CMT Blog

Alongside research for treatments and cures, the CMT community needs to take a hard look at some elephants in the room — the most common and most remediable pains and struggles impacting the quality of our daily lives.

Young Lee has another good article on the challenges of social isolation and loneliness for people with CMT — and so many others. With the US Surgeon General calling for attention to loneliness and isolation as an epidemic, it’s clear the problem goes far beyond any single group.

It’s not even CMT that is the main driver of these problems for people who have it — it’s what often comes with CMT over time, with age, and as an “invisible,” poorly understood disease. Neuromuscular diseases drive physical and emotional pain to higher levels in people who have it or related issues.

CMT Intensifies Any Downward Spiral

It takes very little familiarity with CMT groups and individuals online via social media to see there are large numbers of people who lack supports, are stymied in their struggle to get them, and whose social and economic situation — particularly in places committed to dismantling or denying public healthcare — all but ensures it’s not going to get better for them.

Also at CMT News, Patricia Inácio writes about another study showing neuropathic pain is tied to social isolation and poor life satisfaction, as if that is any surprise. The conclusion that chronic pain needs greater attention and treatment is obvious to anyone who suffers it.

Of course loneliness and a diminished quality of life are not restricted to neuropathic pain either. Pain also needs to be understood and faced in a full, holistic way that’s not restricted to the physical realm alone, as any pain practitioner will tell you. A focus on medication and “cures” or an “off switch” for pain are not just reductionist; they run contrary to science and good medicine, often doing more harm than good in the pursuit of an illusory life without pain rather than positive coping and pain management — or dare I say “meaningful suffering.”

Pain, Health, and Isolation: A Vicious Cycle

There are a couple of recent studies I’ve written about showing depression is the most common comorbidity with CMT, and adequate exercise is a challenge for anyone with impaired and declinign mobility. This leads to all the problems associated with weight gain, especially the increased likelihood of sleep disorders, mainly sleep apnea. These things feed each other so they create a cycle that’s difficult to break out of.

Meanwhile, the US Surgeon General is calling on people to deal with epidemic loneliness amid soaring deaths of despair that disproprtionately take the lives of working class, poor people, young people, black peoole, and women. There are much larger forces at work, and people with health issues, disabilities, etc, are not in a strong position to deal with them.

It takes very little familiarity with CMT groups and individuals online via social media to see there are large numbers of people who lack supports, are stymied in their struggle to get them, and whose social and economic situation — particularly in places committed to dismantling or denying public healthcare — all but ensures it’s not going to get better for them.

CMT and the Blind Eye of Affluence

Demographically, North American CMTers who show up for community Zoom events and participate in social media generally seem to be an older group of predominantly white people, which may be due to some self-selection — if they’re out of the workforce they may have greater means and time to participate. But this is also a demographic that experiences the greatest social isolation. One makes fewer and fewer friends with age. Add high divorce statistics, mortality rates increasing with age among family and friends, and the long-term effects of the pandemic which include rising crime rates — aging alone is like trying to resist the inevitable downslope of life with even greater burdens if disability, disease, and lack of support play into it.

There is a kind of de facto censorship on showing and discussing how I suspect the majority or near majority of people with CMT live, simply within rich, northern hemisphere countries. We hear almost nothing about those in the global south.

Meanwhile, the major CMT community organizations focus on seeking future cures to the near exclusion of mundane coping and occupational issues that are needed and practical now. The people depicted most in the “CMT media” I’ve taken in over the years are probably much younger than the average and well-supported, even quite obviously affluent people. There is a kind of de facto censorship on showing and discussing how I suspect the majority or near majority of people with CMT live, simply within rich, northern hemisphere countries. We hear almost nothing about those in the global south.

Stop Censoring Who We Really Are, What We Really Need

So I note the contradiction in saying, as people often do, that we should each individually try to bootstrap ourselves into greater social support and inclusion. That’s not really possible — it requires the presence and acceptance of others. It has to be a group effort. One has to be willing to befriend and support others too. Not everyone is in a position to do this without there being an actual family or community that cares about them in a world divided by politics, the “polycrisis,” long term economic contraction, inflation, unemployment, hostility to social welfare programs, generalized sociopathy, wars and violence.

That’s a big list of downers you can see every minute of every day in your news media — but never the CMT media, but it’s not because we’re addressing the problems where we can, on the level of people’s basic needs. Why?