It’s a dreary Monday afternoon, and I’m back in the surroundings of the familiar white-walled waiting room, here to see my dermatologist once again. As grateful as I am for this clinic, it’s not the greatest place to have to visit every 6-8 weeks. I wonder what will come from today’s appointment with Dr. August.
I was young when I first started getting little boils, around 8 years old. My mother had also suffered with this horrendous condition for many years, so when it first reared its ugly head, she knew exactly what it was. My mother educated me and took me straight to the doctor so we could get the ball rolling with the right treatments for me.
What I didn’t realize then, at such a young and naïve age, was the rollercoaster of a journey that was about to unfold for the next 17 years.
The first 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. Only now, looking back over all those years, can I see that this is where my journey to self-acceptance and discovery began.
I was referred to a consultant dermatologist at one of my local hospitals, before long I was transferred to another consultant in a different hospital. I also started taking antibiotics. At 15-16 years of age, I began medication which, unfortunately, didn’t help. It was at this stage in my life where my anxiety was through the roof. Some of the simplest of tasks were completely impossible, or I would vomit if I got anxious and sometimes have awful panic attacks.
In my early 20s, I never wanted to let this disease control my life, I still wanted to be young and have fun. Yes, I obviously had to make adjustments; however, I still made the most of everything. If there was a party, I was there. If there was a night out, I was there. If there was a social event at work, I was definitely there. If my friends where going on holiday, I would join them.
My family lives in New Zealand as well as England so we traveled a lot, particularly over the last few years. I did a lot of soul searching during that time, as being away from reality and normal life gave me the opportunity to try and figure out my life’s purpose. Do I think I have achieved that yet? No, I don’t, my life is still unfolding in front of my eyes as I’m typing this up.
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. 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 absolutely distraught 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? It is in those down moments that I find myself at my lowest points.
The vicious cycle is endless.
HS is one of the most complicated diseases in dermatology. We know that weight doesn’t help with this disease, as it is an inflammatory condition. (When we have extra weight, the body struggles to reduce inflammation.) However, the solution is not as simple as just losing weight, as walking alone can sometimes be a struggle.
Imagine trying to go to the gym and feeling boils growing as soon as you’ve done the simplest exercise. Others will suggest dietary changes. Do you not think I’ve been trying to diet for a long time now? Over the last 8 years, my weight has fluctuated, but always seems to creep back up. I have spent a lot of time over the last few years analyzing myself and come to a few conclusions. Subconsciously, I have kept myself bigger to keep people away. My scars are ugly, I don’t have a normal body. I emotionally eat, happy or sad. Food has definitely been a crutch for me, I have learned that I eat when I am in pain.
My scars affect me more than I think they do.
It does bother me when people judge me, I am only human.
I have trust issues, I am more insecure than anyone would believe. A man has to show me 100% trust and empathy, then I can show my vulnerable side.
Finding the light
In the last few years, I have spent a lot of time trying to remain as positive and focused as possible. Self-acceptance is the biggest issue many people have, and I spend a lot of time telling myself, I am enough.
The mind is such a powerful tool, if we don’t use it to our benefit then it certainly can become our biggest downfall.
To anyone who is reading this, whether you suffer with HS or any other condition, be brave. Always remain as positive as possible, we get back what we give out.
You are so much stronger than you think you are.
Do not let anything break your spirit.
You are a fighter.
Take on the world.