Last updated: May 2023
I was 11 years old and unsure what was going on with me. I would get these painful lumps seemingly everywhere. It would be days, sometimes weeks, before the pain would let up and all I could do was cry.
My mother took me to the doctor who told me the age-old tale: 'you're obese and need to lose weight.' I saw another doctor who told me I didn’t shower. I told him that I do shower often, because of the smell. He said, "well, you don't clean well enough."
Feeling isolated from my peers
Most kids spent their days playing games while I was on the sidelines because it was too painful to move. I spent hours on WebMD trying to figure out what this condition was that the doctors had no clue about. At 11 years old, I knew being "fat" or "unclean" wasn't the issue.
I spent most days feeling alone and popping pills to prevent infection. To say I felt lost was an understatement! My mother was running all over to get me help and I felt bad that my issues were causing her so much trouble. I would keep the pain and flareups to myself at 11 years old. I thought it would get better... IT DIDN'T!!
The things I thought where boils would come up and I would manage the pain to the best of my ability. The real problem would be the draining. I would be in class and would start bleeding out of the blue. The kids and sometimes teachers would look at me like I was a leper (in the biblical sense). I grew up in Florida, so the heat combined with the pus and blood creates a foul smell. I would be teased, and people wouldn't want to be around me because of the smell of open flesh and pus.
Regaining my voice
I wouldn’t find out what I had until a year later and it helped me to be able to put a name to the problem. Although, the name didn’t help me feeling alone and I didn't know anyone else with this issue. The most poignant memory I have was when one doctor told me I had bad blood and that I would need to have my blood cleaned! With horror, I tried to imagine what that would be like. I imagined a vampire sucking all the blood out of my body or tubes being hooked up and I would of course die on the table... like, can we live without blood in our body? No judgment, but I was 11 trying to understand my body and how it works.
HS is a beast, it’s painful and intrusive. We all know about the pain aspect of this disease, but the metaphorical “elephant in the room,” but what is pushed to the back, is the trauma and mental anguish it causes. As a child with HS, it was hard, and I tried to hide it and hiding the condition did nothing but take my voice. I am here to say at 31, I am taking my voice back.
I am Crystal Moore and I have hidradenitis suppativa!
When you need to vent about HS, who do you turn to first?
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