National Invisible Chronic Illness Awareness Week, September 14-20, 2009
What is an invisible illness? It's a term used to refer to a medical condition that isn't visible to others. It encompasses a range of conditions like rheumatoid arthritis, diabetes, asthma, fibromyalgia and many other conditions. According to the 2002 Census, approximately 96% of people who live with an illness have an illness that is invisible. These people do not use a cane or any assistive device and may look perfectly healthy. Why is this important? Society expects the ill to look ill. People have preconceived notions on what a really sick person should look like, and so, people like myself, who have a chronic illness, are judged because we don't look sick.
My illness is fibromyalgia. I was diagnosed about 6 years ago. There is not any part of my life that has not been changed by this. I don’t look sick, but even on my good days now, there is always pain and exhaustion. I work in a bead store, and while my co-workers know about my illness, most of our customers do not. I teach at the bead store, and most of the students don’t know that I have fibromyalgia. I love trying to explain to someone that I can only teach once a month because it takes me a month to recover. They look at me like I have “lazy” tattooed on my forehead.
For people with an invisible illness, there is often a feeling of judgment, or lack of understanding. I myself have been guilty of this in the past. You see someone pull up and park in a handicap parking spot, and they walk away from the car. They look fine and you instantly assume that they are cheating the system, probably using someone else’s placard. Now I understand you don’t have to look sick to be sick.
My fibromyalgia causes me to have symptoms that range from extreme and almost constant pain, migraines, severe restless leg syndrome, digestive issues, blurry vision, chemical sensitivities, and constant fatigue. People with fibromyaglia have sleep issues, we don’t get into that deep REM sleep, which is the restive and restorative sleep. We start to have cognitive issues when this is going on, trouble thinking, remembering, and talking. I always mix up words. I will call a couch a “curtain”. I can usually tell by the look on someone’s face that I have messed up my words again, they always look so confused. All these symptoms and yet I don’t look sick.
How does having fibromyalgia affect me as an artist? For one thing, it’s become pretty clear that there are some things that have become very hard for me to do. I rarely work with my clay for pleasure any more; it’s hard on me. The same goes for crocheting. I love both of these crafts, but I am slowly letting them go. I love doing the wire wrapping but can’t do it all the time either, it’s almost as bad as the crocheting.
How does having an invisible illness affect me as an artist? People have this expectation of you, if you are an artist, that you should be out there selling your work. I did try to do craft shows for a couple of years after my diagnosis, but I was killing myself trying to do all that physical work. I decided to quit selling a few years ago and try to concentrate on my job. This isn’t working either. I give my job every ounce of energy I have, and then I come home and rest up for the next day of work. I have no quality of life anymore. Getting a new job is going to be difficult with my health issues, so the solution is that I need to sell my work. I can’t tell you how many times I have heard “you should go do this, you should go do that” and when I say that I am not physically capable of it, people always look stunned, because I don’t look sick. If I ever do shows again, it will only be with someone else doing the set up for me. The ideal situation is online selling, no show set up required! For now, I am trying to set up my little etsy shop and hopefully I can quit my job in a few years and work from home.
Why am I blogging for National Invisible Chronic Illness Awareness Week? Because I believe in the power of those of us that are ill. If we stand up and explain, help educate, eventually we can overcome the stigma attached with invisible illness. I don't often update my blog, but this is very important to me. Thank you for taking the time to read my blog!