Monday 18 November 2019

Living With Hidradenitis Suppurativa - My Story.

I've mentioned HS (Hidradenitis Suppurativa) a few times now on Unique Young Mum, and as there's no cure, I imagine I'll be writing about it for a long time. Living with a health condition that has no cure, or no real way of managing the condition, is quite simply heartbreaking.

Image credit: Anthony Tran at Unsplash.
Living with HS is not only heartbreaking, but it's also embarrassing, it's humiliating, it's degrading, it's disgusting, it's painful, it's annoying, it's frustrating, it's life-limiting, it's a confidence stealer, and it has a massive effect on your mental health.

If you would've asked me five years ago what I hate about myself, I would've said my teeth, I regret not getting them sorted when I was younger, I regret letting my fear of dentist overrule my mind, because I am now approaching 30 and have never once liked my smile. Hating your teeth has a big knock on your confidence, so much so, I've said I won't get married because of my teeth.

Your wedding day is one of the most important days of your life, a day where memories are made for a lifetime, a day that's captured with photographs and video's, but at my wedding, I wouldn't even want to smile, let alone looking back on photo's, knowing my over-crowded teeth ruin every single photo I'm in. Here I am as a nearly 30 year old, no longer terrified of dentist, but realising a good dentist is all you need, but time is too late, and finances to dire, to ever be able to have a half decent smile. 

Today though, if you asked me what I hate most about myself, I'd say the HS, and if you don't know me too well, you'd then ask what it is. I would freeze for a few seconds, leaving an awkward silence, whilst I think of a way to tell you what HS is, because just like I think it's disgusting, I also think it's disgusting to tell someone about it. Whilst it isn't contagious, just like the psoriasis I have covering my body that's on show for everyone to see, people do take a step back, and that in itself is rather humiliating. 

Yet I know that step back wasn't meant to cause offence, yet it still upsets me terribly. You see, as if my teeth didn't have a big knock-on effect on my confidence, I also have severe psoriasis, another chronic condition with no cure. Only unlike the HS, the psoriasis isn't something that's hidden, I am covered head to toe in psoriasis, and there is no way to hide that. I sometimes forget I have psoriasis, until someone asks me what it is, or until a shop assistant refuses to take money out of my hand, and refuses to place any change or a receipt into my hand, instead placing it on the counter for me. In those instances, I just want to be the owner of a magic wand, a wand that can magic me out of that situation within a nanosecond. 

I know people are just being cautious, looking out for themselves, but it still hurts. It hurts when I see the look of disgust on their faces, the look of panic as they try to remember if they touched me, the looks to the clock on the wall or watch on their face, I imagine they're counting down the minutes until their break/lunch time, so they can go and wash their hands. 

I don't blame them, they don't know what it is on my skin.

Sometimes I think I would rather them ask me, but other times I'm glad they didn't. Psoriasis is just like eczema, only eczema is more well known. Proasisis is a skin condition - just like eczema - only it has no cure, Psoriasis is a skin condition, that's not contagious - just like eczema. Whilst plenty do know what psoriasis is, there's plenty who don't.

So here I am, walking around with two chronic skin conditions, with neither of them having no cure, teeth that I despise, OH and I also have Irritable Bowel Syndrome, AND Asthma too. The four conditions I have (Psoriasis,  Hidradenitis Suppurativa, Asthma and Irritable Bowel Syndrome), are ALL auto-immune disorders, which basically means my own body is attacking itself.

You may be reading this thinking there are so many worse off than you, and I know that, I think how lucky I am everyday when I think of those worse off than me. However, it doesn't mean that I don't get upset, nor does it mean that I'm not entitled to get upset, because I do get upset, I do struggle, and I do cry. This wasn't the body I was born with - well the Asthma I've had since I was a baby, but everything else has come at some stage of my life, each condition bringing something new, something else I have to deal with.

This post has been so easy to write, yet publishing it is another story. The current time of me writing this sentence is 2;37pm, yet I've been sat on this page since 9:30ish this morning. If I do get round to publishing it, I have no idea what time it will be, I'm not even sure if I want to publish it.

Opening up is scary, it's REAL, but opening up to the internet - well that's just a whole new story, isn't it? 

Jada x