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The Best Way I Found to Cope With the Loneliness of Being Misdiagnosed

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When physicians or physician assistants misdiagnose patients with chronic illnesses, that makes patients feel like they are alone in fighting whatever chronic illness they have at the moment. It’s sad to say those patients may feel alone for long periods of time, since the diagnosis process may take months or even years.  

While I was participating in an internship program at a doctor’s office, I noticed a big bump underneath my right breast. I asked one of the doctors and one of the nurses to look at the bump, and they noticed it was as big as a tennis ball and was hot to the touch. They told me to go to an urgent care center after my shift. At the urgent care, the doctor came into the examination room, looked at the bump, and said “Ah, must be MRSA,” which is a type of bacterial infection. He gave me antibiotics for the bump and told me to take ibuprofen for the pain.

A few months later I noticed yet another bump, this time under my arm near the bra line. I again went to urgent care, and they said it could be a staph infection. So I did another round of antibiotics and went on my merry way. The following year, I was abruptly let go from my job, due to reasons unknown, and was of course feeling very stressed out. I found another bump and went to the urgent care again. I was finally diagnosed with hidradenitis suppurativa (HS), a chronic inflammatory skin condition that may be caused by malfunctions in the body’s immune system. It often starts with small, pimple-like bumps or boils that show up on or under your skin, and can progress to painful abscesses that may eventually burst or rupture and cause scarring. 

There is no known cure for HS. There are four stages in total for HS, and each stage is more severe than the previous stage. It can be painful in any stage and on any part of the body. The flares may or may not come back even if you do treat the underlying condition. To make matters even more frustrating, many physicians don’t know what HS is and cannot even pronounce it correctly.

After I was diagnosed, my mom and I looked it up and did all kinds of research. I learned that a dermatologist is the best kind of doctor for HS. I found a dermatologist who recommended I have a couple of surgeries to treat the bumps HS was causing. After those procedures, I decided to leave that dermatologist due to a language barrier and other reasons. I was very happy with my new dermatologist. I had a few more flare-ups afterwards but was treated very well, and eventually went into remission.

Sometimes I have felt alone with HS, even though my mom is a nurse. She tried to take care of me the best she could and I am so very grateful that she was able to take care of her one and only child. But although my parents gave me all the support and care they could, I still felt alone. 

Being misdiagnosed multiple times made it feel isolating to me because I felt like there was no answer as to what was causing these bumps. I didn’t know when I would finally get an answer to my skin problems. I didn’t think there was anyone besides me who had HS. 

I was desperate to find a support group locally. I looked online, in newspapers, advertisements, and anywhere you could think of. I finally found a group on social media, and suddenly I wasn’t alone! I was so elated to learn more about HS and learn more about the people who associate with the various stages of HS.

I really enjoy being in a social media support group because I discovered there are more people who have HS than I originally thought! In a social media support group, you can help support each other mentally, emotionally, and spiritually. You can lift each other up by sending pictures of your pets, send good thoughts, send many insights of what you can do to take care of the problem one symptom at a time, and help each other out in many ways as we can — one day at a time. 

Originally published: February 7, 2020
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