Having health issues which impact your life really sucks. Having doctors that don’t take your concerns seriously and even mock you can make this so much harder. Recently, the #DoctorsAreDickheads hashtag has shed light on how common and degrading this can be for patients.
I spent 20 years with both chronic and acute pain. My right hip and shoulder dislocate on a daily basis. I have a dozen comorbidities. I was told it was my weight, anxiety or all in my head. It was undiagnosed Ehlers-Danlos Syndrome. #DoctorsAreDickheads
— Asher Wolf (@Asher_Wolf) October 24, 2018
I was 17. My baby was 2wks. Dr said I was “overreacting” and “it’s a UTI”. Baby was projectile vomiting. He had malrotation of the bowel. He almost died. That dr won’t look me in the eye now. #teenparent #DoctorsAreDickheads
— Magen Friend (@dani_friend88) October 31, 2018
The #DoctorsAreDickheads hashtag was met with some pushback from the medical community. While some doctors understood that their colleagues often gaslight and are condescending to patients, others believed the hashtag was divisive and rude.
If you see #DoctorsAreDickheads where chronically ill people are talking about how abusive and negligent doctors have further harmed their health, and your first response is to talk about how hard doctors have it, you are missing the point, justifying abuse and silencing us!
— fibro on ice (@chronicskating) October 25, 2018
Twitter user Lindsey (@VMLDSMom) pointed out that many patients who have had bad experiences with doctors have a chronic illness, including people with rare diseases. This hits very close to home, as I have a chronic illness, which also is a rare disease, and I’ve had my fair share of doctors who were dickheads.
A troubling portion of these #DoctorsAreDickheads tweets are people with dysautonomia, POTS, fibromyalgia, ME, EDS, and rare disease. There are patterns people. Maybe we're not teaching the right things in med school, no? Perhaps we need a redux.
— Lindsey (@VMLDSMom) October 26, 2018
Even when I see good news doctors, my past experiences with bad doctors continue to impact me. As I sat down in the waiting room a few weeks ago to a new doctor, my stomach felt like it was going to burst. Sure, this could have been a symptom of my autoimmune disease, vasculitis, but I blame my anxiety. I am afraid of hospitals because I nearly died as a result of medical negligence less than a year ago.
I found myself stuck in a Montreal hospital due to hives, being unable to eat or drink, and anaphylaxis-like symptoms in October 2016. I had no idea what was happening, and neither did my doctors. They didn’t seem to really care about finding what was making me sick. The hospital tested me for HIV, lupus, and syphilis – and that was it. A rheumatologist a spoke to before leaving said I was probably just stressed.
I asked them to continue testing me and to see a doctor to follow-up. They told me that they did not think I had an underlying condition and that I would have to go on a waiting list to see a doctor. I knew absolutely nothing about medicine, but I knew that they were wrong. I also did not want to spend all my time looking up possible conditions on the internet. I knew doing that would make my anxiety worse. After a year of Emergency Room visits and still waiting for a rheumatologist, I left Montreal. At the time, it felt like I fleeing to save my life. In a way, I almost was.
After briefly returning home to the United States, I went to Puerto Vallarta, Mexico with my family on vacation. My body felt like it was crushing itself, and my morale was low because my family was criticizing me for leaving school. The day after my birthday, I was hospitalized again for over a week. I almost didn’t make it that time. My c-reactive protein, which measures inflammation levels, was at a level akin to someone who had just had a heart attack. I also had to receive nutrients through an IV and was incubated. Not receiving treatment, or a diagnosis, put my life on the line.
Unlike the hospitals in Montreal, the doctors in Puerto Vallarta tested me for a variety of rare diseases until I was diagnosed with vasculitis. They took me seriously. Although I am grateful for their care, I am now terrified of going to hospitals.
I am afraid, after what happened to me in Montreal, that I will be told that all my symptoms are in my head. Like most people sharing their story through the hashtag #DoctorsAreDickheads, I’ve had my symptoms played down many times before. I am afraid that they will miss something, and then I will have to fight for my life again and again and again. I can assure you, being afraid of hospitals is not the best thing in the world when you have a chronic illness. I have found myself at a hospital for a scheduled appointment or an Emergency Room visit every week for the past two years. This does not look like it will change any time soon.
I need to work on my anxiety and not be afraid of hospitals anymore, but it is hard. My anxiety and what happened to me are not my fault, but I need to take my life back. Hospitals will never be a good place for me; frankly, they aren’t for anyone. But I do need to find a way to feel safe and not terrified in them.