My HS Journey
Last updated: October 2022
My first memory of an HS lesion is burned into my brain: I’m a smiley bright-eyed, fair-haired girl, at school in about 4th or 5th grade, walking down the hallway with my classmates. I had a big lesion in my groin that had been bugging me for a couple of days that suddenly burst and was open, and draining. Every time I took a step, my pants would rub the open wound. It felt like electricity zapped me. The worst pain of my life to that point, hands down. The pain made me tingle all over, flash hot, and sick to my stomach. I tried all day long just to stay as still as I could and not walk unless I absolutely had to. I didn’t tell anyone what was happening.
Before my diagnosis – pain, shame and confusion
Keep in mind that at this time of my life I was on the cusp of puberty. I got my first period when I was 10, which was early compared to my friends. I was teased for wearing a bra and having pads in my backpack. I was struggling with feelings of dirtiness and shame over all of these changes already so there was no way I was going to tell anyone about these open wounds in my groin. I was trying to be as invisible as possible. I needed to fit in. So I suffered a lot, by myself, afraid and ashamed.
I struggled for years with flares. I never knew what was going on. I’d get bad ones that tunneled. I’d get infections. I performed what I called “minor surgery” on myself so many times, silently wincing or quietly moaning in pain. I’d have periods where things were good. I’d have periods where things were bad. As I grew up and started dating, I was self-conscious when I’d get intimate with a new partner. Sometimes they would ask what was going on with my legs. I’d brush it off and just say something like: "I have the world’s worst skin. Don’t worry about it." That seemed to end that conversation, thank goodness I thought, and on I went. I eventually got married and had children. When I was pregnant, I got some bad ones on my legs. A couple of doctors asked me about the scaffolding of bandages in random spots when I’d go for appointments, but I’d brush them off too (we had other things to deal with!), so on I went.
Finding out I have HS
Over time, the lesions moved to other spots: my armpits, under my breasts, on my butt. The stress of a new job, pandemic, and a move across provinces last year kicked it into high gear, I guess. With all of that going on, you’d think I’d see a doctor about it. Nope. I just carried on.
I was finally diagnosed one day, completely by accident.
I had had a dermatologist for about 10 years or so, off and on, to track my moles. As a redhead with skin cancer in her family, I had a routine where I’d get my moles checked once a year. I went to my derm the day before my family moved across provinces for a referral for a doc in my new city. I didn’t want to miss my annual “mole patrol.”
My derm’s resident saw me that day. She checked my moles and after seeing multiple lesions and scarring in my armpits, she asked me what was going on there. I, again, brushed it off. She asked me a few more questions that I thought were so odd at the time. Did I get anything like this anywhere else? Well, yes. For how long? Since I was a kid. That kind of thing. I was a little impatient because I had other things to do that day with the move, I had a board meeting at work right after – you know, the usual. She persisted, had a quick consult with my derm, and I got my diagnosis: Hidradenitis Suppurativa.
It sounded like a Harry Potter spell to me. I couldn’t even pronounce it. My head was definitely not in a place to receive this information and it was very surreal, in part because the doctors that diagnosed me weren’t going to be following me because I was moving. So I got some quick info about HS and left: it’s not curable, I need to lose weight, and was given a pamphlet with some pretty alarming info. I left in shock, but also too distracted with everything going on to even process it.
I finished the day, the board meeting went well but I was definitely shakier than normal. Thank God for great bosses. I told her what was going on right before the meeting and having her there and supporting me was everything that day.
A new path
The day I was diagnosed with HS was the first day of a totally new life. I went through all the stages of grief. I was in a pretty dark place for a while. After the initial shock wore off, when I felt a little stronger, I started really focusing on my health: I built an amazing team of doctors, therapists, and other guides. I tried everything I could to try to decipher my specific triggers and my body’s needs. I changed how I eat, increased my level of activity, started managing my stress differently. The works. I was determined to conquer this illness. I was going to win.
But after a summer of trying to figure things out and my skin getting progressively worse, I needed some time off of work to focus on my health. In that time, we figured out I had a serious vitamin deficiency that was causing extreme fatigue. We fixed that. I got a second diagnosis of metabolic syndrome. I went on medication and am losing weight. I went to therapy and journaled every day to try to unpack some of the emotional factors that contributed to where I was and to help me heal and move forward.
I’m kinder to myself now. I’m a recovering people-pleaser and perfectionist. I have a rule that I never hold anything back from my doctors – even if it doesn’t make sense, or I think it’s embarrassing. I spend more quality time enjoying my family. I have more fun. I feel lighter, even though I’m still struggling at times. I stopped thinking of HS as something to conquer or beat, and accept that it isn’t separate from me – it is me. It’s my life and I have choices about how I live it, who I am, the perspectives I adopt, and the approaches I use to help me flow with the illness, not against it.
It’s not an exaggeration to say the person I am now is radically different in just about every way from the person I was before the diagnosis. By being curious, practicing self-compassion and acceptance, I found myself. I’m living more authentically now than I ever have at any stage of my life. I wouldn’t go so far as to say I’m happy I have it, but I’m grateful for all of the lessons I’ve learned and am learning.
I also found my community, a group of people who just get it. I’m not alone in this anymore. I can face whatever is in front of me. The road ahead is uncertain and I’m sure will be full of periods of good and bad. For example, as I write this, I am currently in a big flare. I try to accept what is, and just move with the day-to-day ebbs and flows of this illness. I have more tools, more resources, more support and I’m confident that I’m equipped to handle whatever comes my way.
When you need to vent about HS, who do you turn to first?