Trigger warning ahead:
I have Hidradenitis suppurativa, Stage 3. It is a chronic autoimmune disease with no cure. It has been untreated my whole life. It started when I was about eight years old. I am thirty-five now. I am terrified and humiliated to tell my story. But it needs to be heard.
My groin and thighs are covered with boils. My father would restrain me and stab thumb tacks into the boils before he raped me. I have never asked a doctor about them. They are a constant pain, making it difficult to walk. Nothing helps. They never go away. Most of my past partners would act disgusted by me and tease me and shame me about my HS.
I finally broke down this week trying to figure out what else is possibly wrong with me. Or at least what is causing my chronic fevers and plethora of other horrible symptoms. They look awful. When I came across the HS diagnosis online, I was shocked. I had always just brushed them off as bad ingrown hairs that I needed to simply endure the pain from. I was so thankful to find out that it is not from being unhygienic. I could not go see my PCP because of my fever and COVID-19. So, she said to get to urgent care asap. So, I went, and they sent me to the ER immediately.
The whole team was female. The doctor told me not to be ashamed or feel dirty. And she said she was proud of me for taking this big step in "coming out" about this horrible disease and the trauma. Because of the depth of the skin scarring and lesions I need reconstructive surgery and skin grafting. I am so scared. I would rather have any other part of me under the knife again. I do not know how to face this alone.
I also have Rheumatoid Arthritis, Trigeminal Neuralgia, Occipital Neuralgia, Crohn’s Disease, Fibromyalgia, Ankylosing spondylitis, EDS, CPTSD, an inoperable brain tumor, and Endometriosis. I just had emergency surgery that saved my life and removed two of my infected organs last month. And two years ago, I had brain surgery. I am so tired. I cannot handle another surgery on top of the others I need this year. I am also a fulltime student. And my grandfather just passed away from COVID-19. The immensity of my grief is endless.
The shame I have felt my whole life over this is unbelievable. Just the condition alone without the trauma is enough for anyone to feel enormous shame. The doctor said I must do my best to stop self-shaming and saying that it is gross, that I am gross.
My rheumatologist is starting me on Remicade chemotherapy infusions in a week. We hope it will lesson the HS, RA, and Crohn’s to a bearable level. I do not want to be alone anymore. I just want hope and I have none left.
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