When Your Psoriasis Has A New Friend

It almost seems too good to be true - everything seems to be running smoothly in life. Work is good, life is good, flares are manageable, and I'm able to sneak in a little me time here an there.  As soon as I began to get comfortable in this foreign perfect space, boom I am hit with a different type of flare. I've only referred to it as boils, that's all I would see them as but learned after seeing my dermatologist these boils were none other than hidradenitis suppurativa more commonly known as HS. 

My psoriasis and psoriatic arthritis now had another friend among the fold, and I now had to learn a new skill - manage this new diagnosis along with my current condition.

HS What?

Back in November 2023 I visited Indianapolis, Indiana where I sat on a skin of color patient and community advisory board. While there, a fellow advocate along with a dermatologist shared information regarding HS. It wasn't until during the dermatologist's visual presentation that I realized what it was. I immediately said to both women, I literally have that on my body.

Every female in my family experiences boils, and mostly around our menstrual cycles. I shared that I never really said much about them and dealt with it as they came. Over time I would experience them more, and they were extremely painful. Sometimes the pain was so tremendous it would hurt to walk. I would get these boils on my thighs. For the first time I actually heard a medical name for it. I decided that when I returned I would follow up with my Dermatologist about my experience. Time went on and before long it was well after November. Months passed and I hadn't followed up.

It wasn't until my appointment with my gynecologist that I was reminded to follow up. While doing my breast exam she noticed the "boil" on my breasts. I had already had my mammogram with no concerns, so she told me to follow up with my dermatologist. I had already known what it was, but this was a reminder I had to go be seen.

Learning more about hidradenitis suppurativa

As suspected at my appointment my dermatologist confirmed I have HS. I was in an active flare, so she was able to see firsthand. She shared with me information about HS being an inflammatory disease and connected to the immune system. This was very familiar to me already as a person with psoriatic disease. She gave me tools, and information along with a new topical prescription to manage this HS flare. She also shared that some people experience it at some severe levels, and that if I ever had a bad flare antibiotics could be prescribed. I was learning so much, but at the same time felt equipped with my experience living with psoriatic disease. I was happy to learn from my doctor that more research is being done for HS and that some treatments for psoriasis were also being used to treat HS.

Later I connected with my Sistas with Psoriasis community on Facebook and asked if anyone else knew about or experienced HS. Sharing my own experience, I found out others also had HS or believe they may have it. I was shocked that so many other people living with psoriasis also have experienced HS.

Managing it all

I have been fortunate that my psoriasis flares have been pretty well managed. I struggle with my psoriatic arthritis mostly these days and am riddled with fatigue. Having joint pain, being tired and on top of it having these "boils" from HS flares which have happened more frequently has been difficult. I believe that recently I've had more issues since stressors have started to creep back in my life. The one thing I know for sure about my body is that it will tell the truth even if I don't want to speak it. With that being said I have gone back to my old school ways of managing stress and anxiety.

Journaling is wonderful for me; I've even created my own writing prompt journal. Reading, and even just light exercise has been my recent go-tos as I try to balance my body out. My goal now is to manage it all through self-care and of course continue my medical treatment plan for both my psoriasis and HS. It hasn't been too much of an adjustment, in it all I am glad I have a name to what I thought were just boils.

Have you heard about or experienced HS? Do you have another skin condition along with your psoriasis? How has it been for you to manage your conditions? What advice would you give someone like me who is dealing with two conditions that are impacted by your immune system. I'd love to hear any of your thoughts as I am still on my journey of learning.