Pam Kidd developed chronic fatigue syndrome (ME/CFS) in 1986, but had to wait 20 years for a diagnosis; then her kids got sick. Hoping to raise awareness, she has written a book (I Have CFS But I Don’t Look Sick) describing her family’s struggles with CFS & fibromyalgia - all made worse by physician disbelief and lack of training.
Following is a personal story she kindly wrote to share with ProHealth readers:
I am in my 24th year now with 'chronic fatigue syndrome' (CFS or ME/CFS). I never thought my life would ever be as drastically changed by a disabling and debilitating incurable disease as it is now.
In 1986 I got mononucleosis. The following year I was struck with CFS. I went undiagnosed until 20 years later. All those years in between were spent searching for a doctor/specialist who would be able to give me the answer as to what happened to me.
I was a very healthy woman, strong and full of life, and a very hard worker before I married. I had already accomplished having a financial dowry before I married.
Not long after I married, I was struck with CFS. This left my new husband having to come to accept that the healthy women he married was now gone. This was very difficult for him to do, especially after we saw so many doctors who all found the same results - "normal."
This caused him to side with them over me.
Surely doctors cannot be wrong. Yes they were. I was not depressed, hormonal or crazy. I knew I was sick. The body I once had was no more. No energy, no life, no nothing.
I was experiencing debilitating fatigue like I’d never had before in my life. It felt like I had come under some kind of heavy sedation. I could not come out of it, as hard as I tried. It was unrelenting. It would not lift. It remained. No amount of rest relieved it. I could not work anymore.
Finally, after we found a CFS specialist and traveled a great distance to see him, my husband realized that I was truly sick all those years before.
This doctor told my husband everything I had become without ever knowing me. My husband was in awe of this, and that is when he became my greatest supporter. I think he was living in denial that he could have a young vibrant wife who became ill with an incurable, disabling, debilitating disease.
I never thought that my children would ever be struck by CFS as I was. Surely I was the only one who would be.
Many years later, when both of my children were in their teens, they both became ill with a virus. My daughter got mononucleosis and my son got labyrinthitis. Neither of my kids was the same after that.
After my son was struck by this virus - which greatly mimicked mononucleosis but was not - a disabling and debilitating fatigue took him out of high school in his Junior year. I had a tutor come to help him get through this difficult time so he could graduate. He did graduate and that was a victory in itself.
My daughter was experiencing fatigue as well, and was reducing her activities and work hours. I kept watch over what was going on but kept it to myself, thinking, noooo, this will pass.
The day came when my son approached me and said, “Mom, I think I have what you have.”
That was when I decided to take him to see the same CFS specialist who diagnosed me.
Because it was so very far away, I decided to ask my daughter if she wanted to come as well, since I knew what was happening to her. At first she wanted no part of it; but then after it hit her and she realized how her lifestyle had to be changed, she said yes. She was in denial before that.
The specialist diagnosed them both with CFS. We learned how to treat the many, many symptoms that come along with it.
Not too long after my daughter was diagnosed with CFS, she started developing pain issues.
This became extremely severe. No over-the-counter pain med brought her any relief. This was then diagnosed as Fibromyalgia by our family doctor. She has both CFS and Fibromyalgia. It was almost more then she could bear. We also had to travel to a pain management center to get her the only pain medicine that brought her relief. She was seeing a chiropractor before that to help relieve her pain to some degree as well.
I am now on a mission to bring a higher awareness – a worldwide awareness about CFS - to this generation.
So I’ve written a book - I have CFS But I Don't Look Sick - that has just been released. I will not downplay the severity of this illness/disease. New understanding needs to be brought to the attention of others about how severe CFS really is! I am trying my very best to help make a huge impact on our society. I will not rest until I do.
- Sincerely, ME/CFS Patient Pam Kidd, March 2011