Sometimes I feel like I'm standing on the outside of discovery...watching and waiting while new developments happen in CMTA research, amazed at how much further we still need to go to raise awareness of Charcot Marie Tooth Syndrome. This doesn't just mean raising awareness in the general public, so that understanding and acceptance may grow. That is only a small part...an even larger part is the difficult task of raising awareness of CMT within the medical community. This includes all facets of medicine--neurologists, orthopedists, general practitioners...the list goes on and on. As a patient, if you were to say to any one of these professionals "I have Multiple Sclerosis" you would most likely not hear responses such as "What?" or "I've never heard of that..." I know that it sounds implausible, but I am here to tell you; I've heard those statements when I report the fact that I have CMT...more than once. That is not to say that doctors wouldn't still need to do some research on a disease such as MS, in order to provide a patient with the best care possible. That is exactly what should happen...it's when such practices don't occur, that it becomes frustrating.
That is one way in which people with CMT still have a big fight on their hands...despite the fact that this disease was discovered in 1886 (125 years ago,) by three French doctors: Jean-Marie Charcot, Pierre Marie and Howard Henry Tooth, there is still so much misinformation and lack of knowledge within the medical community. 125 YEARS! It is just amazing to me that in all that time, we are still standing on the brink of knowledge...fighting against this misinformation, misdiagnoses and a lack of progress. I don't envy the CMTA its task of improving this situation, which is why I feel the need to help wherever I can. Recently an e-mail made its way through the CMT community, asking for people's stories about pain. You see, right now there is another form of misinformation to be squelched among medical professionals: the belief that CMT causes no pain. People with CMT are actually being told that the pain they are experiencing has nothing to do with their disease, that it must be caused by something else. So I pose a question to all my readers out there, because I need help in understanding this latest development...and my question is "WHY is this even an issue??" If you have a person with CMT, a diagnosis that most likely took years to be determined, why would you not listen to them? Why would you tell them their pain is due to something else, or worse...that it's 'all in their head?' If your patient has a disease of which you have limited knowledge, isn't it your duty as a medical professional to search for the answers, and admit when you don't have them? You may be familiar with the Hippocratic Oath which is an oath historically taken by doctors swearing to practice medicine ethically. I ask you...isn't the act of listening to your patients, and searching for answers (when you don't have them,) the very definition of ethical?
And so I share my story of pain...because it is something I have lived with for more years than I can count. It is real, it is annoying...it is sometimes so blinding, all I can see is white-hot nothingness until it passes. And it comes in many forms...some are more tolerable than others, and just cause me to grit my teeth and move on. Other kinds of pain I have experienced reduce me to tears that are uncontrollable, and embarrassing...and when they finally stop I grit my teeth--and once again move on. It may be hard to believe after reading this that I consider myself fortunate...because of the many things I have found over the years to help me, my pain has been greatly reduced; the braces, which improve my balance and posture, causing me to walk more efficiently and not run into as many walls, while helping me to stand up straighter (no longer hunching my back.) The pool therapy, which has strengthened my muscles so that they are less inclined to spasm and cramp...especially improving my core, so that my back is less likely to go out. Don't get me wrong...I still experience these moments, though the frequency has decreased dramatically. While there are other forms of discomfort I still live with daily, such as sharp nerve pain and muscle aches in my hands and arms, after I type too much...or struggle to open something...or lift too many pounds. I still struggle with back pain, though some days are much better than others. Probably the hardest and most frustrating thing I have to deal with is what I feel when I bang my hand, or arm, or hip into something such as a car door or a desk...those moments bring on the tears I can't control. When you've lost muscle because of atrophy, there is not much to protect you from the 'elements' so to speak...when you bang your hand into the end table reaching for the phone, or your toes on the edge of the bathtub stepping into the shower, that's when you are blinded. And there is not much to be done about that, as that protection against those bumps and bruises is gone.
It is my hope that this story about pain and the stories of many others with CMT will be shared with the professionals...that even now, doctors from all different fields of medicine are reading these stories and hearing about our experiences. To all of you within the medical community; I implore you! The time is now...your patients are coming to you with the trust and faith that they will be heard. If you don't have the answers, be honest with them...as a person with CMT, I am always more impressed with the professionals that admit there is still something to be learned. Hear what your patients are saying, and never dismiss...they deserve a voice, and will have one through you...if only you are willing to listen.