I had a visit the other day with a rheumatologist. It went amazingly well. Before the visit I’d taken notes. I’ve been keeping track of day-to-day symptoms for several months now. I thought about what I used to tell my patients before they were going to see the Psychiatrist. Doctors speak in the language of symptoms.
After the doctor came in and introduced himself, I launched into my list. I tried to present is as dispassionately as possible. Doctors are not well versed in the language of emotion. About half way through I looked up and apologized for having such a long list.
He said, “No, I appreciate it.” He was actually listening to me! I’m so used to the blank stares and curt dismissals of Neurologists. When I was finished and we had talked a bit more about the history of things he paused for a moment. “So, you’ve been dealing with this for 5 years, and have probably done a lot of research. What do you think is going on?” I about dropped my pants without being asked. I’ve learned that you should never suggest a possible diagnosis to doctors. They instantly see you as a hypochondriac who sits around looking for symptoms on the internet all day. It insults them that we common folk think we could figure anything out related to our health.
I told him I thought I was experiencing a progressive autoimmune or neurological disorder. I knew when the illness first appeared as an unrelenting pain in my left scapula over 5 years ago that something serious was going wrong with my body. Turns out I was right. The illness has finally progressed to the point where the symptoms can no longer be dismissed. And truly, I am relieved. I’ve been waiting for an accurate diagnosis for a long time.
I read this book when I was about twenty about a young woman who was injured in a diving accident and became paralyzed from the waist down. I’m pretty sure her name was Joni. The book was about how the accident and resulting paralysis deepened her faith. The book terrified me. I couldn’t imagine a worst fate than a physical disability. I was so afraid that God would strike me down in order to use me in some way.
Long before I had any illness I worried a lot about my health. My worst fears conjured up things like the C word or Lupus or some other health problem that could be disabling. I would say it was an obsessive fear that took the form of fear of contamination. I washed my hands until they were red and had abrasions trying to protect myself. I knew this was coming.
Some might suggest that I attracted that which I feared the most. I would disagree. Life has given me exactly what I have needed to further my spiritual evolution. Life has been in the business of removing every obstacle I’ve constructed to prevent myself from fulfilling my life’s purpose. And I am an expert in creating obstacles.
I’ve always had to learn things the hard way. Anyone that might have given me directions to avoid some of life’s hazards would have been wasting their breath. I had to experience things first hand, and sometimes more than once before deciding if it was unworkable.
Throughout the course of the illness I’ve often felt ashamed. I’ve felt like a failure for not working, and for not being able to cure myself. I’ve shamed myself for hurling through life in such an adventurous way and in a way that did not fit into a societal norm. I was horrified to find myself nearing the age when retirement becomes an option disabled and without a retirement fund. I’ve never been one to prepare for the future, or so I thought.
So now here I am and I’m OK. Being forced to step out of our busy-ness obsessed society has given me a completely different perspective on life. It’s changed my relationship with my son. And all that adventurous living, well, there are things that I’ve done and places I’ve been that I may not be able to experience in the same way again. I don’t have the endurance I used to have, that is just factual. So I’m glad I’ve lived a life that has been abundant in experience.
I don’t know what the future holds. There are medical tests pending, and more on the horizon. There are many possible outcomes, although my mind is attracted to the worst possible ones. Things could head in several different directions. I could be facing something that is more disabling, or I could continue to limp along as I have for many years to come.
Vindication is defined as “the action of clearing someone of blame or suspicion”. For those along the way who have doubted me (doctors, friends, relatives), I have many words to say that you will most likely never hear. Often people dismiss things that they don’t understand. The experience of chronic illness is unique and can only be understood by those who have experienced it. People who haven’t experienced it have no business inserting their uninformed opinions into the dialogue.