Papercut and colored pencil art by Sheryl Aronson X 5

Tuesday, May 18, 2010

Invisible Illness

In my last post I wrote about hunting for wildflowers. I mentioned a book I use that is specifically about wildflowers of Ohio, where I live. I like it because I don’t have to weed through (pun intended) lots of flowers that don’t grow in my area to find ones that do. I expect that pretty much every state or area has a similar book.

While I was out hunting wildflowers, I saw something I have never seen before. There was a butterfly crawling along on the ground. It was mostly on stone, and when it came to the occasional plant, it crawled up it, then jumped back down to the ground. It was a beautiful swallowtail butterfly, mostly yellow with black edging and stripes, and a row of iridescent blue spots along the sides. The wings looked intact, and as far as I could tell, there was nothing wrong with anything else about the butterfly. It just seemed to be unable to fly.

Just like the butterfly, when people look at me, they don’t see anything wrong with me. My disability is invisible.  In some ways that is good, because I don’t want to be treated any differently, as people tend to do sometimes. On the other hand, it makes it more difficult for others to understand when I am too fatigued to participate in an activity, or if my pain is such that I have to quit early.

Many chronic illnesses fall into this category of invisibility. Both Sjogren’s Syndrome and Fibromyalgia do, as well as Lupus and other autoimmune diseases. There is a wonderful website I have been following for a couple of years now titled But You Don’t Look Sick. It is written by a young woman with Lupus, with assistance from her friends and family. Christine Miserandero has won many awards for that site. A week in September has been designated 'National Invisible Chronic Illness Awareness Week'.  This website has alot of good info about living with invisible chronic illness.

So how do you respond when someone says “But you don’t look sick” or some other variant of  “You look so good, I don’t believe you are really sick”? How about “Thank you”?  It most often is meant as a complement.  If not, take it as one anyway.  You deserve it.

For a few years now, I have talked openly about my illness, trying to educate people. I don’t emphasize it, but if it fits the discussion, I jump in. I talk matter-of-factly, not looking for pity or for attention, and hopefully not getting the former, and getting just enough of the latter that they go home with better understanding of me and of my illnesses. I base the extent of my 'instruction' on the level of their interest.  Staying matter-of-fact in your tone will help others be at ease, and they will be more willing to listen. 

So what happened to that butterfly?  I carefully picked it up and put it on a plant in an area with more flowers.  An hour later, I could not find it.  My hope is that it recovered, and flew away.

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