Hi, I’m Gail Marek.
I’m a Christian, a wife, and a mother—with hidradenitis suppurativa (HS).
My HS story starts in 1998. Throughout high school the same ‘sore spot’ on my leg would come and go. Nothing ever came of it, it would just be sore (like a black and blue mark), then the discomfort would fade away.
In 2005, I thought I had acne under my breasts. It was everywhere else, why not there?! Only, it wasn’t healing. My primary care provider recommended I see a dermatologist. Long story short, HS was never mentioned and I ended up on isotretinoin (accutane). I specifically remember stopping the medication because my lipids got too high (not because it worked), but now I can’t remember if the medication helped what was really HS, or not. At some point in 2005 or 2006 the HS under my breasts faded away (never to come back again).
Sometime in 2006 or 2007, I ended up in the ER because of an abscess on my lower back. At the time I thought it was a bug bite, looking back now, I think that was HS too.
In April of 2012 I gave birth to my second son. To keep a long story short, a few months after giving birth, my HS nightmare began.
Between 2012 and 2016, a single HS lesion on my right inner thigh continuously opened and closed. The cycle was agony because when it closed, the resulting pain prior to it opening again, was unbearable. My team of dermatologists didn’t know what HS was until I typed “straw under my skin” (referring to the tracts, or tunnels) into a search engine—and diagnosed myself. The docs agreed with my findings. Three or four outpatient ‘surgeries’ later and the hack job they did on my leg only made the HS worse because the amount of scar tissue significantly impacted the lesion’s ability to drain once it opened. They recommended surgery that included grafting skin from somewhere else on my body. I told them I was going to look into other options for hidradenitis suppurativa treatment because the likelihood of a positive outcome was only 50/50—that didn’t seem like a worthwhile gamble to me mostly because of my really physical job and the long recovery period. The doctor laughed when I said I wanted to research other options. He told me I’d be back when the pain got to be too much to handle. He also told me to stay thin, not to start smoking, and to avoid stress.
At some point, in the midst of researching hidradenitis suppurativa treatment options, I hit a low I couldn’t rebound from. I remember my lowest point as if it were yesterday. I felt as if hope didn’t exist. I was in constant pain. Couldn’t play with my kids. I could barely even walk at times. I was having trouble doing my job because of the pain. Just like the doctor warned, the pain was too much to handle.
My low looked like uncontrollable sobbing at the kitchen table—the ugly cry of all ugly cries. I’d lost all hope.
The next day I told my boss I might need to be out of work for a while because of the recovery period after surgery. But I couldn’t go through with it. It seemed like the doctors were just taking a shot in the dark.
This sounds really boring, but one of the things I enjoy most is process improvement. Analyzing things to death is something that happens inside my mind as a by-product of just waking up in the morning. I’m constantly—and subconsciously—on the hunt for ways to improve things. Making things better, easier, quicker, and more efficient feeds my soul. I’ve practiced this one skill over and over again in my career and there’s been lots of bleed-over regarding this same concept applied to my personal life. I’d simplified and automated every process in my career, as much as possible anyway, and when my HS was at it’s worst, I began to notice that my methodical approach to problem solving could be useful regarding how I viewed my HS. After all, my health was a hot mess!
I began to look at what the doctor mentioned on my way out the door; I ignored staying thin (I wasn’t obese and so the recommendation meant nothing to me), regarding my non-smoker status, I didn’t smoke, but I did some online research and found that tobacco is a nightshade. If you’ve researched HS and diet at all, you’ll know that the nightshade food group is a major pro-inflammatory offender. At least that bit of info from the doc made sense. I focused on my diet for years, but it was a complete waste of time.
Now, I look back and see that the most helpful advice the doctor gave me, I completely dismissed—because I didn’t understand the advice. He told me to avoid stress. I didn’t think I was stressed—and suffered for years because of my own ignorance.
Looking back now, it’s so clear! Every time I’d dealt with hidradenitis suppurativa lesions was in a season of my life where my closest relationships were in turmoil—there was something majorly wrong, and my heart was completely unsettled.
I remember a day at work, where I’d confided in a co-worker, “I Siri-ously feel like I need someone to remind me to breathe.”
The truth of the matter was, I was so stressed out about my life circumstances, that I was having anxiety attacks and wasn’t physically able to take in enough air to fill my lungs.
Even then, in that moment (and lots of other similar moments), I didn’t recognize that I was ‘stressed,’ and had no idea what an anxiety or panic attack looked like. My co-worker and I laughed because as soon as I made the comment, Siri asked me, “When would you like to be reminded to breathe?”
In 2017, when my HS miraculously resolved on its own, the lightbulb came on—and completely blinded me! The doctor was right. I needed to avoid stress. My HS went into remission when my stress vanished. I’d gone through the excruciating cycle of having lesions heal, only to open back up again, over and over again so many times—it became my new ‘normal.’ I had an intimate relationship with pain. Then the pain disappeared overnight. Instead of the hot and tender-to-the-touch sensation that was so familiar, I felt my body healing from the inside out. I knew my HS was gone! This event—my HS going into remission—became a vast unknown expanse for me, and learning why I’d suffered the way I had, then was able to heal so quickly, intrigued me.
In 2019, after years of living with HS, I decided to get certified as a primal health coach to learn more about overall health, and more importantly, how I ended up without HS. In April of 2019, I passed the Primal Health Coach final exam! The problem was, I didn’t want anyone to know I had HS! After getting certified as a health coach, I spent two years building a business focused on the wrong thing because I was ashamed to tell people I had hidradenitis suppurativa.
Since then, I’ve conceded to myself that my goal in life isn’t sculpting bikini bodies, and there is no shame in sharing that I’ve got HS. That was a difficult pill for me to swallow, but now that the cat’s out of the bag, I am so excited to help you experience remission—just like I did.
Success Starts with Heart…
Still wondering why your heart is a good starting point regarding getting over HS?
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