I don’t know about you, but many doctors have told me that besides my having myalgic encephalomyelitis (ME), I’m in good health. My primary care doctor prescribes drugs for general pain, muscle spasms, severe headaches, allergic eyes, dry eyes, breathing difficulties, dry mucus membranes, and add to that anti-inflammatory meds and the list goes on. Not bad for a healthy person!
I was sent for a consult with a young internist last year. He was supposed to know about ME, but kept referring to it as FM. Even after I explained that I’ve had violent reactions to the many antidepressants I’ve tried, he gave me a prescription for Cymbalta. “Just in case you change your mind”, he said. Really? Needless to say I was underwhelmed by his knowledge of ME. He wrote to my doctor saying that cognitive behavioural therapy might help me, but I wouldn’t benefit from physical therapy for my shoulder pain (which includes the progressive inability to use my left arm). All of the specialists I’ve seen in the past 16 years concluded that I’m just fine.
Neurologists say they can see no reason for the pins and needles in my hands and mouth—I’m fine. Cardiologists kept me in hospital for a week in 2012 for my heart, which was beating erratically, and said I was fine. Follow-up cardiologist said that it must be the ME because the abnormal EKG is my normal. No need to see her anymore. I’m fine. My kidneys are covered with large cysts, but no problem! I had two laser treatments for glaucoma in 2010 but it took years to get an appointment for a follow-up. I just saw a new ophthalmologist who examined me for a whole four minutes and said everything was fine. No need to come back. What? As she got up and put her hand on the door handle, I told her that my eyes were so terribly dry and itchy and that sometimes they turned really red. She responded, “Get some artificial tears at the pharmacy.” Wow. How’s that for expert medical advice? And then, there’s the ear-nose-throat specialist I was referred to for a lump inside my lower lip. He said it was a blocked salivary gland; I’m just fine. Well, except that I keep biting it because it’s in the way. And so on, and so on.
It is so disheartening that these doctors take a look at the aspect of me that concerns their field of expertise and yet, not one of them ever considers that all these pieces are parts of a whole human being. In 16 years, not one doctor ever saw me as a disabled person living with ME and fibromyalgia, except, of course, for the one who diagnosed me back in 2002. She retired in 2010 at the age of 80 and no one took her place. Her patients were left high and dry because sadly, there are no doctors interested in ME aside from the few already working at finding solutions and reliable treatments. They do not see new patients and getting on a waiting list is out of the question. Unless we can afford to travel to specialized private clinics, we’re on our own, as Jennifer Brea so clearly demonstrated in her film, Unrest.
I always made sure that every health care professional I have seen was told about ME, and I also provided each one with documentation. The consensus among them is that besides the ME, I’m in good health. So . . . besides living with soul-crushing exhaustion and pain, along with dozens of other symptoms, I’m just fine. How can I possibly process that?
You get the picture. Is it any wonder I don’t have time to work on adapting the screenplay that I had committed to do a year ago, or that I barely get any work done on my blogs?! I’ve also got a bad case of appointment fatigue on top of everything else.
It’s a good thing I believe that incurable actually means curable from the inside. These many doctors unknowingly prompted me to muster the determination to empower myself, to find my own way and my own path to healing. I don’t kid myself, however. I know that I am dealing with a serious illness that has huge detrimental impacts on my body and all aspects of my existence.
And when I feel sadness welling-up in my heart, I remind myself that my spirit is whole, and with every breath, I open my entire being to life just as it is in the moment. I know, deep down, that I am part of an ocean of energy that flows mightily through the universe and every cell of my body. I am grateful. And fine.
A trained psycho-social counselor and life coach, (and author of Higher Maintenance, published in 2016 by Balboa Press) Marianne Granger’s commitment to helping people led her to work as coordinator of a volunteer center, and years later, as director of a large food bank. While managing and training employees and volunteers, she wrote and edited promotional and fundraising material. Her love of reading, writing, and cinema lead her to study screenwriting, which culminated in a completed feature-length screenplay. In 2001, she was struck down by a mysterious and devastating chronic illness that eventually became the inspiration for her book. She lives with her husband in southern Canada.