Monday, September 14, 2009

An Arist with an Invisible Illness

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!



Melissa, Multi-Tasking Mama said...

You are so right, the only way to combat stigma is education. Thanks for this great post!

fibrohaven said...

Kellie this is such a beautiful post. You write so well! I have already shared this on FibroHaven's facebook page. I hope that is okay.

First can I say, if you did have "lazy" tattooed on your forehead it would be done beautifully, just like all your other creations. :)

You are an artist. Fibromyalgia may affect that, but it can never change that. I know how hard it is to find balance in a chronic life, and I believe you will find it. Honor your passions and forget the guilt.

Thanks for sharing this Kellie. Great post!

Trisha Pearson said...

Great post, Kellie! I'm a writer with fibromyalgia so I can really relate to what you said here. Good luck with your online store!

Rae said...

I appreciate your visit to my blog and for leaving a comment about RLS. I don't think anyone can understand the impact it has on our lives unless they have suffered with it. It is too hard to describe and few can relate.

I have looked back over some of your blog. The bead work is beautiful and your talent is exceptional. I have added myself to follow your blog. I am looking forward to seeing more.

Dee said...

Excellent, thought provoking post. I thank you.

Melobeau said...

Kellie, Thanks so much for your courageous and informative post on invisible illness. You have helped put a face on the challenges of surviving an invisible illnesses like fibromyalgia that society generally doesn't understand. As a musician/artist with an invisible illness I understand a bit. It's so easy to feel lonely and isolated.

BTW, your work is lovely and I especially appreciate "Burnt Offering" and your filigree work.

The people who usually get recognition and medals (rock star, athletes, movie stars, etc.) are not always the ones who deserve them the most so I'm sending you an IMAGINARY cyber gold medal for being "survivor 1st class"! (It's a very special and pretty one! )

Paleo Autoimmune Recipes said...

Kellie you really really need to come visit me. You have autoimmune conditions like me. Based on Dr. Cordain's research at the University of Colorado I have followed his suggestions since Oct and my IBS is gone. Pain is RECEDING. No joke.

Seriously come see me..

ChasinRainbows2 said...

This IS a wonderful post, very well written. I'm going back through your posts, new friend. Smiles.