Have you every considered the power of ‘your’ story?

Stories are everywhere and a fundamental part of being human. We are so honoured to be able to give Hayley a platform to share her journey. Hayley felt compelled to write this piece to raise awareness of her, lesser known,  auto inflammatory disease, while also sharing powerful messages about body confidence. Hayley hopes that by sharing her story, she inspires others to not only have self compassion but also develop resilience to take positive action to feel proud and confident in their own skin. 

Hello there, welcome! My name is Hayley, I am 30 years old and I can safely say that I have never walked past a mirror, looked myself up and down, and thought “shit yeah, I’m lovin’ every inch of what I’m seeing.” 

Now, I am no different to anyone else with “body battles”. I’m guilty of looking back on old photos from times when I thought I was fat, and wishing I had that body now. I try on one hundred different outfits to make sure I’ve successfully hidden my “pooch”. I’ve strategically placed myself in the middle of photos just so my arms don’t look too big. 

I’ve also been guilty of taking what I had for granted: a fully functioning and pain-free body. And I am here to tell you today that I am still learning to love what I have. 

In early 2016, at 26 years old, I found what I thought was an ingrown hair in my groin. I was walking around for weeks with a painful and ugly secret under my clothes. It didn’t seem to be going anywhere in a hurry, and in fact, it was getting greater in size the longer I left it. Once the pain was no longer bearable, I cried in embarrassment to my housemate and showed her the now golfball-sized lump I was growing. We decided to head to the doctor, who then sent me to the ER, where I was kept overnight to lance and drain the growth. This was my first experience with having multiple people hover over my groin, and “um and ah”, and poke and prod, and give me a look of pity. The doctor told me that I had an abscess and that now it was gone and stitched up. The end. 

Spoiler alert: it wasn’t “the end”. It happened again, and again, and again; in my groin, in my armpits, on my side, and on my bum, until finally I was diagnosed with Hidradenitis Suppurativa (HS for those that want to keep things simple). HS is a chronic skin disease, or an auto-inflammatory disease, that causes abscess-like lumps in places such as the armpits and the groin. Skin legions develop as a result of the inflammation, and I can tell you firsthand that it causes everywhere on your body that joins and rubs together to always be in some form of pain. It. Is. A. Body. War. Zone.

Here is the fun part: the exact cause is unknown; there is no one-size-fits-all solution; there is no definitive test for diagnosis; it is lifelong; and it requires constant management. Talk about a tough pill to swallow!

Soon after my diagnosis, I discovered that 1% of the population suffer with HS. In Australia 0.67% of people have it and it is most common in women (3:1 ratio). I spent two years really trying to tackle a solution with multiple doctors: I tried elimination diets, going dairy-free, cutting out gluten, herbal medicine, acupuncture, lymphatic massage, and single-handedly kept almost every antibiotics supplier in business. Whilst I was feeling frustrated and embarrassed about my scarring and in incredible pain, I still tried my very best to soldier on with a can-do attitude. Honestly though, I was wearing pretty thin both mentally and physically, I wasn’t sleeping as I couldn’t do it comfortably, and I struggled to get from A to B without wincing in pain. Having a good cry in the shower at night time had become a routine, mainly so that I didn’t have to see my naked body first thing in the morning and have it ruin my day. I was really failing with those positive affirmations. I can safely say that at that time I hated my body, and I felt like the feeling was mutual. 

Finally in 2018, I was approved to take part in a trial for a drug called Humira. Taking Humira involves weekly self-injections (into my beloved pooch) and, as far as I’m told, the use of the drug will be indefinite until they find a cure for HS. It compromises my immunity and no one is entirely sure of the long-term side effects (but hey, I’ve always been a risk-taker). It has been one of the only solutions that helped keep my flares at bay. Since then, my quality of life went from a 2 up to a 7. Humira was a pretty big game changer, and so was eliminating brewer’s yeast from my diet (good god was giving up beer a sad day). 

After 2 years on this treatment, my body has settled. While my self-esteem certainly fluctuates as much as the next person, I have finally been able to focus on rebuilding my relationship with my body. 

Joining 23W at the beginning of last year was the first big step I took. Strength and conditioning works perfectly for me as it doesn’t cause too much grief with friction in my sexy areas, and I’m loving feeling strong! 23W is made up of women who lift other women, as well as a badass amount of weights. When I see myself lift a bar above my head in the mirror, my internal dialogue has been shifting from “eww, look at that armpit” to “that’s a new PB, woo hoo!”  The community has been so supportive and when I’m there I forget what my body looks like and am more impressed with what it can do. The payoff is that I am now noticing changes in my body. My weight is going down, and my quads and my booty are laughing in the face of my scars! I love 23W so much that after moving away for 3 months, I made sure to move back somewhere close so I could get back to that bar rack and to all the lovely faces in the place. 

I’ve come to terms with the fact that I’m stuck with HS, but I don’t want it define me and everything I do. I’d love for HS to be a fun little side fact about me, like my horoscope (which is Scorpio in case you’re wondering) or my favourite TV show (FYI, it’s New Girl). 

I hope this has brought some awareness to HS and the hidden pain that so many people suffer from. And I hope that you give yourself a thumbs up the next time you see yourself in the mirror. You’ve only got one body, so learn to how to live with it and love it.