Glimpse into the Life of Living with a Rare Diseaseby RNE submissions on 03/31/17
By Joanna Mechlinski
Having a rare disease is hard work. There’s the obvious burden of the actual symptoms, of course. But there’s also the unexpected angle of becoming an unofficial ambassador for your disease. When I was first diagnosed with polymyositis, an autoimmune disease that causes atrophy of the proximal muscles, I had never heard of it myself. Given the fact that it only affects about 1 out of 100,000, that was hardly surprising. So it stood to reason that my family and friends hadn’t, either. But of course, unlike them, it was something I was forced to learn about, and in a hurry.
That’s why it’s so important to use all the internet resources available to us. As I have said to numerous friends, if I had to have a life-altering illness, I am so very thankful that it’s during the 21st century. Not only do you have easy access to all sorts of medical information, from hospitals to prescription side effects, but you can also connect with other people in similar situations. Even fifty years ago, the odds of meeting more than a couple of those “1 out of 100,000” others diagnosed with polymyositis would have been slim. But today, thanks to social media, blogs, forums and more, you can share information with people around the world.
A small wave of anxiety washes over me whenever I step foot out of my own home. Even if it’s a beautiful sunny day to the rest of the world, my personal landscape is covered with invisible snow piles and sheets of ice. Normally, it would take just a few moments to walk from my front door to the car, but with the added obstacles it takes considerably longer. Gingerly, I keep placing one foot in front of the other; taking one careful step at a time, praying all the while that I won’t stumble. If I do fall, I lack the muscle strength to right myself unassisted.
Very few people could truly understand what it’s like to live this way, every day, for decades. Even more disheartening, I look perfectly average at a glance. As many people with various rare diseases know all too well, it’s truly frustrating to make others fully comprehend your struggles when they are largely invisible to them. For some reason, if you walk with a cane or use a wheelchair, society at large seems to accept the fact that you might need some help. But if it’s hidden inside? Then you’re fine, of course; or, at best, you might have a few struggles, but certainly you’re exaggerating their extent.
Sure, I get upset whenever I encounter this sort of thing. Who wouldn't? But again, that's where I turn to the internet. I can vent with my rare disease friends, I can search the news to see if any new developments are in the works. And - the most important part of the cyber world to me - is that anyone can help spread awareness. Just because there aren't many Google hits about your particular rare disease doesn't mean it has to stay that way! Your voice is so important and necessary in helping educate others. Tell your story...all of us have a story that is worth telling. Who knows? Maybe some small detail you share will resound deep within another person's soul, giving them the emotional support they need to keep moving forward. Or maybe it will be the one clue that helps a doctor or researcher finally put the pieces together to develop a life-altering new treatment or medication.
Above all, take heart in the endless possibilities the internet holds and represents for rare disease.