Hello, my name is Heather and I’m a 31 year old woman with HS Disease. As the afterword of my self-published book states: “Heather is a flower that grows in Scotland. It grows on moss-covered bogs and infertile, barren land that can no longer produce vegetation. Even so, wild Heather finds its way to burst through its surroundings so that it can proudly display all of its differing shades of violet to the world”.
It’s as if it’s saying “Look, here I am! I have grown in all of the places you thought I never could.”
This is my story…
I was 17 when my HS symptoms first developed as a dark red lump on my inner thigh. My doctor at the time had no idea what it was, so he gave me a topical ointment which did nothing. It took 7 years for another family doctor to properly diagnose me.
In the decade after that first “spot” the disease began to take over my body. I had bumps and wounds under my breast, inner thighs, groin and it’s now spreading to my armpits. Of the 3 stages of the disease I’m in the most severe, stage 3. In this stage HS causes tunnelling between wounds, which means that some of the spots are connected. So, when I press on one spot, it will begin to leak fluid in a different one nearby. HS also causes you to have open wounds that may not heal which are very painful when clothing rubs against them.
To support myself I have 2 different jobs and need to take painkillers every day to do them, so yes, HS has affected my work. The pain from the condition can be relentless, sometimes hurting to stand, sit, or lay down. It takes me longer to get up from a chair then most people and sometimes I have a limp, but I act as if nothing is wrong. I do it all with a smile on my face but have a good cry every once in a while behind closed doors.
My full time job is as a receptionist at a busy event venue in my hometown. I have worked there for 8 years, but only some of my co-workers know about my HS. I’ve had one person who does not know say that when I limp it looks funny, but the people who do know have shown me great compassion. They make life at work more bearable by giving me more bathroom breaks and even ordering me a special chair to sit in that my HS won’t stain.
I am mostly seated for that job and it is not very strenuous, so it is perfect for me right now. I’m also employed part time in a retail position and it’s a bit more of a challenge as I am on my feet for the entire shift. It can get uncomfortable, but I power through as I am only there twice a week. I’ve debated going on disability for my HS, but I enjoy being a contributing member of society and don’t want to give that up just yet.
Another challenge of HS even worse than the physical pain is the emotional and mental anguish. Knowing I will likely never have children is a reality I am slowly starting to accept. I don’t know how it would be possible to care for a crying baby when I can barely take care of myself. I’ve also come to the realization that I will likely be alone forever.
HS has mutilated parts of my groin that make me very self-conscious, and it would take a strong man to be able to look beyond my wounds. I’ve given up hoping that things will get better, as I know they won’t. This disease has sucked the life out of me, and my friends and family have started to notice. It is a burden to have to wake up each morning and go through the same inner and outer pain as the day before.
I’ll often wish for my life to end, as I know then I will be at peace and no longer be in pain. I used to be a happy and cheerful person, but now my future seems very bleak.
I feel like there is nothing to look forward to anymore. Even things that make me happy, like traveling, are getting harder and harder to do. I cannot walk for long periods of time and it hurts to sit on an airplane for hours. I used to love playing tennis with my dad, but HS has taken that from me too. I can’t run around like I used to, as the pain is too much. I may seem like I’m healthy to others because they can’t see what’s underneath my clothes, but inside I am screaming for help and a way out of this madness.
There are many ways I manage my HS. The most obvious is that everywhere I go I’m looking behind me to make sure I didn’t leave a mark on someone’s expensive sofa. I usually put towels or bed sheets down where I sit and lay. There is also a homemade deodorant I use which has coconut, tea tree and lavender oils in it. My older sister makes it for me because regular deodorants and antiperspirants sting the lesions in my armpits.
As for the medications I’ve been prescribed, there has been clindamycin creams and gels (which do not work for me), an antibiotic called Doxycycline (also didn’t work) as well as a form of Birth control that is supposed to help with HS flares. I haven’t started it yet though because of an Auto-Immune Protocol elimination diet I’m starting in January. I want to see if I can heal my HS with diet alone, and one of the rules is no birth control. So, I am unsure at this point if it works or not.
I’ve also had one surgery for my HS so far, in May 2016. The plan was to remove a large lesion on my left breast, as well as several painful lesions on my groin. However, once I got on the operating table and my surgeon had a better look, he decided he would not operate on my groin. Instead telling me he “Wouldn’t know where to start and where to stop.” It was that bad.
He decided to refer me to a plastic surgeon for the lesions on my groin, so I am meeting with one in January 2018. The lesion on my breast was removed by my general surgeon, but after a week the wound opened. I spent the next 5 months getting the wound cleaned and dressed every other day. Today, it is fully healed and I have a fairly large scar on my breast. This doesn’t bother me however, as it beats the alternative!
My family is very supportive of me, and have been my saving grace. I used to hide that HS causes me so much pain, but recently have begun to open up to those around me because I need their support. They understand the pain I feel and do whatever they can to lift my spirits. Whether it’s calling doctor’s offices, coming with me to appointments and surgeries, or just lending an ear when I need someone to talk to, my family is always there for me.
Even with their support though, most days I feel crippled by this life.
I want my spark back, and for my passion and love of life to return. HS takes everything from you – and my hopes and dreams for the future keep crumbling more every moment. I don’t know the woman looking back at me from the mirror anymore. She’s hurt, depressed and in turmoil. I don’t want to live feeling like a victim forever.
