On a Friday morning a several weeks ago now, I got a phone call from my clinic. Truth be told, I had forgotten all about it until my phone rang.
The call was short, though. I’m not deficient in magnesium, and I won’t need additional infusions; it’s a good thing.
But I’m disappointed. It’s not that I want these IVs — it’s that I want anything that might help me get better. Had I been deficient in magnesium, we would have at least one answer.
This is the great paradox of being ill and no one knowing exactly why. Patients end up crossing their fingers for test results and diagnoses they wouldn’t wish on anyone, not because they want these illnesses — because they want to know how to get better, whatever the illness is.
I was really disappointed when I tested negative for multiple sclerosis, for example. Trust me when I say I don’t actually want to have multiple sclerosis; what I want is research and treatment for what IS wrong with me. And MS, while researchers are still looking for a cure, does have research and treatment. There are bike rides, fundraisers, campaigns.
Again, I don’t want MS — I want people to believe me and others like me when we say we’re sick. I want doctors to stop telling us we’re just depressed or deconditionned, or that it’s all in our heads. As far as I know, up until the last few decades, MS was an illness much like chronic fatigue syndrome/myalgic encephalomyelitis — no one knew what caused it, there were no good tests to prove it was there, and many sufferers were treated basically like hypochondriacs — until there was enough research to yield useful data.
I’m hoping to be well enough soon to begin to be more active in the fight for visibility, research dollars, and understanding and support from the government agencies that should be helping us.
Just because something is not yet understood, it doesn’t mean it’s not real. Please join all of us in our fight against this disease — please help spread the word. We need help; we need a cure.