Anonymous

Living.

 

Hi, I live with pain everyday. I live with knowing I won’t get any better; that’s what I think anyway. I have many medical issues, some being easier to deal with than others and some being so difficult to even cope with. I usually state them in the lowest to deal with first then I go into the last one but we’ll get to that.I have PCOS but that doesn’t worry me. I have asthma. I can deal with that. Then I usually tell people I suffer with arthritis to which I normally get a reply of ‘But you are so young, you shouldn’t have that at your age’. I’m 22. I inherited it from my mother. Even though that doesn’t affect me as bad it still does somehow. After i’ve explained my arthritis I explain my double joints and how i’m not allowed to do anything sporty which then they think I’m lazy. I’m really not! Anyway. Then we get to my worst one… Hidradenitis Suppurativa, But for short like many others who cannot pronounce it, HS. I discovered the name early on this year of April 2019 but I had symptoms of this since I was around 17 years old. You are probably wondering while i’ve been yabbing on is, ‘What is HS?’. Well HS sadly is a chronic skin disease. Can develop anywhere on the body where hair follicles are present. People with HS get abscesses, cysts on their body. They can get very painful. ‘But how do you live with this?’ Honestly we just have to carry on like you would. It was my ex partner who first spotted the little spots. So like any concerned human being, I went to the doctor. Who looked at it and said, ‘Yeah you have herpes’. I had to ask her to repeat that. I didn’t believe her, There was no way I had herpes especially when the guy I was dating had taken tests and everything before we even had anything close; plus I knew him well enough he wouldn’t do that to me. Anyway. The doctor told me I had herpes and sent me on my way with a prescription of medication. I took the dosage on the box, twice a day as told by the pharmacy, but yet these little spots weren’t going. So for ages I just left it. But, it got worse. The partner I had at the time who spotted these spots had broken up with me and obviously I wasn’t able to talk to anyone about this. I also forgot to mention where my ones were appearing, the groin. As I was alone with this disease I didn’t mention it to anyone, I just left it and i felt like i couldn’t date. But i did. Months after I got with this guy I felt like I was okay, so I showed him my groin. He was fine with it. Months passed and we would argue. He became controlling but I didn’t see that. He would say to me to just get cured and then apologise. My flares of spots got worse due to stress. We broke up on my 20th birthday and I ended up back with the ex who spotted them.  I went to the doctors who then diagnosed me with folliculitis. Similar to HS but curable and doesn’t last long. Anti biotics given and I was on my way. I moved in with him within a few months and my flares had calmed down. I thought, ‘maybe they’ve finally gone’ and man I was wrong. They came back hard. So bad I couldn’t even get close without pain. Intimacy was at its lowest point between us but he always said nothing like this will stop me loving you. We got engaged around the 4 month mark. We had previously dated and he was my brothers best friend at school and yes people did judge. With my flares controlled a bit and a fiance i thought life was great until October 2017 came. I had a meeting with work due to time off from mental health issues. And I lost my job. I lost my job and my fiance. I also lost my home. So I moved back in with my mum and depression had kicked in big time. I would self harm, I would keep asking when will things go back to normal and then my flares would be at their worst. No one would take me seriously. I had these awful things going on. I wanted to end my life right there and then. My life had gone pear shaped. I didn’t know what to do. I managed to over come these issues and I got myself a new job still in the same industry. My flares would take over me. In the end I was fired from that job too. So for a while I didn’t work. I ended up being in a relationship with someone who didn’t work but I was happy. My flares were still high but that didn’t matter to me. This guy did. I thought things were okay for me and that my life wasn’t all that bad. I even went vegan. We were okay in our relationship until he wrote a note in his notebook. I can actually remember most of what it said but the line of that note that I can remember the most was ‘ Why am i still pretending to love her?’ What was worse is that he kept telling me he loved me the whole time. He had written that note a month before I even found it. I found it when my HS was peaked at the worst it had been for months. So after i confronted him, we split up. Then I got with someone else who i went to college with. And yes i sound like a slut, I’m really not. This new guy was accepting to everything but he never asked me how i was or anything. He ghosted my calls and ruined my new year. He told me that being vegan was going against evolution which was bullshit. So i left him.I got talking to the ex who kicked me out. He attempted suicide over the phone to me. I had saved his life. I wasn’t okay but  during the year I had come to the terms with maybe i am not wanted. Maybe this HS is trying to tell me something. I was fine up until May 2019. I had danced with morris sides at the sweeps festival, I had a drink and a dance with my friends and then my flares got even worse. I had this abscess on my left thigh which was huge. Bigger than a 50 pence piece. On the 9th May 2019 I went to go get a tattoo done by my friend. I wanted to cover up my past. I went into specsavers to visit an old friend. Someone who I had met through an old college friend. His name was Colin. I spent some time with him during his lunch break then proceeded to go get my tattoo then got a text from Colin. I said about meeting up and we did that night indeed meet up. I went back to his flat and we got on. I stayed at his the night and he actually kissed me. I secretly wanted him too. He was kind and caring but I was scared to show him what lay beneath the clothes. The horrid disease that over ran parts of my life. But I said, Fuck it whats the worst that can happen? I liked him a lot. Was he into me enough that it wouldn’t bother him? So in bed I said, ‘can i show you something? Its very personal but before things ever get serious I’d like to tell you’ So I showed him my abscesses. He cuddled me. He smiled at me and didn’t judge me. Didn’t wince. Nothing but a cuddle and a smile. On the 15th May 2019 we made our relationship official and when I say we, I mean me. I asked him out. Around a week later I got a job in a shop and I ended up in A&E for the first time. All because of my HS. This is where things get complicated. I needed surgery. Was a small procedure and I ended up staying the night. Things were getting better, I had been diagnosed with HS properly by professionals but after a month had passed my abscess was hurting so I went back to hospital and surprise surprise I needed another surgery. This time it was a little bigger. This one didn’t even heal. A week later I was back in hospital,  back on a ward with strangers and back in an unfamiliar place. I had more surgery. On the same spot. My thigh. This one was huge compared to the others. This one healed to some sort of degree then a month later happened. I left the shop job as they weren’t really helping or supporting me. I got a new job at a hotel. Just a few days before my start date I was admitted to hospital once again but honestly I knew the procedure, I knew the staff and I was in theatre again. My 4th surgery within 4 months. I had my partner over keeping me company and i had family and my friends over for support but i still felt alone. I woke the next day after surgery and i had doctors around my bedside. Felt a little interrogated in all honesty. But what they said was what i had wanted to hear. ‘We are referring you to see plastic surgeons’ FINALLY! I was getting somewhere. A week later I had an appointment with surgeons. They looked at me. Discussed options with me and I’m now waiting for my surgery. I haven’t been happy in a long time. As much as my HS affects me I still try. I have had some amazing times and made some amazing friends through this horrid disease. Writing this wasn’t easy and I sit here on my bed eating chocolate chips in pain. But I have wonderful people. Colin, My HS friends, vegan friends. There are times where my HS is so bad that I want to end my life but i can’t. Life is like a book. A book has many chapters but this chapter hasn’t ended. YET. 

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