My scars are there to remind me of the hard times, but there is something else peeking out from inside of me too…grace. The grace to live this life I’ve been given and to accept the things I cannot change. Instead, I want to be a warrior. I want to be a lighthouse for others and show them the way. “Look” [I want to say to people], “Look what happened to me and I’ve come out stronger and wiser than ever before.”
That’s why after hitting a very low point in my life due to HS; I went on an inner journey to discover why I was so “damaged”. I ended up writing a book about it called The Lighthouse: A Journey through 365 Days of Self-Love’. Essentially it’s about learning to love myself, flaws and all.
It is recently self-published (and available now on Amazon).
UPDATE OF HEATHER’S STORY
It has been about a year and a half since I first wrote my story for HS Aware. In that time my HS has only gotten worse. I still have severe Stage 3 HS and experience active, chronic flare-ups in my groin, buttocks, inner thighs and both armpits. My HS is so severe that I don’t consider anything a “treatment” anymore. It’s all about management for me.
Managing my pain is the hardest part; sometimes needing to take up to 8 Advil or Extra strength Tylenol just to make it through the day. No doctor has ever offered to prescribe me anything for the pain, so there is not much else I can do.
In my original story I talk about wanting to try the AIP diet and I lasted for 3 weeks on it in January 2018. The good news was that in those 3 weeks I lost 17 lbs, the bad news was I am not a big meat eater and meat is high priority in the AIP diet. They even recommend eating offal, and that is something I would never be able to do. Because of the high meat content in the diet, it was not a sustainable diet for me. I haven’t tried a different diet yet but in the next few weeks/months I am hoping to begin the elimination of processed sugars, gluten and dairy from my diet. It will be a gradual change over time, as opposed to eliminating everything all at once.
In January 2018, I did meet with a plastic surgeon, and he seems to be one of the most knowledgeable in my city in regards to operating on HS patients. I was scared to do the surgeries so I kept delaying them. Then in July 2018 I was in so much pain that I had a last-minute surgery to remove a 6 inch long HS lesion on my sitting bone. Recovery was very difficult and after a week the wound opened (seems to be a theme with me) and it had to heal from the inside out.
So, imagine having a 6 inch long open wound on your sitting bone/bottom that you cannot directly sit on or put pressure on until it fully heals? I had to go to wound care 3-4 times a week to get it cleaned out with saline solution. I had to stand at work for the next 5 months, until December 2018. I could not put pressure directly on the area when I drove so I had to put pressure on my left leg while driving to prop my bottom up and relieve the pressure off it.
The bright side of that is I now have very strong quads!
I couldn’t even sit down on the toilet properly, I had to lift one side up and anytime I had to go to the bathroom, I had to shower afterward to ensure the open wound was kept clean. Thankfully my work has a shower in the change room so I utilized that a lot. But even dressing myself was hard as I could not easily bend down to put on socks, so having to undress and redress myself 3-5 times a day was a chore. At one point I refused to drink water because I dreaded going to the bathroom… but I got through it.
Despite all of that, the hardest part about the recovery from that surgery was on my mental and emotional health. I couldn’t fathom how I was going to deal with this type of recovery, and at one point, about a week or two after the surgery, I was researching medical assisted suicide. I thought to myself “This was a MINOR surgery and I can’t even handle the recovery, how on earth am I going to find the will to recover from full groin surgery/reconstruction?” It was a scary thought and I went into a dark place for a while. I began going to therapy in hopes of finding ways to mentally and emotionally cope with this disease and am happy to say that today, I am much stronger. I feel like I am now better prepared to handle the recoveries for my two upcoming surgeries this year. I’ll be having surgery on my left armpit in July and my groin surgery will be this winter.
A very interesting chain of events occurred after my story was posted on HS Aware in October 2018 which led to me meeting them. I attended the HS Symposium in Toronto, Ontario as a patient and brought copies of my story to give to people I connected with.
As I was giving my story to one man and telling him how it was published on HS Aware, a lady in the row of seats behind me got up and introduced herself. She overheard me talking about HS Aware and told me that she is actually a part of the group. She gave me her card and I contacted her when I got back home and told her of my interest to meet fellow HS patients in London, where I live, and she suggested a London, Ontario Meet up. The date and venue were set, and in December we held our first London meet up with an attendance of 6 people – 4 of whom had driven from the GTA or farther!
My mom and I were the only ones from London, however, we all shared our experiences and had a great time connecting with each other. Finally, I didn’t feel so alone. In January 2019, the woman from HS Aware who I had met at the Conference reached out to me again. This time she asked if I would be interested in attending a digital storytelling workshop for HS Aware to share my story in a digital format. I was so excited for this opportunity and of course said yes. (Stay tuned as my video will be posted on HS Aware’s social media platforms within the next month or two.)
I met other people who help run HS Aware and we had a great weekend making our videos and forming new friendships. I finally have made friends who know exactly what I am going through, and their stories of remission have given me so much more hope than I ever thought was possible.
I recently started a blog to track my weight loss in hopes of better managing my HS, so I am excited to see where that takes me. If you would like to follow me on my journey, you can read it here: https://htalpa.wixsite.com/healingheather
Although I still have two major surgeries later this year and have to deal with the daily physical pain that this disease causes me… I wouldn’t trade my experiences for anything. They have made me the Warrior I am today and I am so much stronger mentally & emotionally because of everything I have gone through. Sometimes you need to go into a very dark place before you notice the dimly lit candle in the corner… and that flame, although small, is always enough to light your way out of the darkness.
If you are a HS patient in the London, Ont. area and would be interested in contacting Heather, please leave a comment below.