Many milder expressions of CMT and other hideable or “invisible” diseases and disabilities may be denied by the people closest to those who are living with these maladies — a potentially devastating, psychologically defeating, and depressing, gaslit reality that is toxic and abusive. And with CMT-related charities focused on fundraising for “cures” that are far less likely to emerge than they want to admit, it’s easy to fall into the trap of not prioritizing what you can do for yourself now, at any age, ability, or income.
Disease is Not a Journey, War, or Race to Win
Reject the damaging idea of disease as a war to fight and win. Ignore the images of young, even athletic, financially well-supported, sunny optimists who are represented as CMT role models. If you feel alone, excluded, and somehow “wrong” for your “negative attitude,” know there’s nothing wrong with “working through” a tough reality with piss and vinegar.
Just remember, if you’re going through hell the key is to keep going.
Susan Sontag said the clearest and most truthful way of thinking about diseases is without using metaphors. War and fighting or long races are often used as disease metaphors. Sontag “believed that wrapping disease in metaphors discouraged, silenced, and shamed patients” (Wikipedia) — and she was right.
CMT is something we CMTers suffer and muddle through every day, possibly with little support. But you can always do the most for yourself by doing whatever keeps you moving ahead with your life rather than waiting for science or other people to do something for you. It may never happen.
The CMTA has a private WordPress group blog hosted with WP Engine that’s used as an Emotional Support Group at https://esg.cmtausa.org. The group is moderated by CMTA Advisory Board Member David Tannenbaum, a practicing psychotherapist in New York. David has CMT and also writes the “Ask David” column in The CMTA Report. Have a question? Send it to David at firstname.lastname@example.org.
The above information is mostly copied from the CMTA support group blog. You can join it by clicking ‘Register.’ Once you’re admitted, you can post anything — questions, what you’re struggling with, wins you’ve had — anything. You’ll get reply comments from other people who are subscribed to the blog as well, like me! Just be sure when you set up your account to make it anonymous if you want to hide your identity. (If you already have a WordPress.com or Gravatar account tied to your email address, and if you use them on this blog they may reveal your identity and show your picture.)
Disease, Denial, and Family Alienation
I haven’t seen this publicly written about, but I’ve experienced some of these things and have heard similar stories from others.
Some families may…
- …choose to deny CMT by refusing to talk about it, even if a lot of people in the family have CMT. A parent with CMT taking this path may try to impose it on their children and others as a condition of their acceptance.
- …press themselves and their children, siblings, etc. to achieve (or even overachieve) in areas where CMT disadvantages them, without telling anyone. This masking — even closeting — denies disability and pain. (E.g., competitive athletics, beauty pageants, etc. — for fully abled people.)
- …deny, even with anger and threats, that an individual with CMT has any meaningful differences or needs. They may deny it is a disease at all, especially if the person with CMT is the only known case within the immediate or even extended family.
- …refuse to validate the idea that CMT is real and impactful, especially if it is a “mild” to “moderate” case and has not progressed to a more visible or fully disabling degree.
- …blame, exclude, or reject a family member with CMT (or any disease) for their difficulties, telling them to just tough it out and not be so “weak” or “needy.”
- …”diagnose” a family member with CMT even if they have no medical basis to believe this person has inherited it.
- …refuse to seek or try to block diagnosis and support for family members with CMT, or deny a diagnosis requires informing themselves and changing how they think and relate, as a family. A person with CMT may even do this to their own children or other relatives.
- …treat male and female members of the family with CMT differently based on how they believe men and women should be, relative to hardship. (Of course, progressive diseases are more than normal life hardships, and treating them as the same is a part of the denial and gaslighting that can be hard to resist in some families.)
- …blame a parent with CMT for “spreading it.”
- …break up (separate/divorce) or estrange themselves and then act as if a former spouse, parent, or child with CMT does not exist.
Why these things happen and can be hidden from public view for decades — or be treated as “open secrets” inside a family — is a huge topic that needs a lot more attention than it gets in the rare, hereditary neuromuscular, and chronic pain/disease communities — as well as the larger world of medicine and psychology.
It is no mystery at all why the most common comorbidity for CMT is depression.
