Sometimes I wish I had cancer because even if you look “healthy” people understand that your body is quite ill. There is an understanding in society regarding cancer and it garners much more understanding and compassion. In reality, I’m sure that just having a nice clear diagnosis would be a huge relief and a great help. I wouldn’t run into doctor after doctor that takes one look at my epic of a medical record, asks me a few questions and then just tells me my symptoms don’t align with any disease they know. So, why don’t we run another volley of painful and expensive tests to see if a possible answer magically appears?
In my case, absolutely, doctors are just practicing. More like guessing and hoping. There are many doctors that through their attitude or their words suggest that I am some sort of nutty hypochondriac with a long history of duping doctors. That everything I’m experiencing is in my head or that I’m just seeking drugs or attention. I feel like I should walk into doctor’s office with pictures of me rock climbing, skydiving, and surfing in Australia. Prove to them that there is no way I would trade my old life for this struggle of pain, misery, and constant suspicion of the truth of my situation.
If only they realized what my life is now! I’m in so much pain that a new day is a challenge not a gift. My seizures are out of control and they are terrifying. Can they even imagine what it is like to have your world go black and lose control of your own body never knowing whether it just falls dead or starts to throw my limbs around like the biggest fan in the middle of a mosh pit? Have they tried putting themselves in my shoes? Am I even a serious thought when I’m right in front of them? Am I a thought after I leave the office? I don’t know if a lot of the doctors I see even care on a basic human level or if I’m just another case file.
While it is becoming more common for people to leave a doctors office without any clear diagnosis and we all know how much misery loves company, not knowing the actual cause of my illness adds a large burden to an already heavy load. Not only do I experience a certain amount of discrimination from both society and the medical community, but I also struggle internally with the lack of answers to my constant questions. What is happening to me? Why is my body such a disaster? Why can’t anyone help? Will I ever find a successful treatment? Is this my life now? Is there any hope for improvement? What do I do? How am I going to survive? It is a devastating situation. No diagnosis means no prognosis. I don’t even get a good guess on whether I will improve or devolve. What does my future look like? Do I have a future? I just don’t know and no one can really tell me unless we suddenly find a diagnosis. Even then, it could always be a misdiagnosis, which is an equally scary proposition.
I have lived with this unknown illness for seven years now and had no choice but to find a way to cope. I remember the first two years, all the fear, the anger, and the tears. Oh so many tears. I remember going to new doctors who often seemed confident that with this test or that one they would find a result and treat it. Life would get better. I remember the hope, oh how I would hope, even while whatever the possible diagnosis was terrifying. It meant an end to this nightmare roller coaster I was strapped into against my will. It meant knowing. I think that human nature struggles to always find the answers. Our psyche rails against a problem with no solution. A part of me has accepted that there may never be an answer. That science and medicine just don’t understand the human body well enough to determine the failure in my body. Now when a doctor believes he has a diagnosis and just needs to run a few tests I tend to give the idea a mental shrug. For many years now the result they were expecting to be abnormal was fine and some other random one was not. They scratch their heads, shrug their shoulders, and this life, as I know it, continues its many cycles. I know that if I clung to the idea that this time we would figure it out, another failed diagnosis would be crushing. Hope is a dangerous thing. If you let it get too high the fall is equally long.
Maybe someday I will get my diagnosis, or maybe I won’t. What I have to do is find a way to cope with the curve balls that my body throws my way. Life is a balancing act of managing my symptoms and my mental state. Some days it is a losing battle. It is not a science, it is an art, and I’ve be waving this particular paint brush for years. It doesn’t make it an easier thing to live with, but in a strange way I know what to expect, or at least how to manage it. I do my best given the tools that I have, but one tool seems to be missing—my diagnosis.
I get through my days like an alcoholic; one day at a time. Some days it is more like one hour or minute at a time. Looking any further can be very quickly overwhelming which creates a downward spiral that is almost impossible to stop. Better to just take the tiny steps and hope to stay standing just a little longer.
I try every day to do the right things. To eat right, to get what exercise I can, if I can, to get sleep and keep a regular schedule, to always take my meds and manage my body the best that I can. Sometimes it helps and I can keep balanced, other times it doesn’t seem to matter what I do, everything just falls apart. Ultimately, I really don’t have much control over the situation. My body drives the car and I’m just along for the ride. I miss the life where I was in control and my body was an after thought. I never really thought about what would happen if I lost my health, but now that I have I’m envious of those that still live in blissful ignorance of how far life can fall when their health does.