Missteps and Misdiagnoses (Part 2)
In case you missed it, check out Part 1 of this series!
Hidradenitis suppurativa. There was no way for me to know that two words, which at first I struggled to pronounce, would end up drastically changing both my life and my relationship to my body. Finally having a diagnosis set off a wave of emotions. While I was happy to know what was causing all the lumps and nerve pain, the google searches that followed filled me with fear.
When you google HS, you don’t see pages of people shouting about their newfound disability/chronic illness pride – no, you see the rates of progression of the condition, the symptoms that seem to worsen with every glance down the page, and the reports of various medications failing over time. This left me scared as I tried to come to terms with “my life being over” (spoiler alert… it wasn’t).
My doctor journey was not over
My doctor journey was also not over. Although this doctor was able to diagnose me, he knew that he was not the right doctor to treat me as he had limited experience with HS. I was disheartened, for this meant that I was going to have to see yet another person and subject myself to additional poking and prodding and discussing a part of my body that I had begun to feel very insecure about.
The process of seeing this new doctor had to happen quickly as I was in a time crunch before I left for college. This did not allow for me to properly begin to process and understand my diagnosis. The race to “fix me” was on so that I could experience a “normal college life,” and so there was no time for the proper unpacking of all of the emotional baggage that came with being diagnosed with a chronic illness.
You know your body best
A week before I was supposed to go to Chicago, my parents still weren’t convinced that I was well enough to go. That was when I was able to see the first in a long line of HS specialists who would treat me. This doctor was brash and abrasive, but what he lacked in bedside manners, he made up for in knowledge. At the time, he was actively involved in HS research and knew which medications were beneficial for people. He gave me some prescriptions, an ointment, and gauze pads, and sent me on my way. He was confident that in his care, I would get better and that I would be able to go off to college without any issues.
Advocate for yourself!
As I reflect on my story, although I see many missteps and mishaps, I am grateful for the many things that my family and I did correctly. While it was difficult, we kept pushing for answers and not accepting ones that did not align with the signs that my body was putting out there. If anything, I think that is the lesson that I hope to pass on to others.
You know your body best. You know what does or doesn’t feel right, and if a medical professional is not willing to listen to you, it is ok to advocate for yourself. That advocacy may look different to different people – it could be returning to the same doctor and telling them that something is not right, or it could consist of going to different doctors (if you are able to) until you get the correct diagnosis and the right approach you need. The fight for answers can be difficult, and in the case of HS patients, it can take years before a diagnosis – but it is undoubtedly worth it.
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