Navigating uncertainty while living with a rare disease
A psychologist who specializes in rare diseases offers insight
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Worrying can be such a waste of imagination. A friend recently reminded me of this common aphorism. Instinctively, it’s a sentiment I find agreeable. However, I often wonder what such a belief actually looks like in practice. Life, after all, is filled with ambiguity.
How do we each find the best way to respond to this fact of life?
Those of us with rare diseases like Charcot-Marie-Tooth disease (CMT) are very familiar with reconciling uncertainty. Indeed, it’s hard for many in rare disease communities to forget that life is fragile and few things are ever guaranteed. However, just because we’re familiar with this reality doesn’t mean it’s not a struggle.
Recently, I spoke with Al Freedman, PhD, a psychologist who specializes in therapy for people living with rare diseases, about how he helps his clients reconcile the uncertainty of life.
“None of us know what the future will hold, how long we’re going to live, what’s going to happen in our lives,” Freedman said. “But when we have a rare disease, it forces the questions in a way that’s very, very different.”
Those of us with CMT understand that, over time, our symptoms will likely progress and new symptoms may appear. Without a new miraculous cure or treatment, our bodies will never overcome our condition. And we can reasonably expect our strength and mobility to deteriorate.
When facing such a possible future, frustration, anxiety, fear, and worry feel only natural. To assuage such emotions, we prepare as best we can by focusing on what we can control. We brace ourselves (oftentimes literally). We do our best to maintain what strength and mobility we have through exercise and physical therapy. We respond to pain and fatigue as they come, though we know they’ll likely always be a part of life with CMT.
We connect and build networks of support with other “CMTers,” and we build solidarity when we show up for members of the wider disability community. We rally behind efforts to spread awareness and raise funds for CMT research.
Nonetheless, there are moments when I feel personally overcome, and I feel an urge to try to protect and shelter myself. Questions and doubts creep into my mind.
Will I be able to afford the care I may need in the future? What if I injure myself at the gym? Who can I depend on should my symptoms debilitate me even more? What can I do to insulate myself from danger, risk, and the progression of CMT symptoms that feels inevitable?
Many times, I feel forced to admit I don’t have as much agency or control over my life as I wish. And, ultimately, I’m often confronted with some form of the same question: What sort of life do I want for myself?
Even if a perfectly safe and secure life is attainable, would such a life be desirable? Are we meant to live such a life?
“Rare disease forces us to come to grips with existential questions most people don’t need to grapple with to the same degree or as acutely and as abruptly and as immediately as we [in the rare disease community] do,” Freedman said.
We each need to balance the extent to which we allow fear and worry of the future to guide our decisions — to gauge how much of our present energy is directed toward the future. It’s on each of us to define our core values, the ones we use to guide actions.
“Pause, ask yourself these questions, chew on it with yourself and with other people, with a therapist if you need to,” Freedman added. “Everyone’s answer to these questions is going to be very different. There’s no one-size-fits-all.”
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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