A few weeks ago I had a seizure. I was sitting in my kitchen with my 17 year old son, working on his college applications. The next thing I knew there were strange men trying to kidnap me (paramedics) and, when I was finally full aware, I was sitting in an ambulance on my way to the ER. I was told that I was completely unconscious and seizing for a full 5 minutes, then out of it for another 10. While it was traumatizing for my sons, it had no real impact on me. I lost 15 minutes of my life. I’ve lost much more than that in states of disassociation, so all it really meant to me was that I was extra tired the next few days.
As is usually the case, the Doctor’s found nothing. I had low blood pressure and sugar, but nothing else unusual. There was nothing abnormal in my bloodwork, and my head scan was “clean”. I was sent home with the following advice “drink plenty of fluids. If it happens again we’ll keep you overnight and run more tests”.
My children were upset for a few days until they saw that life goes on as it had before. While it might lurk in the back of their minds, they have accepted that there is nothing do be done about this except wait.
The day after, I got a call and an email from my primary Dr’s office, requesting that I make an appointment with her. I ignored the request. Yesterday I got another call and, realizing they will keep calling, I made an appointment. Honestly though, I’m really pissed about having to go see her. I made the 1st appointment of the day so theoretically I’ll be seen right away, then sent on my way. In actuality, she will be at least 30 minutes late for our appointment. The appointment itself will take at least 45 minutes because everything I say she’ll have to say “wait – let me find the right place to enter that on my screen”. Love automation, eh?
None of which matters though, because here is the truth: Our doctors Practice the Art of medicine. Ever heard that phrase? Ever pay attention to that phrase? Most people don’t, until they need medical services. Even then, most people will never have to delve into the sheer ambiguity of these words. Most people fall into the 90% of cases that fit neatly into a diagnostic category.
Those of us that don’t fit into the 90% enter into a nowhere land of blame, shame and incrimination. When a Dr. can’t put you into a category, it becomes your fault. User error so to speak. The ER doc is a perfect example. “There’s no discernible reason for you to have a seizure; must be your blood sugar and pressure; you should be more careful”. Thanks Doc.
I’ve been blamed for so many health issues I can barely see straight. Before my cancer was diagnosed I was told I wasn’t eating enough fiber or drinking enough fluids. Before my psuedenomis lung infection was found I was told I wasn’t adhering to my inhaler regiment, hence my breathing issues. When I couldn’t stop coughing so hard my whole body ached I was told I was going outside too much; not taking care of my allergies, only to find out I had a cystic fibrosis like disease in my lungs.
I’ve been feeling like shit for over a year now. I did track part of it down to a new inhaler that left me with debilitating vertigo and exhaustion. I had a great two week when I went off of it, but alas, there is something wrong with me, and after that honeymoon period, I was back on my sofa.
I see my primary Dr in two weeks and I will tell her there is something wrong. I will tell her that someone where in my body there is an infection and it is slowly eating away at me and might end up killing me. She will look at my bloodwork and say “there’s no sign of infection”. I won’t argue, because I know what she’s saying, even if she doesn’t. She is saying “there is a 90% chance that, with the bloodwork results we got, there is nothing wrong with you”. She has forgotten about the 10%. Maybe she’s never seen a 10%er. I’ll remind her that time and again traditional testing has failed me, that I am often in the 10%, but this will go unheard. She will probably make a note that I’m “over reactive” or “hypochondriac”, tell me to make another appointment in 6 weeks for follow up.
The problem is this: when I leave, I will have an overwhelming sense of shame. Even though I’ve been through this more times than I can count, there will be a voice in my head repeating her words, mocking me, calling me a baby, telling me to stop being a drama queen and get on with life. That voice is the voice of my childhood and my 23 year marriage, and I know, on an intellectual level that it is wrong, but that voice lives in my gut, and the gut is stronger than the brain.
Eventually I will get pain somewhere. When that happens the Doctors will have a place to look, and they will find whatever is wrong with me. All I need to do is hold on until that day. All I have to do is wait for the pain to start. All I have to do is hope that I don’t die before the pain sets in. All I have to do is hope that I don’t get so despondent, so sick of sitting on my sofa doing nothing, that I simply give up.
I’m pretty bummed.