Posted by Margaret Donohue on December 20, 2015 at 11:15 AM
You don't know me and as a result my medical history will not be believed until it is. My tests tend to come back normal in spite of obvious symptoms of illness. I have a number of unusual medical conditions going back to birth, literally. Many of these are genetic and rare. They run in my family so I'm familiar with some of them, but the presentations never seem to match text book descriptions. So I'm not believed. I know that. I understand that. That doesn't make it correct. I'm part of a large number of patients with unusual, rare or atypical medical conditions. I am not alone.
So let me explain some things.
- I'm not stupid. If I tell you I'm sick, it's because I believe I am. It doesn't matter what the lab tests say, It doesn't matter what you're training says. Nothing in your experience will prepare you for the likes of me or other people like me. If you don't believe me, I'm not going to believe you. Telling me I can't have the symptoms I have won't help. I remember I was in the process of losing my airway and coughing. The physician at the ER didn't believe a breathing treatment would help. i think he said "it's stupid." After three minutes into a breathing treatment my coughing stopped and I could breath freely. He was surprised. He did the treatment only because I insisted.
- I live with these symptoms. You might want to take some time to understand them. Going with the first thing that pops in your head as a diagnosis doesn't inspire confidence. I had severe vomiting. The tests all came back negative doctor at the ER said "Maybe it's stress." No. Vomiting is not a symptom of stress. I had an atypical life threatening reaction to a medication I'd been on a long time. Not stress.
- Look at me. Get your face out of the computer, the chart and the lab findings, and actually look at me. If you have any understanding of clinical medicine, it might help if you look at the patient. My labs come back normal because I have low blood volume. I've been told I'm not anemic even when I was ghastly pale and fainting. I've been told I have no signs of infection even with pus coming out of my eyes. Look at me it might help you figure out what is wrong.
- I avoid seeing physicians unless I already have a good idea of what's wrong. I don't expect a physician to be able to diagnose me anymore. I have developed a low pain threshhold and a high pain tolerance and a higher tolerance for ambiguity. I started readng medical texts as soon as I could read. It's why I ended up studying medicine and working with a physician after I finished my education in psychology. It's a method for gaining some semblence of control. The alternative is to ignore any symptoms unless something explodes and I can't function any longer. Some people like me do that because it's easier, but we're sicker when we come to see you. We have a greater tendency to shun western medicine and are less likely to see it as helpful.
- Telling me, there's nothing wrong doesn't help. Asking why I waited so long to seek treatment doesn't help. I've had these two responses within 24 hours. I saw a doctor and said I had pneumonia. He said I didn't and sent me home telling me I had a cold. I went home. 18 hours later I went to the emergency room with 103 fever and both lungs full of fluid. The second doctor said I should have come in sooner and not waited so long. The first doctor was the chief physician at the medical group. I showed him the chest x-ray from the second physician.
There are millions of people with rare or unusual medical conditions. I'm not alone. Women with these conditions are more likely to seek treatment than men with these conditions. Women report more trauma as a result of these interactions. Men tend to be more avoidant of treatment and there is a resulting higher mortality rate.