Tuesday, June 14, 2011

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 Syndromeany 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. 



  1. How beautifully you have explained it!

    I have always believed in you, and knew that it was a struggle for you to have others believe in what you are going through as a real tangible thing. Until I had my accident last year I knew that while I believed in your illness and it's drastic change it had made in your life, I did not completely grasp the full depth of the weight of your struggle. Now I do, and it truly is at times a very lonesome road. It hurts when friends disappear because they do not know or want to know how to still be a friend for someone who is now ill or injured with no outward signs.

    You have truly been my rock, my shoulder to cry on, my faithful sister who senses when I need you to call. You make me laugh, you understand the tears and frustration. You share your art with me and it lifts me up. You rejoice with me when I see the Lord's hand in my situation. You are my mentor. You are truly my blessing and I try to give back to you what you freely give to me. I love you with all my heart and I am fortunate to have you as my sister!

    If people would just love each other the way our Lord loves us then we would be surrounded with friends and family. It is sad that that concept is foreign to so many who say they are friends until the road turns rough and they don't "get it". It has made me more aware of how I treat people now too.

    I pray daily for the Lord to shower you with blessings!
    Love you bunches!

  2. 1st of all, Judy is a remarkable person!
    i wish friends, coworkers, family would feel that way!!! your story could be my story Rebecca...just change the name of the illness to Guillian Barre Syndrome! yes, after 3 1/2 years of onset, i look normal ~ except for the tell-tale sign of the trach scar. i work a 40 hour week because i am the INSURED in our family...those 40 hours take their toll. so when i tell a coworker or a friend that i can't go to a gathering after work because i'm exhausted...they just look at me...YES your story is my story...i've laid in that bed, i know people who just don't 'get it'. i have my rock...my husband does so much for me to lift my daily quality of life...my biggest fear is that he will take ill. GOD has been my rock ~ when you're down there's nothing more uplifting than prayer...sisters are blessings...daughter & grands are joys...
    my dog is my comfort zone...my art is my release. i will read the suggestions that you've posted. please know that you are in my daily thoughts & prayers.

  3. Love 2 you - prayers 4 you, always. XOX Andrea

  4. Victoria, thank you for the kind words. I have added you to my prayer list. How incredibly hard it must be to have to do a 40 hour work week! My prayers are with you and your family. God is indeed the rock we cling to, that holds us up, that comforts our frailties. Blessings!

  5. I'm reading through your blog for the first time today, and just wanted to let you know how completely I understand. I was diagnosed with CFS and Fibromyalgia about 12 years ago. For about 10 years, I was able to keep up with the normal pace of life for the most part, but a year and a half ago, I got a horrible case of shingles, which through my body into a horrible Fibro Flare. It has turned my life and my husband and kids lives upside down. Suddenly, I was unable to get out of bed to even get a drink. No more asking mom to drive somewhere or to cook something. I've probably cooked a meal only a handful of times since this started. Luckily, I'm married to the most amazing man. Without complaint, has taken over cooking, laundry and cleaning in addition to working full time and taking care of our house and yard. He drives the kids where they need to go and does most of the grocery shopping. I can't imagine what would have happened if it wasn't for him. I'm lucky, and I often think about single mothers, who have to go through this with nobody there to lean on.
    Like you, the illness made me realize my creative side. I have always enjoyed decorating, but I never really realized that I could do anything artistic. Now, it's my life line. It's a way for me to feel that I've actually accomplished something, when I'm not able to do anything else. It has made me start to feel like I'm coming back to life after spending so much time laying in bed.
    Thanks for your post. You're definitely not alone!


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