to pain that the pain signals essentially reset themselves.
I spent 5 weeks at that hospital. For 8 hours each day, I was exercising like I was training for the Marines. I mean some really out-there type of intense shit. It was one of the most difficult things I’ve ever done. Any of the young people who have been through that program (and this condition affects mostly adolescents) will tell you that it’s making the constant decision, moment by moment, that you want to get better just a little bit more than you want to quit.
And trust me when I say that this type of pain combined with this type of exercise really makes you want to quit.
Those 5 weeks were my trade for getting my life back, and I’d do it all again if I had to. I learned a lifetime of lessons during my time there, from myself, my physical therapists and doctors, and the many, many patients I met there...all of whom (unlike me) were battling life-threatening illnesses as young children.
Since recovering from disordered eating, I’ve made some fascinating connections between my experience with chronic pain and my beliefs about my body.
1. I was at war with my body. I wanted nothing more than to walk around outdoors without needing a break to massage my knees and hips from pain. I wanted to wear sandals without worrying about how badly my feet would hurt later that day. I just wanted my body to be like everyone else’s. Similarly, when dealing with disordered eating and warped body image, I fought with my body constantly. I wanted her to be thin like “everyone else”. I wished she would drop the weight I had been desperately trying to rid myself of for years. There was never peace with what my body was giving me.
2. I cannot allow myself to be defined by my condition. Be it chronic pain or disordered eating, I am not either of these things. I spent the entirety of my experience with both of them being totally defined by my body’s incapability to do what I thought other bodies did effortlessly. I was always less than, handicapped, or plain worthless because of how much (I thought) my body sucked.
3. It was vital for me to do the things I wanted to do, regardless of what my condition was telling me. I let these things hold me back so deeply. I wanted to be a runner for years, but felt like I couldn’t because of my chronic pain. I wanted to feel sexy in a bikini, but decided that my stomach and hips made that dream impossible. The absolute biggest lesson that my doctors taught me at the hospital was that I could no longer make decisions about my life based on my chronic pain. If I wanted to wear sandals, do it. If I wanted to go for a walk for 2 hours, go outside and walk. Similarly, my ED can’t keep me from feeling beautiful, or going on dates, or enjoying food. I can’t let myself be held back by this anymore.
4. I can’t blame everything on my body, even though it’s convenient. It took me 10 years of chronic pain to realize this, but I would often blame my emotional pain on my physical pain. Any bad mood could easily be deflected onto my body and how it was ‘acting up’ again. With my body image struggles, it was easier for me to binge eat and subsequently spend the night hating my body for my life’s problems than to deal with my problems directly.
Chronic pain is no joke. If you know someone who’s struggling with it and they open up to you, just listen to them without judgment or sympathy.
Trust your body’s wisdom, but also identify when you’re making excuses because of what you perceive your body to be doing to your life. Own your story!