Invisible Illness Week

September  13-19 2010 has been designated 'National Invisible Chronic Illness Awareness Week'.  They have a simple and fun way of getting the word out about this awareness week, and make people feel good at the same time.  Here's the  idea:  Get some sticky notes, any color, any size.  Write on them encouraging words, and at the bottom write 'invisibleillness.com'.  Some suggestions they have of words to write are 'Got pain? Find hope!', 'If you are wondering if someone cares, someone does', and 'Pain is a bummer, but you don't have to do it alone'.  You can write out some notes at home and take them with you when you go out, or take your sticky notes and pen with you, and write them on the spot.  You can leave them anywhere were someone else will find them, inside a magazine at a doctor's office, on the mirror at a restaurant, etc.

They will be having a virtual conference, with a 90 minute workshop each day by various speakers.  You register for the conference, then just go to the website at the designated time and listen in.  You can also listen to the workshops any time after they take place on itunes.  I also like the theme for this year's campaign: 'Each 1 can reach 1'.

According to the statistics on the invisible illness web page, one out of two Americans is living with some kind of condition.  This includes cancer, arthritis, diabetes, chronic pain and mental illness, among many others.  96% of these people have an invisible condition, one that does not require a cane or other visible sign. When you look at me, you don't see my Sjogren's Syndrome or Fibromyalgia.  You see a middle aged woman who looks healthy.  For the most part, I like it that way

I think that spreading the word about invisible illness will help everyone.  It will remind us not to make assumptions about others, and to be gentler with each other.  Go to the invisible illness week website, explore what they have, and go out and spread those sticky notes of encouragement.  I love random acts of kindness.

 

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.