Eff U HS!!!
Hidradenitis Suppurativa (HS) is an auto inflammatory skin condition that is characterized by abscesses (also known as boils) that can grow anywhere on the body. The skin lesions develop as a result of inflammation & infection of sweat glands; it can affect males & females of all ages.
I have lived with this disease for a long time and have spent countless hours attempting to mask the flares and pain of HS but not for myself…so that others would not discover my secret. This writing comes from my heart and I hope to incite a revolution of HS warriors into awareness & self-love. Thankfully for you, I have an issue with transparency…I have no problem with laying it all out on the line. Over time, I will share my past & current experiences with this disease, some of my self-care practices, my dietary changes & professional treatments.
Let me pause right here & say it now…I am not a clinical professional! I do not possess a medical degree. I have only been educated through the school of hard knocks…experience has been my teacher!
Over the past year, I have looked for ways to connect to others with this disease; social media has helped a lot. Until me, no one in my family has lived with disease (or will admit to living with it). As a matter of fact, I have even joined a few groups on various social platforms to help with coping & new self-care tricks. I have even found a few medical professionals that host live sessions regarding HS.
HS has plagued my life for a long time. I am currently 48years-old and can recall struggling with this painful disease since early childhood. I can remember having golf-ball sized boils in my thighs; it would hurt so bad. But for some reason, I never complained to my mom. As a matter of fact she was clueless (about alot of things) until I was in my late teens.
How did I get away with this? I am not sure but I was taught to keep secrets at an early age. I am a victim of sexual abuse and believed that complaining about the boils would put me in the position of revealing the secret. The initial abuser was a groomer and trained me so well that I would experience such sexual trauma by various family friends until my late teens (we can talk about this later too). He told me that he was teaching to make a man happy and since the violator was a family member, I thought he was doing the right thing. As a result of the sexual abuse, weakened parental guidance (my perception) and HS I lived with body odor, urinary incontinence and just a really sick since of love due to extreme urges for sexual contact.
Okay…that got deep quick…let’s get back on subject!
So how did I keep the boils a secret when I was only 5years-old? I learned to wear tight clothing to keep my skin from shifting or rubbing. I’m not sure how I knew what to do but I learned to prefer tight clothing (padded with paper towels) because it would compress the flares. Even today, I still like a tight, compressed dressing for the flares.
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Although I am receiving treatment (from a wonderful dermatologist & rheumatologist), I still have flares…constantly! I will show pictures soon (I didn’t want to run you away instantly). My problem areas are:
- The back of my neck
- Armpits
- Underneath my breast
- Pilonodial cyst (on the tail end of the spine)
- Navel
- Left side
- Groin
Throughout my life, I have done all kinds of things to mask the abscesses…even during intimacy (dark room, no touching, etc.). Let me just say this right here…I thank God for a truly loving husband that has never made me feel bad about living with this disease. He loves all of me…the good & bad! I will admit that his support makes living with this disease easier.
Please understand that this is only an introduction. The writings will include some scientific data & research, resources, and hopefully even some medical providers would like to share. I have a lot of effing words to say about HS and I am not coming alone…my daughters & sisters (in life) are standing with me and soon you will see & hear about their scars! By sharing their effing HS stories, I hope to establish an awareness of a community of warriors who are not their scars. I hope the world is ready…and if not brace yourself because I am saying it loud & proud…Eff U HS!
Sincerely (as you play in traffic with open toe shoes),
Pastor Chandra Corker
If you or someone you know lives with this disease and want to share your story, contact me at effuhs@yahoo.com. Together, we are going to shed a light on this disease and remove the shame!
