Hello, my name is Jessica and I’m a 38-year-old woman from Richmond, VA. This is my HS Origin story.
I experienced my first HS symptoms at the age of 15. I was surprised and went to my mom immediately who said it was a boil and suggested we pop it. (She’s old school so that was her solution.) I didn’t seek medical attention until I was 22 and my condition had continued getting worse. By that point I was already in stage 3 with tunnelling and HS sites in my groin, buttocks, arm pits and lower legs. I had unhealthy eating habits and was working in high stress environments at the time.
It was a General Surgeon who first gave me the diagnosis of Hidradenitis Suppurativa, but the words were spoken so casually and they did not document it. Later I received the diagnosis again from my Dermatologist. For me this was a foreign language with reason to investigate. At that time in my life it was normal for me to want to listen to the doctor versus being my own advocate, as I am now.
What I mean by being my own advocate is that I had to take the initiative to document my history with HS. I learned on my own that my body responds within 12 hours if I’ve eaten a trigger, and I know I can expect the next three days to be rough while it passes through my body. On day four the inflammation is reduced and healing begins again. I also know if my thighs itches I’m overheating and I need an immediate shower to try and prevent the flare from reaching the surface.
Currently I’m in stage 3 with my HS, and along with that I also have Psoriasis and Pyoderma Gangrenous. My treatment plan consists of Humira, which helps tremendously but isn’t my ideal treatment option because I’d rather go the natural route since I believe natural medicine is best. I have changed my diet several times starting with juicing, then I did the AIP diet which helped eliminate triggers. Currently I’m following a vegan diet which has suited me best with the elimination of soy and garlic.
My everyday life has been impacted the most. Simple things like getting out of bed aren’t always easy. When I’m dealing with the negative feelings often associated with HS there are a few things I do to help. I keep my mind clear with meditation, and expressing my feelings in every moment. I don’t isolate myself because it keeps me feeling trapped (although at one point I actually thought it helped me). I also use support groups and TikTok.
I’ve talked to my family about my HS and they are my greatest support system. Everyone is aware but they still have difficulties understanding that not all pain is seen. I’m lucky because I have a Hero in my life that helps me get through the extra hard days, and that is my daughter. This queen holds momma together in so many ways and I love everything about her. It’s in my darkest moments where she is the light that shines through me. Her giving me positive affirmations that I’ve instilled in her heart is a constant reminder that I am strong, powerful, and worthy. I may be her Mother but she is my ROCK!!
Some tips that I use to help manage my HS includes taking supplements and listening to my body for what it needs. Things like Zinc (I complete a daily dose of 50mg], Lysine [100mg], Vitamin D [5000 IU], Cohosh [40mg] and oil of oregano. With the oil of oregano I consume a weekly or monthly dose of about 4-5 drops under my tongue (disclaimer: it’s hot and not for everyone!)
For wound care I find it helps my body heal faster when I let my food and overall skin care help with healing. If I need to cover a wound I find pads are more flexible than most gauze and tape in itself. A positive experience related to HS for me would be seeing more holistic approaches from doctors around the world but I haven’t yet found one locally that uses this type of natural treatment for HS.
If I could say anything to a HS Hero who is struggling, or a newly diagnosed HS patient I would say be your own advocate. It’s going to take time to figure out what’s best for you, and you’ll have days where you don’t want to stick to the plan. Just know it’s okay to have some off days and don’t apply pressure to yourself to do more than you can.
We are all fighting together and just because it works today doesn’t mean it will work tomorrow, but don’t quit on yourself. Don’t let others make you feel like because they can’t see it, it isn’t real. Educate them, don’t assume they know how you feel… tell them and spread awareness.