It’s not surprising to learn from another (and more detailed) study (summarized here) than I’ve seen before that people with CMT are very often dealing with depression and/or anxiety, especially with more severe versions of the disease, and many go “untreated.” “Untreated” in this case means “unmedicated,” and there is a lot more that can be done to prevent or mitigate mood disorders than take medication, which should be the preferred means of coping, if possible, especially in less severe cases. It’s unfortunate that other forms of “treatment” or the reasons for not using antidepressant or anti-anxiety drugs were not explored.
I also look forward to studies that investigate the contributing causes and contexts for depression and anxiety in people with CMT. The study I’ve linked to above concerns an Italian population, so I wonder if this group might experience overall better health care and social inclusion than other populations, like those in North America, where those supports are often markedly strained or absent. That may be an increasing reality across the board these days.
My experience and anecdotal gatherings from others indicate the psychological burdens associated with CMT typically have to do with diminished or non-existent access to family, community, medical, and therapeutic supports. The ways in which many forms of CMT can develop and act subtly, the ways CMT can be hidden or “invisible,” and the ways “disability” classifications are often inadequate or in fact further disabling will inevitably create stressors, stigmas, and motives to deny or defer a need for special interventions or even diagnosis.