Finding productive ways to channel my frustration with CMT
Supporting my community helps me face the profound burdens of this disease
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I recently got new ankle-foot orthoses (AFOs). After losing a significant amount of weight over the years — in part because my AFOs allowed me to walk more — my previous pair no longer fit. The whole process went as well as I could have hoped. However, it brought to mind the many ways those of us with Charcot-Marie-Tooth disease (CMT) and our support networks must contort our lives and stomach certain financial burdens.
Many activities that are mundane for others may be difficult or impossible for us CMTers. This alone is disheartening, but such realities can also exacerbate feelings of loneliness and isolation.
A CMT life is often filled with appointments with various medical specialists, medications, and supplements. Our sleep quality and energy levels are often in constant flux, greatly affecting our ability to rest and recover from even everyday stresses.
To function in day-to-day life, many of us use assistive devices — canes, rollators, grips, hooks, specialty shoes, and specialized breathing devices. Chronic pain and inflammation are everyday adversaries for some CMTers.
Even maintaining a healthy diet can be difficult due to symptoms like fatigue.
I’m often astonished by the profound impact CMT has on people’s lives. There are abundant data that demonstrate the disease’s financial and emotional burden. It’s as if our lives are constrained within the orbit of CMT. At times, I feel like we’re victims of some cosmic injustice.
How do we reconcile such feelings?
Ultimately, each of us must find our own answer. I know some CMTers find help through therapy and the process of exploring how they shape their identity while confronting the underlying reasons for their emotional discomfort. Others find purpose and comfort through spiritual guidance.
However, it’s also important to acknowledge that, sometimes, life with CMT simply sucks. Stubborn insistence on positivity isn’t always a virtue.
Still, I’ve found productive and edifying ways to channel my frustrations, and I think that’s worth celebrating.
Finding support among the disability community
When I consider the positive experiences that CMT has brought me, the joy of connecting with the disability community is one of the first things that comes to mind.
For much of my life, I believed this disease was an annoyance I’d learn to manage. However, connecting with other CMTers made me realize that our community is worth investing time and energy in. I recognized just how many people would benefit from greater accessibility, care, and compassion.
Establishing relationships across disability communities has also been rewarding. One in 10 people has a rare disease. But there’s a difference between acknowledging a statistic and experiencing it firsthand through personal connections.
Hearing different perspectives from the wider disability community has undeniably colored my understanding of diversity, solidarity, coalition-building, and justice.
Supporting CMTers
After recognizing the profound impact that better CMT care would have, the natural next step is to find a way to contribute to such efforts.
There are a handful of CMT-focused support organizations, each with its own approach. I’ve come to appreciate how this allows every supporter to find an organization that resonates with them — and, together, they form a wider coalition. For profound change to occur, we need a broad front of advocacy.
Growing empathy
As I’ve grown and matured, I’ve learned each of us is fighting our own battles, whether we have a disability or not. It’s difficult to fully appreciate what another person may be going through, the depth and texture of their individual struggle.
What we can do is listen, remain willing to learn, and be tender enough to feel. Each person we encounter presents us with a learning opportunity, a chance to practice love and care.
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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