September was CMT Awareness Month. I decided to use my blog to raise a bit of CMT Awareness by doing an “alphabet challenge” – blogging a letter / key word of the things I face with CMT and as an athlete with CMT. I didn’t make it through the full alphabet in September so I am continuing my challenge through October. Today is brought to you by the letter V. I hope my blogging will help you to learn more about CMT – the most common but least well known hereditary nerve disorder – and me. And I hope this will also help to raise funds for the Charcot Marie Tooth Association to support its efforts to find a treatment for CMT. You can join me in learning more about CMT by clicking onto www.cmtausa.org and of course a donation would be wonderful too!
Last week was Invisible Disability Week, and in September we had Invisible Illness Week.
Why invisible?
Any condition that leaves people saying “but you LOOK fine” falls into the invisible category. This includes conditions that lead to fatigue and pain, such as CMT.
Typically what people mean when they classify something as visible is that it can be seen. But I think we need to think more broadly.
What is visible?
In the Oxford English Dictionary, the third definition of “visible” is the one that captures the meaning I like the best:
That can be seen under certain conditions, at a certain time, or by a particular person; in sight; open or exposed to sight or view.
And what are those conditions which transform the invisible to visible? The way that I make my CMT visible is by being OPEN about it. By sharing. By clearly expressing how it impacts me, what my limits are. And by being profoundly unapologetic about the things that I am willing to do, and not willing to do, when it comes to managing my own health and well being.
I choose to make CMT visible to those around me – and in doing so I help to shape and spread CMT awareness. My own little bit of sharing helps to get rid of the stigma that sometimes surrounds those of us who have conditions that are not obvious at first glance.
So what are you going to make visible today?
As I blog my way through the alphabet to raise awareness of CMT, today’s post was brought to you by the letter “V” – Visible. You can learn more about CMT and donate to support the search for a treatment for this (at present) incurable progressive degenerative nerve disease at www.cmtausa.org — Thank you!