Before I met my new husband Mike, I knew NOTHING about disability or chronic illness, and therefore had little compassion for those who suffer. It was simply not a part of my reality.
When I met Mike over eight years ago, he seemed pretty normal, so when he warned me right up front about his CFS (Chronic Fatigue Syndrome), I didn’t pay a whole lot of attention. He looked good to me!
And our similar temperaments, personalities and lifelong experiences in being ‘different’ meshed beautifully. We both felt so relieved to finally meet someone we could really relate to.
After just a few months, his CFS started to reappear. And for any of you who doubt the realities of those who suffer from CFS, please educate yourself over at the CDC page, and then read this piece which links to a GREAT New Yorker article by the author Laura Hillenbrand, who also suffers and struggles with CFS.
No, CFS is not about feeling tired sometimes. It is about relentless bouts of sudden, completely unpredictable pain, fatigue and illness, which saps all strength, clouds the mind, and seems to be barely treatable and certainly incurable by today’s physicians. It is about being crystal clear about the difference in the amount of energy it takes to sit up versus lie down. It is about not being able to stay upright for any length of time or move around your house for days or months on end. It is about having brain fog so bad you cannot function in any part of your life, and these symptoms come and go constantly for no apparent reason.
But almost worse than the symptoms is the way the rest of the world treats you, especially the medical establishment. Talk about a badly educated group of health professionals. Mike has been dealing with idiot doctors for two decades now, and unfortunately they don’t seem to be getting any smarter when it comes to CFS…
His favorite wrong diagnosis from MDs is: “You must be depressed.” Well, yes. You try going from a fully functional healthy 35-year-old to a fully non-functional CFS sufferer, and see how it makes YOU feel! But he has been treated for depression, so what else do you have to offer? Generally speaking the answer has been nothing.
They give you lots of tests, run up incredible bills, and then say they haven’t a clue what to do, all while Mike is running out of short-term disability, losing one more job and his health insurance.
Yes, suicide is not uncommon among CFS sufferers. What would you do if you had a chronic illness that no one understands, and most don’t even believe exists, with no reason to believe it will ever get better? I’m sure you get the picture now.
We have found some understanding and useful ideas from Dr. Sarah Myhill in England. She had been only treating those with CFS for years, partially because there is so much need in the UK.
Dr. Myhill has her own theories on the cause, “mitochondrial failure” and has helped to put together specific blood tests for the disease. She also offers her own free CFS book on the Internet. This book is VERY worth reading and includes many dietary recommendations and supplements that we have found helpful.
Those of you who suffer and your families now have my heartfelt love and support. Please contact me if you would like to share what you have learned about CFS, and I will do the same.
We are fighting a terrible illness and sometimes overwhelming ignorance together!