Megan Again : Dystonia Moves Me
By Megan Wirts
This week marks the 35th year that I have been alive. No, I don’t feel the need to hide my age or lie about it like some people do, because I am thrilled to be 35 years old.
You see, there was a brief time in my life where I was convinced that I wouldn’t live to be this age and now every year that I am alive I plan on celebrating as much as I can. Growing older has shown me the fragility and...
...beauty of this amazing life that I have been gifted.
Besides being my birthday month, September is also Dystonia Awareness Month.
If you have been following my column or you know me, you know that I have a neurological movement disorder called Dystonia. It causes me to have extreme pain, uncontrollable muscle spasms, abnormal posture, twisting and tremors, to name a few symptoms. It has no known cure and affects hundreds of thousands of people in North America. Dystonia is the 3rd most common movement disorder and yet not many people are aware of this disorder. I know I wasn’t until I was diagnosed with it in 2015.
My story is not a story about someone that has overcome their illness. It is not a story about how I found a super star doctor that saved my life and cured me. My story is about how I am currently surviving and living with this. Dystonia has changed my life in immeasurable ways. I have Dystonia every second of my life and it isn’t going away.
Prior to my diagnosis I saw countless physicians. Some of whom told me that my symptoms were just a result of me being anxious or they were “in my head”. I kept telling them that yes, I was anxious! I was anxious because my body was doing things that I had no control over. I was anxious because I was in pain and I didn’t know why. I was anxious because I thought was dying. I was told to just be positive, to pray more, lose weight, to see a psychologist and take some anti-depressants. I was frustrated, angry, scared and felt as if I was losing control of everything in my life. It was a dark, stressful and difficult time in my life, that I still haven’t completely gotten over.
Recently, I was watching an episode of The Golden Girls in which Dorothy is diagnosed with Chronic Fatigue Syndrome. While was watching my eyes filled with tears and I had to pause the show because I began sobbing uncontrollably. My husband looked over at me like I had finally lost my mind completely, and said, “What the heck Meg? She’s going to be fine.”
But I wasn’t upset because of Dorothy’s diagnosis, I was so overcome with emotion because of how she finally got to her diagnosis. It was like I was watching my own story unfold in front of me on a show that aired in 1989.
In it, she sees multiple doctors in search of a diagnosis and nobody can give her an answer. One neurologist in particular tells her she is just getting old and she should see a psychiatrist. He made her feel small and like she was making all of it up. When she is finally diagnosed by a kind and compassionate doctor, she is relieved that she isn't somehow causing this herself and that it isn't all in her head. She and the other Golden Girls, go out to celebrate and she sees the neurologist that was rude and dismissive to her and she lets him have it! Here is a quote from her monologue:
"I don't know where you doctors lose your humanity, but you lose it. You know, if all of you at the beginning of your careers could get very sick and very scared for a while, you'd probably learn more from that than from anything else. You better start listening to your patients. They need to be heard. They need caring. They need compassion. They need attending to. You know, someday Dr. Budd, you're going to be on the other side of the table, and as angry as I am and as ANGRY as I always will be, I still wish you a better doctor than you were to me."
This was from 1989. 1989!!! Still in 2016 there are people, women in particular, that are treated like this. I experienced the exact same things as Dorothy did just last year. How is this STILL acceptable 27 years later?! HOW?! If I ever run into any of those doctors that made me feel small and like I was being overly dramatic, instead of trying to help me when I was really very sick, I hope that I am as brave as Dorothy.
This is why we need Dystonia Awareness. This is why I share my story. So that people in the medical community are not dismissive and listen to their patients with more care and more compassion, and so that a cure can be found.
I did eventually find a physician that is treating me like a human and has my best interests at heart. I do finally feel listened to and heard. That is so important in a doctor/patient relationship. That is not to say that I do not still have some lingering trust issues from my past experiences, hopefully with time though, I can move on from those feelings.
My story is not unlike many of us that are living with Dystonia. Awareness begins with me and it begins with you. Please help me and the many others living with Dystonia, use the hashtag #DystoniaMovesMe when sharing my story. Dystonia not only moves me; it moves all of us.
Go to www.dystonia-foundation.org to find out more about Dystonia and how you can help find a cure.
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