Yesterday as I was trying to rest on the couch, feeling miserable from my bad sinus infection and CFS flare, I was having a mini-pity party for myself when I saw something amazing on a television show that I feel I was meant to be tuned into at that particular time. I was watching The Doctors and I viewed the story of a very courageous woman who suffers from the illness, Dystonia. Dystonia is a neurological movement disorder that made a vibrant, healthy, beautiful dancer into someone who has great difficulty moving and her limbs constantly shake and tighten up. When I saw Alex, I first thought she had Parkinson’s Disease because the shaking was so severe.
What stood out to me most of all was how Montel Williams, who was helping Alex find help in dealing with her illness, said that her illness is so visible to everyone. Alex went out in public with Montel for the first time in a very long time because she is very self-conscious and people make fun of her uncontrollable movements. According to The Doctors bio on Alex:
Diagnosed in 2007, Alex is persistently reminded of her disorder because her muscles constantly involuntarily contract, forcing her body into repetitive and often twisting movements.
Alex recalls what it is like living with dystonia: “I just don’t want people staring at me like I’m a monster; I’m not. You’re looking at me in a dirty way, and it hurts. I just would rather have people have the guts to just come up and, you know, [ask] ‘What’s wrong? Are you having a bad day? Do you need some help?’ I would rather them do that than just stare at me.”
Watching Alex made me stop and think about how much those of us with ME/CFS vocalize the fact that our illness is not visible, therefore, people don’t understand. After watching the trials that Alex goes through, and the ridicule from other people she receives, I’m glad when I walk down the street people aren’t staring at me because I am different. I am glad that I have a disorder that is not visible to the world.
When Montel took Alex out for lunch, he had to leave the table for a few minutes. A woman came up and took Montel’s chair and Alex told her that seat was taken – her friend was sitting there. The lady actually looked at Alex and told her, “I don’t believe you. You couldn’t possibly have any friends”. What an awful thing to say to someone who has no control over her body and what the disease is doing to her!
I know we as CFS patients have often said if people could just see what we feel like on the outside, they would understand. But I don’t think they would. It would just give people more ammunition to be cruel. I found a blessing in ME/CFS today and I pray that Alex is able to get help and find her blessings. I know she found a blessing in Montel Williams and The Doctors show.
Thanks for posting this topic, Sandy. It made me switch over to being grateful about “invisible diseases”. On a side note, I cannot believe the atrosities that ignorant people let spew from their mouths, and then there’s that non-verbal communication, which also cuts like a knife.
The saying “Sticks and stones may break my bones, but words will never hurt me” is absurd.
Sandy Robinson says
So true, Nancy. Words are so strong and so powerful. It’s easy to say you shouldn’t let words get to you, but it’s not easy to actually accomplish. Take care!
I have dystonia, have had it for 20 years. Thanks to everyone for understanding that yes, it is horrible when people spot dystonia. Most people don’t say anything, they just stare. And at the same time, I can’t see straight because my head’s jerking. And the pain is atrocious. Again thank you all so much for understanding. Dystonia has been in the closet for years – now it’s finally coming out.
I never thought about it that way, thank you for pointing it out!! I have a young friend with severe Tourette’s who faces bullying, stares and ridicule for his disorder. He inspires me because he’s only 9 and started an anti-bullying campaign (jaylenschallenge.org)
I often say it’s a good thing I don’t look as bad as I feel…and I do sometimes get ridiculed for how I feel (by family ::sigh::) but not like that woman.
Thanks again, beautiful article.
I don’t believe that is so. I wish people, doctors, family members, friends and co-workers could see that we have a real illness and believe us, and be more willing to understand and to help. Most people are not like that lady sitting in the chair; most people are compassionate and understanding towards illnesses and cancer. I understand your point, but I would rather have my illness be known and for people to see that it is real.