Living with CMT doesn’t mean I exist in a separate world
We may have different perspectives, but we're all human
Sometimes it feels like some of us live in separate worlds with different rules and dynamics. I’ve noticed this while chatting with friends, co-workers, and even strangers about Charcot-Marie-Tooth disease (CMT), my symptoms, and what it’s like living in a society not quite optimized for people with disabilities.
Indeed, our experiences can be so different, even regarding the most mundane tasks, that I occasionally get the impression that those of us with disabilities and chronic conditions live in a completely different reality than young, able-bodied people do.
One stark example I’ve found is in our expectations of what’s achievable with a credit card and a trip to the pharmacy. I’ve long since come to terms with the fact that CMT has no cure. I’ve learned to expect that symptom management will likely be an ever-present concern in my life.
Existing therapies for CMT largely focus on assuaging pain and staving off further deterioration of abilities. These practices may include a healthy diet, exercise, massage, and physical therapy. While the impact of such therapies shouldn’t be minimized, there still aren’t any drugs available to manage or treat CMT.
Some healthy people may expect an illness to be treatable simply by taking some pills. However, CMTers can’t just go to our local pharmacy, pick up a prescription, and consider our disease management complete. Instead, we must integrate the aforementioned therapies into our everyday activities.
Different perspectives, same world
Another difference is in our understandings of what’s “normal” for our body, or our default physical state. Living with CMT, I don’t view my body as a reliable machine that will function as expected unless an outside force interrupts its homeostasis. Things can go wrong, and there aren’t always external triggers.
Although my interactions with young, able-bodied people often remind me of the challenges of living with CMT, these discussions are still important for all of us. While it can seem sometimes as if we live in different worlds, that’s simply not the case. We’re all connected. Besides, it’s possible that some of these young, healthy individuals may one day develop a disability.
Only through the acknowledgment that we live in a shared world can we begin to improve living conditions for everyone. We should all want to recognize the things we take for granted so that we can become better advocates. We should all want a more accessible world.
I believe researchers will eventually develop treatments for CMT, as well as for countless other conditions that cause so much heartache. I believe we can work toward a future in which our abilities (or disabilities) don’t affect our dignity or freedom.
So I welcome conversations with those seeking a glimpse of life with CMT — not because I live in some kind of alien world, but because we all live in the same one. And each of our experiences and perspectives is just as valuable as the next.
Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.
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