When I first became aware of Autoimmune Diseases and the fact that I had started collected them, I started like any newly diagnosed person does and I instantly reached to my computer and a date with Dr Google. I chose a random page entitled “Autoimmune FAQs” and began reading down a long list of over 80 + Autoimmune Diseases. “Oh my!” I thought, I hope that they aren’t listed from bad to worse! Since Rheumatoid Arthritis, Sjogrens, Multiple Sclerosis and Optic Neuritis etc where all appearing down the bottom of the list. However, for convenience sake, they decided to list them in alphabetical order.
After finally locating a few of the diseases I had been diagnosed with, I got down to some good investigative work. It was all looking extremely promising!
The page went on to reassure its reader that although you may have an ‘incurable disease’, life will be OK with some ‘minor adjustments’ and some ‘Disease Modifying Drugs’. They even few in a couple of happy pictures of people smiling and walking along hand in hand. Well that looked all very pleasant indeed! No problems here then… If only.
As in life, it always pays to read the fine print…
A brief glance into some actual support chat rooms filled with ACTUAL people who have these diseases and you are quickly acquainted to the realities of endless pain, difficulty moving, breathing and swallowing. Relationships troubles. Guilt and angst ridden sufferers. Careers ending. Money problems. Terrible and endless side effects and the list goes on. Clearly whomever is writing these lovely little FAQ sites have never actually MET anyone with an Autoimmune Disease!
It might be useful if the producers of these pages where to insert a little footnote stating “RESULTS MAY VARY!!!”
As I read down the list of 80 or more different diseases I started thinking to myself it looked more like a menu, and it began conjuring up visions of me sitting opposite my specialist with my menu in hand and asking “What is the special of the day?”. “Well, we recommend you start with a small portion of Sjogrens Syndrome and then a minor case of early diagnosed and treatable Autoimmune Arthritis. We suggest that it is diagnosed EARLY though because you might end up in severe pain and with joint replacements…” “What does that come with?” I would ask, to which she might reply “Well, I am afraid it DOES come with a lot of pain unfortunately and lots of pills, you might need a wheelchair for that one AND you may have to stay on Chemo for the rest of your life…. Would Madam like to try the Multiple Sclerosis? That comes with eye patches, loss of vision, some foot braces and catheters. I must say that one really is more like a buffet of issues and so you can have a real mixture with that one…”
I think you get the picture.
On one particularly bad ‘flare’ day when I could barely move, couldn’t eat, couldn’t see out my left eye, ached like a truck was slowly reversing over me and was throwing up constantly, I remember turning to my support sites for a little solace when up popped a post from someone who was talking about being in full remission and enjoying a second trip overseas. The tears were welling up in my eyes and my husband looked at me with a blank expression wondering what was wrong. Suddenly I was transported to the famous scene in When Harry Met Sally and I pointed to the post and through tears and gulps of agony I said “I’ll have what she’s having!”.