Dear doctor M.,
I am the woman who has visited your office once or twice a year for the last five years. You know, the one with Myalgic Encephalomyalitis, which you like to call Fibromyalgia because M.E. remains foreign to you in spite of the mounting medical documentation available worldwide. This illness has taken a horrendous toll on my life for the past 16 years. I live the life of an elderly person; in fact, many of them are in better shape than I am. I receive Meals-on-Wheels from folks much older than myself. Pain and lack of energy are my constant companions 24/7, 365 days a year.
Walking into your office I can sense, although you seem sympathetic, that you are as uncomfortable as I am. There is nothing much you can do for me and although I sometimes express my frustration, I do understand why you can’t provide the help I need. I know that:
- There is no cure for this illness
- Treatment is trial and error
- M.E. specialists are very rare
- You only know the drugs you know
- You’re not comfortable prescribing medical cannabis because the College of Medicine makes it a bit complicated for you to do so
- Doctors are no longer allowed to refer patients to ophthalmologists (Waiting lists are years long)
- Physical therapy is given in order of priority: Accidents and operations first, then all the others (I’m told it’ll take years for me to have access to PT)
And because I cannot afford to go to an expensive private practice for any of my required medical care, I sit in your office in the hope that this situation will one day change. You prescribe all kinds of stuff but that’s it. You are my drug guy…and although you disagree, I refuse to take those drugs I know will make my condition worse. How does that make you feel, I wonder. I’m guessing you feel pretty lousy about it. Doctors like to fix people and you can’t do that with me. So we go through the motions. You give me a quick physical and I go home with my pain, exhaustion and frustration while you go on to the next patient that you can more likely fix. By the end of the day, you’ll probably feel better. I won’t.
Within our Canadian health system which is the envy of many countries, I can’t help but wonder why I am left to my own devices to treat, if not the M.E., at the very least the resulting conditions that are treatable. Why do I have to take on the “system” by my self to make sure I don’t lose my eyesight, the use of my arm, and the health of my already mortgaged kidneys and arteries? I am losing ground and feel I have no choice but to begin a long and complicated journey of writing attention-getting letters to health services institutions, newspapers, ombudsmen and elected representatives.
This weighs heavily on my already weakened body. You’re just human and flawed like the rest of us; I know that you have to work with a health care system that doesn’t always make it easy for you to do your job. I wish I could do more to help you help me. Really.
See you on the path of healing and beyond,
Image from the painting Weight of the World, by Donni Lockridge