It was midnight on a Monday, and the lesion on my leg was swollen to the size of a dinner plate, hot, and extremely painful. Although I had an excision for a sebaceous cyst scheduled for Thursday with the dermatologist, these were textbook signs of an infection, knowledge I gained from a five-year history of cutaneous staph infections and a muscle abscess that led to the development of osteomyelitis, a bone infection that nearly killed me. With my medical history and immunosuppression, I knew that this was an emergency situation and that I needed to call the doctor on call immediately.
On the other end of the line, a sleepy voice picked up: my dermatologist. Apologizing for waking her up, I explained the symptoms that I was having, that I thought that the sebaceous cyst was infected, and that I was worried that we couldn’t wait until Thursday to take action.
“Well, are you having any fever or chills?”
“No, I’m not.”
“Then you probably aren’t having an infection. The swelling is just from its location on your leg, and there’s nothing you can do until Thursday. There’s certainly nothing you can do at midnight,” she said with annoyance in her voice.
Stunned that my doctor was giving me attitude for calling the on-call line, which existed for emergencies, I apologized again and hung up. The next morning, my mother scheduled an emergency appointment with a general surgeon for later that day.
The surgeon confirmed that not only did I have a staph infection, but I would have ended up in the hospital if I did not get it drained.
I then had one of the most painful surgical experiences of my life, was left with a one-inch draining wound that would have to be packed for three weeks, and was put on a cocktail of antibiotics that made me feel extremely ill.
This isn’t the only time I have been treated with disbelief or suspicion by a care provider. In fact, it is a rather common experience, both for me and for many others with disabilities and chronic illnesses. My stories range from when I was accused of hiding a pregnancy at the age of 14 to being screamed at and called immature by a doctor who disapproved of me waiting to make a change to my medications until I could discuss it with my family. These experiences have made it extremely difficult for me to develop trust in doctors.
Although I have some very healthy doctor-patient relationships in my life, I am extremely wary, bordering on anxious, when I interact with a new doctor, as I don’t know if my concerns are going to be met with suspicion or hostility.
I understand that doctors have to detect when patients are exaggerating their symptoms or are not being truthful, but here’s the thing: trust in a doctor-patient relationship is a two-way street. If I’m going to trust a doctor with treating my life-threatening conditions and complex medical needs, they need to trust that I am telling the truth about how I am feeling and what I am experiencing.
I don’t have a medical degree and extensive years of training, but I have the lived experience that comes with years of living with Crohn’s Disease, a plethora of complications from staph infections to intestinal blockages, and intense medications that cause complex side effects ranging from hot flashes, to flu-like symptoms, to severe immunosuppression. I manage my health needs for hours a week like most people manage their careers, while handling my own career and “other” parts of life successfully at the same time.
I’m not a doctor, but I’m not a novice. When I say my pain is in the upper registers of the pain scale, I’m not joking. If I think I have an infection, my concerns shouldn’t be brushed off as an overreaction. Doctors, being a patient with a disability does not mean I’m your punching bag or your pushover.
If I’m going to trust you with my life, you need to trust me, too.