Why start a blog?

I've been thinking about this question a lot, why start a blog? Ive had a few people ask me in the past why did I start a blog about HS if it was something I was embarrassed about. I thought today I would answer that question. For many of us that have HS getting diagnosed posed a real problem, for me, I have had HS for 20 years, it wasn't until I was 16 that I had a doctor actually tell me what it was. I was told that they were related to diabetes (I didn't have diabetes) that I wasn't washing regularly enough or I was washing too much etc. All it took was one doctor to see the abscess and say 

"that isn't diabetes-related you have Hidradenitis Suppurativa."

All I got was a print out off google 
given to me and sent home with another dose of antibiotics. I was and continued to be very very angry for a long time about this, it still angers me today when I see how little is known about HS but at that time I was mostly relieved that somebody had been able to give me a diagnosis. Finally. But that didn't erase the 16 years of pain and confusion and it certainly didn't stop the HS. Over the next 5 years I had multiple operations, treatments, pain medication, consultations with plastic surgeons, pharmacists and tried everything I could from plain old paracetamol to Tramadol and Morphine and nothing seemed to help. I tried magnesium paste, Epsom salts, Vic vapour rub, nothing helped. By this time I was in University and not knowing one day to the next how the pain was going to be, I was ready to give up, give up University, give up going out, give up on my relationship I was so close to just quitting. The thing that stopped me was a rude, ignorant, vulgar women in an ASDA. Believe it or not, this is what stopped me. 

Me as a child

I was suffering really bad with an abscess on my lower back and was struggling to walk, we popped into an ASDA and I decided to get out and go to the loo. I walked to the disabled toilet and locked the door, on coming out there was this stranger stood outside the door glaring at me. I smiled at her and went to walk out the door when she started shouting at me saying 

"I should be ashamed of myself that toilet was for disabled people.! she looked me up and down "you're not disabled you can walk fine my son needed that toilet" (I removed the bad language but you get the point) 

Something about what that woman said was just the last straw I marched right up to her and started to inform her that, yes I can walk but not every disabled person is immobile, that yes i was not disabled but that I was entitled to use that toilet due to my condition and that I didn't need any comment or opinion from someone like her and that if she had a problem I would be happy to speak to her outside.
Obviously taken back by the fact I had confronted her, the woman did not follow me outside and looked very embarrassed indeed but it had annoyed me so much that she felt comfortable enough to shout at me in public, worst of all was that I had almost just walked away. That was a big wake up call for me and was right around the time that I and a friend of mine started talking about setting up a community in University for people like us, whose conditions and disorders aren't visible. That, in turn, led me to start a blog, I had been told that HS was a rare condition. However, through social network, I have found that it isn't as rare as I thought at all and that it affects 1 in 1000 people. I had to do a lot of research in order to find out what I know on HS, I had to speak to lots of different people and when you are newly diagnosed it can be a little hard to separate the fact from the fiction. I feel that if I could help someone newly diagnosed in any way whether it be through solidarity, providing information or just them knowing that someone is out there if they need it then I've one my part. My blog is trying to do just that, raise awareness and provide some sort of comfort to people who may feel like giving up and I think that's a great reason!

Thanks,
XOXO


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