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Hidra what? My battle with Hidradenitis Supparativa and lessons in self-love

11 Jan 2017

*warning: some graphic images via hyperlinks

I was nine years old when it all started. I had just begun my menstrual cycle thinking that would be my only rite of passage into womanhood. Little did I know, there was a second rite of passage on the way, triggered by puberty and hormonal changes.

Enter Hidradenitis Supparativa (HS), a chronic skin disease that affects the sweat glands causing very painful, boil-like lumps in the intimate areas of the body such as armpits, thighs and buttocks. It may seem very foreign to you, but this disease is quite common, with the National HS trust estimating that 1 percent of the UK population suffers from it. And with a population of around 64 million, a good 640,000 others may have it – many too embarrassed to seek medical help due to the nature of the condition. This disease would cause me many years of low self-esteem and depression, but also teach me to truly love myself.

My first lump was embedded deep into my armpit and caused barely any issues. I was 11 at the time and very excited (and nervous) about starting secondary school. In fact, I was completely preoccupied with making sure I had the right hairstyle and the annoying pleats in my school skirt were ironed. I was utterly oblivious to the pain that would occur when my lumps came to the surface. When they did, they ruptured and left me unable to move my arm whilst they healed. I also started getting lumps on my inner thighs and they left big horrible scars after they healed, putting me off shorts for many years.

I became disheartened and ashamed of my body, unable to understand why no one else my age seemed to go through the same thing (or so I thought). Changing in front of the other girls for Physical Education also became the worst thing. I became sullen and rude whenever teachers questioned why. I didn’t want anyone to know and I couldn’t really explain the disease. The condition became even harder to cope with when I started sex education. Descriptions of STDs which have the same symptoms as my lumps, such as herpes, left me wracked with worry. I hadn’t even had my first kiss yet, never mind sexual contact! Yet, with my naivety, I was convinced I had an STD, it was the only thing I thought made sense.

I often had misdiagnoses such as a simple bacterial infection (though HS has been linked to an overactive thyroid, sweat glands and the immune system). By this time though, my cycle of lumps which ruptured and left horrible scars became so frequent I began taking days off school. My mum was my rock, she would help me bandage my wounds up and give me useless prescribed antibiotics that were supposedly meant to help my HS. She always reassured me that we would find a way to manage my condition.

However, after many years with the disease I became quite depressed. I was in sixth form and while my peers were getting into relationships and having sex, the thought of anyone seeing my body repulsed me. I could only assume that I would be rejected and a guy would think I had an STD. I also only wore really baggy clothes because friction between my thighs or sweating would trigger the onset of a lump. This added to my already low self-esteem of not being like my peers who could wear whatever they wanted. I was also put off from exercising as repetitive movement could cause a new lump. I felt like I couldn’t live my life properly and would never fit in.

Still, more medical research had been done into the disease, doctors and charities alike begun to investigate its underlying cause. The Hiddradentis Supprativa Trust is dedicated to funding much needed research and the NHS finally has an information page. But, the day I felt I really had a chance of beating this condition was when I saw it on a program called Embarrassing Bodies on Channel 4. The doctor mentioned surgery as a last resort, but an effective way to control HS. I had taken all the antibiotics under the sun and hardly wore tight clothes. I called my GP that same day and made an appointment.

After many referrals to a specialist unit in London and thorough risk assessments, I finally got my surgery date. The most persistent lump in my right armpit would soon be a thing of the past. The operation went well but the healing process was a nightmare. It took six months for the wound to heal and I couldn’t go into work without the use of my dominant hand.

Strangely though, in that period I learned to come to terms with HS. The operation forced me to stop seeing it as a debilitating ailment, but ultimately a part of me. Specialist doctors had informed me that my condition was not as bad as many others who had HS and with the right treatment I would be able to live with the disease. I also learned how to truly understand my body and triggers. That is, the likeliness of a lump before my period or that overly tight knickers were not my friend. I would also visit my GP for regular check-ups to discuss whether any prescribed medication was still effective and if it needed to be changed. Learning to my monitor my body this way, definitely improved my self-esteem. I finally felt in control by taking an active role in dealing with my condition.

Equally, I found online forums and websites of people who learnt to control their HS through careful monitoring of their diet. Others found that light exercise was still viable and suggested special techniques to avoid friction. This was information that I would not have bothered looking up if not for being house bound while my wound healed. I started wearing shorts too, realising that the scars on my thighs were my battle wounds and something that I couldn’t and shouldn’t hide. They’re a part of my story of how I continue to battle with HS, boosting my confidence to no end.

So, my advice to any young person out there too scared or embarrassed to talk about their HS- you should! It’s a part of you, and with the right medical attention and some researching of your own, you will find something that works for you. In the meantime, love yourself wholeheartedly. When I did I found happiness in spite of it all.

Image by Priyanka Meenakshi (@priyankameenakshi)