Amber’s Story

Hello everyone, my name is Amber and I’m a black, 30 year old female from Indianapolis, IN

This is my story…

My HS symptoms began around 13 or 14 years old, I first thought it was an STD though I wasn’t very sexually active until high school. I still had sex but I hid my body a lot in fear of the guy’s reaction, lots of sex in the dark. I realized it wasn’t an STD when they were in my armpit as well. I went to Planned Parenthood for birth control as a teenager and told them about it and they dismissed it. They marked my chart with little spots on my intake form where I said I had the boils but never told me what it could be because they had no idea. They just knew it wasn’t an STD so they didn’t really care since that wasn’t their specialty.

I had been told by different doctors that I had SARS, just boils, or just to use Hibiclens but it wouldn’t go away. I found out HS had a name in 2015, after reading about it online though I saw no purpose in seeing a doctor since I had no health insurance and there was no cure. In 2017 a dermatologist properly diagnosed me with HS and recommended I try Accutane, but after researching the side effects I declined.

I currently have stage 2 in my armpits and by age 16 they were in my groin, under both breasts by 23 and most recently buttocks; it progresses over time to different areas. I’m currently self-employed as a massage therapist and have been doing that since I was 18 so HS has always affected my working life. Having good body mechanics helps a lot but there have been several times I’ve had a flare up in my armpit or under my breast and I couldn’t work. I just wear t-shirts so clients have no idea I have it.

The pain from HS is sometimes unbearable. It’s a throbbing pain almost like a toothache, and then when it ruptures it leaves a gaping hole in the skin.  I have many scars that are over a decade old that just don’t heal.

Other challenges I’ve dealt with having HS has been lots of depression, people say you’re pretty and you look good but in the back of your mind you’re thinking “yeah right, if you saw the real me you wouldn’t say that”. I see myself looking at everyone’s inner thighs and armpits and wishing mine looked flawless like that. I played basketball from 4th grade to 10th grade, and once the HS came in 8th/9th grade I became embarrassed to play. I was the tallest on the team so my arms were to always be up blocking shots or shooting or rebounding. I became so self-conscience about players or the crowd seeing my armpits my game got worse and worse and I was cut from the team. In retrospect I’m sure I could have played with a t-shirt under my jersey, but I didn’t want to ‘be different’ and there were moments when a flare-up was excruciatingly painful to play.

I have a boyfriend now that understands and he is great but other people I have dated have not been so understanding. Many times I wouldn’t let the person I was dating see me naked and I wouldn’t dare show him or anyone my scars. Only about 10 of my close friends and family members know I have HS and about 5 have seen it up close, 0 have touched my HS, and I just feel like I’m holding this huge secret. I don’t wear sleeveless shirts unless I know I don’t have to put my arms up for anything, and it’s hard to wear short shorts because of the thighs chafing.

There are 3 stages involved with HS, and I I believe I am a stage 2 of HS in all areas. I can function normally unless there is a flare-up and then I am just cautious of the way I move or sit. I had one in my groin a few weeks ago but was feeling energetic so I decided to go on a bike ride with my mother.  During the ride my mother asked me if I started my period….the boil ruptured while I was riding the bike. Pretty much all of my sleeves on my t-shirts have stains. I manage my HS by trying to pick the blackheads out before they turn into boils and by using lots of CBD and Tylenol. I’ve tried the Keto diet, turmeric pills, losing weight (75 lb), not eating nightshades, using spray deodorant, and nothing helps….

I became a massage therapist because I truly love to help people. Just for that hour they get to relax and focus on themselves. The more snoring the better and I like that I don’t have a “robot” job, meaning every person’s body and experience is different.

I’ve been practicing massage therapy for over 10 years and I have seen a handful of clients that have HS. But most HS is in places that massage therapists don’t massage (groin, armpits, butt crack…) so I wouldn’t see the boils either way unless they told me. It’s easy for a person with HS to be embarrassed about getting a massage but I assure you as a massage therapist we’ve seen worse. You don’t want us to touch it and we don’t want to touch it so it’s a win for both parties lol. Just let the therapist know ahead of time if you’re ever uncomfortable or if something is bothering you because we aren’t mind readers, we’re body readers!

A person with HS can benefit from massage therapy because it is a form of self-care for anyone. It boosts circulation, helps with range of motion and joint mobility, and eases muscle pain and tension. Emotionally and mentally it helps with depression, headaches, mental alertness, self-awareness, sleep quality and just an overall sense of well-being. You may also check with your doctor to see if you can be prescribed massage therapy and your insurance can pay for it. You can also pay for your massages with a health savings account or flex spend account. Massage is therapy, not a onetime quick fix Frequency and consistency is key. It’s also not a luxury as it truly is a form of self-care like going to the dentist or the gym.

Next month I will be introducing the Utopia Table into my practice which will incorporate cymatherapy, hydrotherapy, and massage therapy. We all use sound and music in our everyday lives, and Cymatherapy is the study of sound in visual form to heal the body.

The idea is that everything is energy and everything has a frequency or a vibe as most people call it. This vibe or vibration is measured in Hz. When our bodies are in certain frequencies that resonate with us we naturally heal ourselves. HS has a frequency as well as any other disease.

With that being said I will be conducting a case study on myself to see if this will cure my HS so stay tuned!  Catch me on social media FB SC Twitter @ bambisbliss and IG bambisblissmassage. Or subscribe to my YouTube channel for updates on my progress with HS and finding a cure!

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