Dystonia MOVES Me: Reaching the Un-Diagnosed

September is Dystonia Awareness month and therefore I feel compelled to share my story about living with dystonia.

I was in college when a doctor scribbled ‘dystonia’ on a post-it note. Although they said it was just a fancy word for ‘jerking’, I held on to this scribbled note as if it was a winning lottery ticket. I tucked it away in my wallet and pulled it out anytime I met with a new doctor. Whenever I felt cheated by my body because it wouldn’t behave, as I desperately needed it to behave, I would pull out that scribbled note and cling it tightly to my chest. If someone said harmful words about my head bobbing or mockingly mimicked my neck contracting, I found comfort in the word on that was scribbled that note, and would whisper to myself, dystonia. I held on to hope, I held on tight to a crumpled post-it note, because that scribbled note helped me feel in control when physically everything felt out of control. At the time I had no clue that dystonia was actually Dystonia with a capital ‘D’, a body movement disorder. No, it wasn’t until my late 20s that I finally found out about Dystonia and was shortly after diagnosed with Dystonia.

My doctor confirmed my diagnosis of Dystonia in the same conversation that she confirmed I was pregnant with my daughter. For me, the two actually go together, dystonia and pregnancy, because my form of Dystonia is genetic. Shocking, yes, the news was alarming. The day it was confirmed that life was forming in me was the very day I began to more clearly understand how I was formed.

A diagnosis is affirming. It’s a revelation into how your body works, or doesn’t work (either way that you want to look at it). I am incredibly thankful to have a diagnosis. After receiving my diagnosis, it’s been a dance of embracing the diagnosis and yet not being defined solely by the diagnosis.  I am a member of a few online communities related to Dystonia. It’s unfortunate to hear that for most, including myself, the journey to a diagnosis is long and full of many detours, much time, resources, and energy spent chasing a diagnosis only to have it fall short and become a misdiagnosis, repeat, and repeat, and repeat. In fact on the road to my dystonia diagnosis I was surprisingly diagnosed with an autoimmune disease, prescribed many prescriptions that caused a slew of unfortunate side effects, one that temporarily altered my vision (yikes!), and had a few medical professionals proclaim, “its all in your head.”

Most people who talk with me about my dystonia genuinely care for me. They are kind people and they are ignorant people. I write ignorant in the simplest way, I know it is more often used in a condemning tone – that is not my intention. Maybe, uneducated would be a better word. Obviously Dystonia Awareness Month exists because the vast majority of humanity doesn’t know that dystonia exists, including and unfortunately many medical professionals. Therefore, I try to remember to not take personal offense when people acknowledge my dystonia, whether they are plain curious or unfortunately hurtful. Dystonia has taught me that humanity (all people no matter their religion -or no religion-, race, or status) can be extremely kind and considerate. And therefore, Dystonia has helped me to remember to also be kind and considerate, for that I count myself fortunate to be diagnosed with dystonia.

I can’t say that dystonia is difficult to overcome because unfortunately there is not a cure for dystonia – albeit there are great treatments, not many which are available to me due to how my form of dystonia manifests and my stage in life. However, I am extremely fortunate compared to other people with dystonia, which is why I hesitate to say that having dystonia can translate into something completely and wholly good. The saying goes, when life gives you lemons then make lemonade. Not everyone with dystonia has the opportunity to make lemonade. They are lacking treatment and vital support from their community. Even more, many do not even know that they have dystonia, they continue to walk in a dark fog. Treatment and inclusion could be an inch away from where they are standing but they don't even know to reach out and grab it.

I continue to struggle yet I do not need as intensive treatment as others, and I am fortunate to have many supportive people in my life. For me, making lemonade would mean living in a body that remains to struggle physically yet choosing to be brave and include myself in society. When I consider this challenge, I continue to return to an article titled, Dystonia Collateral Damage by Noel Valero. Among a few other things that drive me to openly write about dystonia (which is a mountain of challenge, one that I put off last year) and to insert myself into a society that knows almost nothing about dystonia, is the drive to fight against furthering this collateral damage. I long for others with dystonia to know that they are not alone and even more I hope that one day soon dystonia is easily recognized and accepted by all humanity.

“Many people with dystonia are caring, wonderful people but are virtual recluses because of dystonia and lack of awareness. They are out of sight and out of mind and their isolation makes us all collateral damage. We are deprived of their company, creativity, love, and friendship because they struggle alone with dystonia. We need to remember that they are our friends and family who should not face dystonia alone.” (I highly recommend the reading full article - click here.)

Today for the first time my daughter asked me a question that I always expected her to ask. Truly, I’ve been waiting for her to ask this question since before she was born. I’ve wondered at what age she would pick up on my dystonia. She will be four in 4 days and just today asked for the first time, “Mommy why is your head moving?” Kids are curious, in the cutest and silliest ways. Also, they are persistent. They want the long answer, they want the true answer, and they want the comforting answer to all of their questions. Adults are not that much different than children in that sense, especially when it comes to our physical health. Kids are just more courageous and verbally ask their questions. Today I was thankful that I was able to provide my daughter with an answer to her question that met all of the above criteria. The long-and-short answer is that I have a body movement disorder called dystonia. This diagnosis was confirmed after much testing and even more doctor appointments. As sure as I am that I have dystonia, I am sure of one thing, my form of dystonia is not life threatening, just life altering. And there you go, that is the answer I gave to my 3-almost-4-year-old daughter. As an addendum, I told her that there is only one other thing to which I am more confident, which is that God formed my body, He is my creator. Therefore, diagnosis or not, my identity is in Christ alone - BUT it sure is great to have a diagnosis, a gift which I thank God and my doctor for providing.

Picture of me holding the Dystonia Moves Me Challenge sign 

If you want to learn more about dystonia or are interested in furthering research for dystonia, go to the Dystonia Medical Research Foundation at https://www.dystonia-foundation.org. I found DMRF shortly after I was diagnosed with dystonia. Next month I will finally participate in my first dystonia awareness event with DMRF! Also, if you are a medical professional with offices near Des Moines, Iowa, I would be thrilled to provide you with dystonia awareness materials. You can email me at emilyafontenot[at]gmail.com