I have never known a life without pain.
That sounds extremely pitiful and maybe a little dramatic even, but it’s true. I haven’t. Pain has walked by my side for the past twenty-six years and eight months. Some days, the pain is bearable and I feel invincible. Other days…not so much. Other days, the pain is all I can think about because it consumes and overwhelms me. It envelopes me like a thick, impenetrable fog.
I was diagnosed with Hereditary Multiple Osteochondromas when I was eighteen months old and I have spent the duration of my life trying to find a way to manage the chronic pain symptoms of this disorder. I have had so many surgeries that I lost count after surgery number fifteen. I’m pushing twenty surgeries, I think.
Along with the surgeries and the pain, I have depression and anxiety, and I have struggled with my body image and my self esteem for years. I have worked extremely hard to get myself to the point I am today — where I can look at myself in the mirror and not totally hate the person staring back at me. I used to think that I was weak. I couldn’t — and still can’t — do the same things that my sisters and peers could do, at least not with the same ease they exhibited.
But I am finally in a place where I no longer think the girl in the mirror is weak: I understand her. She is resilient. She copes with things most people can’t imagine.
I used to hide my MO from everyone around me. I used to shy away from outfits that revealed my scars or bone growths. If I missed a huge chunk of school for surgery, I was tight-lipped about where I’d been. I had several opportunities to educate those around me, but I didn’t want anybody to know. I was ashamed of my differences.
Looking back, I can’t even explain why I felt that way. Maybe it had something to do with being the only person in my family with MO. Maybe it had something to do with the fact that I thought I was the only person in the world with this disease. I was in grade six when I finally discovered that there were other people out there living with the same disease. I was in middle school when I finally got a chance to actually meet someone with MO.
My two beautiful sons inherited Multiple Osteochondromas, and I honestly think that their diagnoses helped propel me into actively speaking about my struggles with this disorder. I didn’t want them to ever experience the isolation I once felt. I didn’t want them to feel like an alien within their bodies. I didn’t want them to resent the fact that they were built differently. I also didn’t want them to feel as if they couldn’t talk about rough pain days or the struggles that they will inevitably face because of this disease.
I worry about their futures. I worry about the effects surgeries and pain may have on their mental health, and I worry about them one day struggling to advocate for themselves in a confusing medical world that often lacks the resources they may need. I worry that they will struggle to find employers that will understand the limitations they may have as a result of their MO.
Today is Rare Disease Day, a day where millions of people living with rare diseases speak up and share their stories about how their rare diseases impact their lives. This campaign seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, and health professionals.