There’s a huge group of people that suffer from a “hidden disability” They often lack recognition and support, but that doesn’t mean their life is any easier than those with more obvious difficulties. More common hidden disabilities include diabetes, and chronic fatigue syndrome.
Dystonia, which comes in several forms from mild to chronic, one of the most insidious and lesser known of the movement control diseases, can also be classed as a “hidden” disability. I have suffered from laryngeal dystonia for more than 50 years. It first appeared when I was in high school, under stress from final exams. I knew not what it was then, but now know that it is a hereditary disease, of neurological origin, which manifests itself in involuntary, uncontrolled muscle spasms, in my case of the voice box, which causes a shaky or strangled voice and sometimes unclear speech.
A more common form is cervical dystonia or spasmodic torticollis, affecting muscles in the neck and shoulders which cause painful muscle spasms and the neck to tauten, pull or turn. It can also affect hands, legs, facial muscles and in very severe cases the whole body. Only identified about 30 years ago, more than 300,000 people in North America have now been diagnosed with this disorder. It is believed the late Kate Hepburn suffered from vocal dystonia and over the years, other well known people have been diagnosed with some form of it, and some have lent their name to the cause. There is currently no known cure for dystonia, although most forms benefit from drug therapy, including botulinum toxin injections. But unlike Parkinson's disease, it is usually not progressive or life threatening, just with you for life. In recent years the Dystonia Medical Research Foundation, has made a few strides in understanding this disorder, and a rogue gene hailed as a breakthrough was discovered in the late 1990’s. Sadly a cure has yet to be found.
In my case, I diagnosed myself and have learned to accept the consequences. Periodically over many years, I consulted voice pathologists and took and discarded tranquilizers, before concluding that I must have some neurological imbalance, beyond my control, which I just had to learn to live with. It was only in the early 1990’s while on a visit to England, that I talked with someone recently diagnosed with torticollis who gave me some literature on the disease. As I read it, slowly everything fell into place; I had dystonia.
Lack of diagnosis is not unusual. This particular medical ailment was only recognized as a disorder in the early 1980’s. Prior to that it was thought to be of neuro/psychiatric origin. Difficult to diagnose, many doctors are still not familiar with it, and only a few specialist centers exist. Upon my return, I consulted a specialist, and received confirmation of my condition. I received no support or treatment of any kind, as it was not considered serious enough to benefit from injections. I was reluctant to consider this treatment anyway but it was a huge relief to get professional confirmation that I had a valid disorder, and it was not all in my head. After 40 years of the unknown, I came to terms with my affliction and learned to manage it in my daily life, instead of trying to deny its existence.
While research must continue, I want to see more resources directed to creating awareness of the disorder. If there had been more awareness generated in the past, my life and that of many others would have been much easier. During my working career, when seeking employment, I did not get jobs I deserved, lost jobs I deserved, and resigned from jobs which aggravated my dystonia. Perhaps I myself am guilty of not creating awareness, for always wanting to obtain work on my ability rather than my disability, I never disclosed it at Interview, although Interviews always caused stress and proved difficult. Perhaps I should have sought employment under a disability quota, once hired I would have performed my duties as an exemplary employee. Likewise in my personal life, relationships suffered because of my reticence in explaining the problem and I resented attention being drawn to it by casual acquaintances and dismissed the subject quickly. As I get older people often think that I am a stroke survivor, the symptoms being similar. But my vocal difficulties have never been a problem with close friends and family with whom I am relaxed and familiar; rarely does the condition show itself. That’s dystonia, unpredictable, uncontrollable, and mostly unknown; stress related, it responds to awareness.
Eventually, my doctor considered I was eligible for disability and an application was submitted. This process is long and tedious, and was turned down both initially and on appeal, largely because the adjudication panel had no knowledge of the condition, its severity and related difficulties, and I was made to feel a fraud, a very humiliating, demeaning experience and a glaring example of lack of awareness. And so I carried on, ending my working life as a self employed writer/editor which allowed me to manage my routine according to my particular condition that day, until I reached retirement.
Dystonia has impacted my life both professionally, personally and financially, more than I could ever have imagined when, as a 16 year old student, my voice choked up during my first presentation, to the dismay of classmates, all those years ago.
Half a century is a long time for such problems to remain “hidden”. In the 21st century let us focus more effort to create a window on dystonia and its associated difficulties.
Tess Bridgwater is freelance Writer/ Editor from Cambridge, Ontario who has contributed many travel and lifestyle features to Canadian, U.S. and International Magazines and Newspapers, both before and after she was diagnosed with dystonia. She is also the author of a Wartime Memoir “Finding my Footprints in Sarum” about growing up in England during WWII, which is available at www.Amazon.com.