Friday, January 17, 2014

They See What They Want To See

I recently "celebrated" the anniversary of being diagnosed with Multiple Sclerosis. I use celebrate loosely of course. I actually thought it was 8 years of being diagnosed. However I went to a doctor's appointment yesterday and found out it was 10 years. Ten years since someone told me that they thought I had Multiple Sclerosis. Wow! I believe I suffered for many years before that. Then there are other days that I remember. The day I was told that I had Scleroderma. That was a hard one. I think I was dealing with MS and Rheumatoid Arthritis pretty well. The Scleroderma was just so complicated and seemed so dangerous. The one thing that I do clearly remember about everyday that I received a diagnosis of anything is going home and looking in the mirror.

As I think back I was actually trying to see if you could see the illness by looking at me. And guess what? You couldn't. That was great since I was still in the working world and attending classes. I wanted to keep that" normal" look. However, as time progressed and I started to feel worse and my body started to be affected internally, I wished I did change on the outside at least a little bit. I had some  rashes on my arms and periodically on my face but other than that, I looked okay to other people. Every once in awhile someone would ask me if I was tired or in pain. I think those questions had more to do with my facial expression than with my illness.

I remember before being diagnosed. I had a really intense tremor in my hands. I was told by two neuros that I had parkinsonism. That tremor attracted more attention than anything else for quite sometime. It was very obvious and people would stare. I was pretty young so I know they were curious as to why on earth my hands shook like that. Hmmmmm, looking back, I hated that attention. Then when I started a medication that controlled the tremor, there were no signs I was ill. Now, do not get me wrong, I do not miss that tremor! It actually comes back if I am stressed or in a flare. I am always glad when it leaves again. It just seemed like people cared more when they could see something was wrong. It is as if people have to see or be able to touch a symptom in order to believe you are sick. Yet, to much outside evidence overwhelms them or makes them uncomfortable. I am not talking about everyone. But I am talking about the ones that will not hold the door opened for a man with blisters on his hands and face but will whisper about him as they try to decide what disease he has.
I think I can speak for a majority of my friends when I say, we do not want your sympathy. We really do not. However, we do want to be respected. What does that mean? Well, it means you are not whispering and snickering at our face or our walk or our tremor. It means that we do not want to be chased down when we park in disabled parking, by a mad man yelling to see our proof of disability card (not a real thing). It means that you do not call us lazy because we can not do the things we use to do. It means that our faces can look beautiful but that does not give you the right to question our illness, ever.

I asked my 5 year old what a curve in the tree in our front yard looked like to him. He said, "It looks like a giraffe Mama." I said. "Really?" "I think it looks like a horse or a donkey." He laughed and replied, "You see that with your eyes mama, I see a giraffe with mine." He had just spoken a mouthful to me! I realized that my illnesses were visible to anyone that wanted to see them, I did not need a card, or a t-shirt, or a huge therapy dog. I didn't need anything to prove I was sick. The truth is I do not have to prove it. I just have to worry about feeling better and doing better and maintaining my quality of life. I will let THEM deal with whether they see me as disabled or not. I actually took a breath. I could stop concerning myself with whether people saw me as a giraffe or a horse. They were going to see me their way, period.

I look in the same mirror everyday. I see a woman fighting to live the best life that she can , against so many odds. I am still partially blind in my right eye. SO I do see some shrinkage in it. I just finished my steroid and chemo treatments. I see the hair loss and swelling. I see many different things that hint to me being ill. But I do not care if anyone else does.

I encourage my fellow warriors in any disease battle to concentrate on your health. You know your diagnosis, you know your limitations, you know what you feel like from day to day, Some of us had to fight for years to convince the medical world that we were even sick. Do not waste another moment on convincing. We are warriors, we are in the fight of our lives and we do not owe anyone an explanation or proof of why we are here. Even if you could carry your medical history and records everywhere you go, they are going to see what they want to see.



  1. That was so awesome as is everything you write about. Love ya! ;)