Tag Tuesday - A Bird; And a Story: THE INVISIBLE ILLNESS

Today's tag features a bird as the focal point. 

(click for detail)

For how I made it or to join in on this challenge, go to my Blog Challenge Garden.

The Invisible Illness

21st in the Tuesday Story Series

Today, I'm not really telling a story or relating a past experience. Rather, I'm speaking of a present ongoing experience, because it's part of my life. I have an invisible illness. There is no cast on a broken appendage, no tell tale sign on my skin, nothing that requires life saving treatments such as chemotherapy. And as with most invisible illnesses, society as a whole doesn't understand it because it does not fit into a neat and tidy box of medical descriptions. I have Myalgic Encephalomyelitis, commonly called Chronic Fatigue Syndrome, an auto immune disease.

Twenty years ago, fibromyalgia was considered a women's problem, and a mental issue. Now, you see ads for medication on television and in magazines promising to help those who suffer from fibromyalgia. As my doctor mentioned to me recently, probably in twenty years, ME/CFS will be considered mainstream as well, and then all of those who struggle with it will be "legitimately" ill. But for now, most of us bear the doubts of those around us.

I used to own my own antiques business and traveled by myself. I, along with my husband, homeschooled our daughter, who is now 27. I sang in the church choir, planted gardens, researched genealogy, traveled with my husband, oversaw a 600 member organization and worked part time in a friend's antique mall. My husband and I raised a mentally impaired and emotionally disabled adopted child, dealt with an incompetent Mental Health system, and fought with doctors about treatment for this child, which required us to be up to date with the latest medical research. We still deal with current issues involving him.

Three years ago, my life radically changed. The first year I could hardly move from the bed. I was exhausted, with a heavy liquid exhaustion like I have never felt before. My mind became muddled, my stamina was completely gone and I felt that I barely existed. Doctors had no answer. Basically, ME/CFS is defined by what it isn't - in other words after testing for, and ruling out, everything else, ME/CFS was what was left. Over the past three years, I have had to accept where I am, and realize that in all probability my life will never be the same. Though I have improved somewhat (I actually planted several flowers in a flower bed last week), it is highly likely that I will always struggle with relapses and will have days in which I can only lie on the bed. I still have trouble remembering words and thinking clearly, and find that I become overwhelmed very quickly with crowds, large stores and loud sounds. When I overdo, I pay by being unable to move, or with pain. I can not drive any further than the small village we live near without becoming too exhausted to drive back home, so I have to be driven to any appointments by my husband or daughter.

The cost though, is higher than loss of a certain quality of life, this illness also costs in the changes in peoples perception of you. There is a book by Joy Selak entitled You Don't Look Sick! where she describes what has been like for her to live with an invisible illness. The title comes from a comment made to her when she was explaining that she was ill to someone new. I have heard that so many times! And to this day, I am not sure how to answer it - You Don't Look Sick!  - "thank you" ? (for what, don't you believe me?) or "But I am sick really"? (that really sounds convincing!) or "Gee, I'm sorry...." (I really wish I did look sick, you know..). Friends who don't really know what to say, or get tired of waiting for you to feel better just fade away, even people whom I have known for 25 years or more.  Most of my family do not think I am ill, and that, as one put it, "it's all in my head." I have dealt with grief, sadness and anger through this illness, and at times been very lonely.

However, I am not alone. My faith has deepened and sustains me, my husband John, daughter Tabitha, and sister Judy have become like precious gold to me. The small handful of friends that I do have bring laughter and encouragement into my life. I have discovered that I have artistic talent, which may have never happened if my life had stayed the same. I have seen that it doesn't pay to fret over things and I don't need to try to control my surroundings. Recently I was on our front porch, pruning some flowers in hanging pots, and I suddenly realized a sweet breeze was blowing, I could hear Bob White quail calling, and birds scolding around the bird feeders. The horses in the pasture across the road were enjoying the sun. There were no other sounds and for that instance, I felt such peace. 

I encourage you if you know someone who struggles with ME/CFS, Crohn's, Lupus, Fibromyalgia, Guillian Barre Syndrome, any kind of illness or injury which is chronic and limiting, be their friend. Believe them, and encourage them. Don't ignore them, or forget them. Send a card occasionally, or call. Love on them. Read The Spoon Theory and you will get a much better idea of what life is like with an invisible illness. 

Rebecca