See Cordeiro JL, Marques W, Hallak JE, Osório FL. Charcot-Marie-Tooth disease, psychiatric indicators and quality of life: a systematic review. ASN Neuro. 2014 May 27;6(3):185-92. doi: 10.1042/AN20130048. PMID: 24654889; PMCID: PMC4034707.
The following is something I left as a comment today (slightly edited and shortened) on the CMTA emotional support blog (mentioned above) in response to a young person with rapidly progressing CMT. This person feels their future as an artist (painter) is in jeopardy. (Their post motivated me to write this post too.) It’s not surprising to learn someone in this position has developed an eating disorder, depression, or other problems as parents and other family members refuse to acknowledge their situation.
Depression is the most commonly reported other condition along with CMT, apparently as an effect of it for reasons we all find obvious but sometims not others. I’ve also experienced family denial and alienation. This is seldom discussed, but I believe (from many stories) it is common. I think we should tell and share those stories even when they do not have “happy endings.” You are not alone!
You write well and are very self-aware — this matters and helps! Have you considered writing as an “art” to explore? That’s what I do, often with poetry. It also helps to find people with greater needs and worse problems you can help in some way. (If anyone else would like to share stories of dealing with family denial of CMT, please get in touch with me through my blog, https://cmt.blog. A contact form and my email is there.)
An eating disorder is serious. Depression can be too. I hope you can find a therapist who can help you address them both and what we understand is likely the underlying cause — a parent who is unable to take on feelings of pain and guilt over their child’s needs and suffering. Have you tried to address this directly to your dad? Other family members? Friends? “I need you to admit/validate my condition/feelings/needs…and I need help coping if only by talking about it together.” If this is refused it may be scary to step out on your own and find your people, but that is what you will need to do rather than remain tied to a dark place that may not change.
Do tell your story. Find those who will listen. The organizations fundraising for “cures” like to put a shine on everything and suggest cures are coming any day. They show us youthful faces of coping and overcoming — typically from people highly supported by others and the financial resources many lack. This does us all a disservice. [….]
Good Metaphors: Come out of the gaslight. Come out of the closet. Come into the light.
I have an unknown form of neuromuscular disease, presumably CMT, which is obvious enough from the standard clinical presentation of peroneal neuropathy and muscle wasting. Recent genetic analysis has actually muddied the waters rather than clarified them with regard to what exactly I have been dealing with my whole life since I seem not to have one of the known types.
Nevertheless, I never had a parent appropriately respond (or even begin a proper diagnostic path) to an obvious progressive disability even when it was clear what the general category of causes was. I was too young and out of the loop to know this or be my own advocate at the time. I was even compelled to take up cross country and track in high school, which was damaging on a lot of levels. Even trying to run at a sub-average level in a few years became impossible. I knew, semi-consciously, that I wasn’t getting what I needed, and that this was a form of abuse, but that knowledge was buried and inarticulate. I couldn’t even see my feet and worst ankle as obviously, grossly abnormal for many years.
Ironically, a long marriage involved a partner identifying the clinical symptoms and matching them to CMT (in my early 40s) — and yet refusing to acknowledge and support the appropriate, indicated response. This led to a situation where I still did not pursue medical diagnosis and other supportive care (including self-care) because of the mix of denial, believing I didn’t deserve it, not being able to afford care (in the US), and internalizing blame that it was my fault and I should be a provider always providing more than I was — for others, not myself. PTSD, depression, and anxiety are appropriate responses to situations like this, especially when more intense things happen.
Do for yourself, but be wise.
I will say, if all sides of your family are hostile to the idea of you needing anything from them, you may be better off doing as much as you can for yourself and being careful what damage and discomfort you reveal to whom. If you have limited means of support and have to work in a highly competitive space, no matter how progressive coworkers and employers may represent themselves, exposing vulnerability (maybe especially as a man) may disadvantage you or get you hurt.
But you will also be better off getting yourself out of such a potentially disabling and poisonous daily context. Be smart, but don’t go in the closet. If you were put there as a kid, like I was, it’s not your fault. But come out. If you are reading this, the door is already open a crack — you just have to push.
Family members are often our greatest abusers. Parents. Even mothers. Especially in American society, to say this is to violate a taboo, but it is a dark and all too common truth. Do not take it, do not stay with it longer than you must, make the break to leave and take what you need — don’t wait for others, try to be your own champion.