Fostering connections: It’s good for our health
Combating loneliness and social isolation is important for those of us with CMT
Those of us with Charcot-Marie-Tooth disease (CMT) know it touches nearly every aspect of our lives. That’s true for anyone who is similarly disabled or has a chronic condition.
For CMTers, the disease symptoms affect our mobility. Many of us have sleep apnea, which can lead to daytime exhaustion and fatigue. And our reduced grip strength and dexterity create struggles in performing everyday tasks, such as buttoning up shirts and tying shoelaces. Each of these is an individual struggle worthy of being addressed on its own.
Recent conversations with friends and co-workers, however, have prompted me to consider the cumulative effects of these symptoms — particularly on our social lives. And it’s made me wonder this: Are many disabled people, including CMTers, predisposed to being lonely and isolated?
It’s not a trivial question. Some studies suggest that loneliness can be more dangerous than obesity and physical inactivity. One study suggests that chronic loneliness can increase a person’s likelihood of death by 26% and that social isolation can be even worse.
Loneliness and isolation are common problems among many these days, disabled or not. But I can’t imagine being disabled makes things any easier, when many typical social activities aren’t as accessible as they should be.
Sports activities are difficult for many CMTers, for example. Even those with mild symptoms can have trouble finding players in competition-based sports, such as basketball and pickleball, who are similar in skill. Climbing activities can be challenging, too, because CMT symptoms affect grip strength and can heighten ankle and foot pain. Yet sports are a significant way for folks to connect and find community.
Restaurants, another hub for social gathering, are also not without certain challenges. Many times when dining out, I’ve encountered bathrooms that aren’t friendly to rollators or wheelchairs. And chopsticks and the dainty amuse-bouches at fancier restaurants can alienate CMT diners.
Concerts, particularly at small venues, can often be standing room only. Stores can have cluttered aisles. And some video games present challenges for disabled communities because they lack helpful in-game settings or pose difficulties in finding accessible hardware.
Sports, restaurants, concerts, and gaming all seem to me to be pillars in our society for socializing and connecting with others. Yet I find that disability can sometimes hamper a person’s ability to participate in every one of these areas.
That’s not to say that all of us in the disabled community are doomed to be socially isolated and lonely. But just as we consider the physical dimensions of our health and well-being, the social dimension deserves recognition, too.
And perhaps CMTers like me need to be more intentional about reaffirming our social connections. It’s worth remembering that listening to and being with our friends, family, and acquaintances is good for our health. The experience of meeting other people and finding community — whether through religious organizations, reading clubs, fandoms, or groups of other CMTers — is profound and enriching.
We owe it to ourselves to invest in our own social well-being. No, it’s not a cure. But making sure we connect with others is, in a real way, yet another method of fighting this disease. And we shouldn’t diminish the importance of it.
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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Dan
There are a couple of recent studies showing depression is the most common comorbidity with CMT, adequate exercise is an issue, which leads to all the problems associated with weight gain, especially the increased likelihood of sleep disorders, like sleep apnea. These things feed each other so they are difficult to break out of. Meanwhile, the US Surgeon General is calling on people to deal with epidemic loneliness and soaring deaths of despair. 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. Demographically, CMTers who show up for community Zoom events and participate in social media generally seem to be an older group, which may be due to some self selection — if they're out of the workforce they may have the means and time to participate. But this is also a demographic that across the board experiences the greatest social isolation. One makes fewer and fewer friends with age. Add high divorce statistics, deaths increasing with age, and the effects of the pandemic — 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.
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" are probably much younger than the average and well supported, even quite obviously affluent. There is a kind of defacto 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.
So I note the contradiction in saying we should individually try to bootstrap ourselves into greater social support and inclusion. That has to be a group effort. One has to be willing to befriend and support others, not just seek others to do this for them. And 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 and inflation, unemployment, hostility to social welfare programs, generalied sociopathy and violence.