My Doctor Horror Story
Last updated: March 2022
In the early stages of my HS diagnosis, I put up with a lot from doctors. I was scared and unsure of what was happening with my body and so I was willing to listen to whichever doctor was willing to offer me a solution – even if that meant having to suffer through rudely phrased questions, the doctors’ students barging into the room to observe me unannounced, or baseless assumptions about me that formed their reasoning as to why I got HS.
This experience is common to those who have a condition that is considered to be rare or commonly misdiagnosed – you put up with it because you know you don’t have that many doctors to choose from. So you are more patient and willing to overlook some of these uncomfortable or inappropriate experiences in the hopes that the doctor will finally give you a treatment that gives you some sort of relief.
That one particular doctor
While I think I have had quite a few poor experiences with doctors, one experience in particular takes the cake. He was the third doctor that I had seen since I first noticed an HS flare. He was highly recommended by the doctor that diagnosed me and was a notable HS researcher. This doctor was definitely highly credentialed, but what hid behind the shininess of his accomplishments was a horrible bedside manner.
In his office, I always felt like I was being rushed. He would be quick to inject or incise or switch up my medication without fully answering my questions. Since he was a researcher, he had written a lot of papers that he would routinely send to me to read. But when I would return for my follow-up appointments, he would refuse to discuss the content of the papers with me. He would scowl at me whenever I brought up any unpleasant side effects from the medications that he prescribed me as if I was somehow undermining his research with my complaints. Most importantly, he did not think my knowledge of my own body was important.
The final straw
My previous experiences with him should have been a warning sign, but for this particular visit, I was back in my hometown from college and needed immediate relief. There was no time to look for someone else. I came in with a large flare that I wanted him to see. I was going to ask for steroid shots to help calm the inflammation since that had worked in the past. The doctor barged into the room and I braced myself for some off-the-cuff comment as I lifted my arm to show him the flare. He proceeded to tell me he was going to incise the flare. I objected to this, as I did not feel that the flare was bad enough to justify doing that. He argued with me, eventually not allowing me to get a word in. I gave up arguing.
I tried to calm my nerves as he injected the numbing agent into my arm. He then began incising the flare. The numbing agent, however, had not set in yet, so I asked him to stop and wait a bit for it to kick in. He refused and kept incising the flare, ignoring my pleas to stop as the pain was unbearable. But he kept going until he finished the job. At that point, I was crying and relieved that the torture was over. Seeing me in tears, he said “that wasn’t so bad” and offered me a lollipop.
That was the last time I ever saw that doctor. I decided that I should never be treated like that by any healthcare professional – nor should anyone else. After months of searching, I was able to find another doctor. She actually treated me with respect and valued my voice in regard to my treatment. For me, this was a critical difference for my happiness as both a patient and as a person.
When you need to vent about HS, who do you turn to first?