hidradenitis suppurativa will not break my spirit
by elise axon
7 years old, that’s how old I was, when HS first reared it’s ugly head on my innocent little body. Growing up as an HS sufferer hasn’t always been easy, however I have always tried my hardest to remain positive and never let this debilitating condition break my spirit.
The first signs of HS on my body and my mother knew exactly what it was, she too is an HS sufferer like myself. The early 3-4 years of my HS journey were straightforward and easy, with only mild symptoms. My childhood was pretty uncomplicated with regards to treatments; I had different creams and lotions which helped a little. As time progressed, the condition started to really take hold of my body.
Fast forward to a few surgeries later, my skin still wasn’t any better and after exhausting all avenues (holistic therapies, all medical treatments etc ) my skin just kept getting worse. I had decided to stop any treatment, I got so fed up of filling my body with unnatural things I just didn’t want it any more. Looking back now I wish I hadn’t stopped treatment, as my HS was so much more rapid and uncontrollable without the medications.
Earlier this year I had an opportunity sent my way, I didn’t go looking for this opportunity it landed straight in my email Inbox. At first I thought it was a hoax, my mum and I decided, “why not just reply and see what they have to say?” I had been approached by a tv company, asking if I would like some top medical treatment- “is this for real?” I thought to myself. At first I didn’t want to do it, but actually after more deliberation I’d decided that an opportunity like this may never come up again, I might never be able to afford this kind of opportunity myself. And speaking with the TV Casting researchers, they put my mind at ease that I didn’t have to do anything I didn’t want or felt uncomfortable doing!
Before I knew it I was up in Harley Street London meeting the dermatologist that would be treating me for the tv show - Dr Emma Craythorne. It turned out that Dr Emma knows my Dermatologist, Dr August -in Poole hospital extremely well, and they had been on the phone the previous night discussing a treatment plan. I was then sent to another dermatologist Dr Adam Friedman in Harley Street so he could prescribe my injections. This really was the push I needed to start the injections- I was so scared about the side effects, that I had been saying no for over three years. Knowing what I know now I wish I did it years ago. It took for me to be advised and under the care of three wonderful dermatologists to convince me this was the correct thing to do for myself.
During my Television journey I set up a private instagram account, to document my life. I knew there was going to be some extremely tough times ahead. I wanted to make sure that I had something to look back on to help me realise what I had been through and also how far I had come. After my episode aired on TV I wanted to open my instagram to the public. I want a safe, happy place for people to be able to follow my journey, ask me questions, find support and feel totally surrounded by people that understand. @HSmylifemystory is somewhere for me to be open and honest about living with this awful debilitating disease.
Living with HS is hard.
As an HS sufferer, I have battles that no one understands. People judge, or pass comments about it being because of my fat rolls. Was I obese at age 8? No, I wasn’t. The weight has gradually crept on due to emotional eating and not being able to do the exercise due to the physical pain that I am in day in day out. It is the most frustrating thing when someone uneducated and ignorant about this disease comments on something they know absolutely nothing about. During my life, I have battled emotionally and physically, my moods can go from 100% happy to my lowest in a matter of minutes. Being in constant pain day in day out and the battle of cleaning and dressing my open weepy wounds grinds me down. Sometimes I find myself questioning, why me? Why do I have this?
In the last few months my HS has taken a turn for the worst, I’ve finally made the decisions to have wide excision surgery on both of my armpits first, along with really trying to help myself regarding what I eat and reducing the inflammation in my body by the food I input. Making this decision was hard for me, it’s something I haven’t made lightly but I am 109% confident I am now making the right decision. It certainly is an emotional rollercoaster, but here I am riding the waves!
Trying to share my journey in just a few short words is hard, but please take some comfort in me saying ‘Your are not alone!’ We are all human beings, and we all have feelings, you need to be able to talk about having HS.
So a few words form me to you....
Be strong, be open, be bold, be brave, shine bright and never let HS stop you from following your dreams because you are all beautiful.
Knowing your worth is vital with this condition, I know now after all these years that ‘I Am Enough’
You Are Enough!