Being chronically ill has so many more facets than simply the daily medications and coping with the illness itself. I sometimes think that the hidden aspects of illness are harder to cope with. Although they can resemble the daily frustrations of a healthy person who navigates day to day relationships with people at work, the sick person is navigating relationships with doctors. Relationships with family and friends also change, sometimes for the worse. But it’s the relationship with the doctors that can be so frustrating. A doctor’s time is limited, so it’s imperative that the meeting be fruitful, that the patient should feel that he/she got the important points across. Did you know that, as a patient, you actually have to do homework before visiting the doctor, or the meeting might be a waste of time? Oh, you’re not feeling well enough to do homework??
One of the most painful circumstances for a patient is to feel that their complaints are minimized by the doctor. I’ve personally read comments in my chart such as “her complaints are nonspecific.” I feel like the comment should have read “her complaints don’t make sense.”
Does this doctor mean that my complaints don’t fit into a meaningful medical category? Is he implying that I am malingering? Or is he just trying to say that I have a disease that manifests so differently in everyone that he is stumped? Or maybe he is just embarrassed to admit that he can’t help me?
I don’t know. And why should it matter? Because I want to be taken seriously as a normal person who got sick. I spent a lifetime of proving myself as a student and then as a doctor, and I just feel that I shouldn’t have to prove myself as a patient. I’m sorry that my symptoms are nonspecific but they sure make a mess of my days. I’m sorry if I don’t make a lot of sense, but please just believe me and do your best to help me. Please don’t judge me for being honest. Some of my symptoms are downright embarrassing and I wish I didn’t have to discuss them. But if I’m not completely honest with you, doctor, then how will I advocate for myself? So don’t make me regret having told you everything.
This is some of the internal dialogue that I go through as a patient. THIS is a large part of why it’s tough to be sick. This is what people cannot understand unless they’ve shared the experience. And it’s also why one should never judge another. It’s the hidden side.