What is Medical Gaslighting?
Those of us living with rare disease have challenges others may not realize. Fighting against a system which tells us we are not sick, we are not suffering. That perhaps we are making up our illness.
When I first realized how sick I was after diagnosis some doctors seems to brush off my diagnosis of EDS Ehlers-Danlos Syndrome as something that only affects my joints. This made me feel unheard, and misunderstood. EDS is caused by a default in the collagen of the skin of the sufferers of this illness. We are born with it, and many of us are not diagnosed until we are much older. I was not diagnosed until I was in my twenties.
Rare disease means becoming aware of the problems your disease can cause, when we as patients tell doctors them doing specific tests may cause us more harm than good. We tend to be met with, “I went to medical school, you did not.” Yes, I understand doctors went to school and studied all sorts of diseases, but there is no specialist I have come across that can tell me everything there is to know about my diseases. Normally they are asking me what my disease is doing to me, because they do not have another patient like me.
Medical gaslighting is being told you do not have your disease. This has happened to me and countless others. Whether is it from doctors, or people on the internet. No on knows what we experience besides us and our families. People who figure they know how sick we are and have not been around us, truly know little about our diseases. The sad reality of this, is sometimes doctors fall into this category as well. Doctors have instead of looking at my file have looked at me and told me to my face while in the ER, “you do not have these diseases they are really rare.” This is medical gaslighting, I have the diagnosis’s and I have the scars to prove it. I live with complex illness and having to prove myself to doctors, and people on the internet regularly is exhausting. The reality of the diseases I live with is that they are disabling, they cause harm and people not believing me doesn’t change the reality of the illness nor their hardships they bring.
Working together with doctors who believe you and support you will get you further than allowing people who do not understand your illness attack and gaslight you. Do what is best for you, you know the truth as do I. Living with complex illness means advocating for yourself regularly. Do not allow them to silence you, I will not give into the push to quiet me because of gaslighting. Medical abuse is real and is something which needs to be discussed, medical gaslighting is not OK. When we come to the ER and are in distress the last thing we need while fighting for our lives is to have someone tell us we do not have the diseases we have. This can lead to lose of life, is being right more important than listening to your patient?