Yes, On the outside i look normal… ish – But i am chronically ill
For those of you who have been following my videos and blog posts, you may have noticed a complete halt across the majority of all of my social platforms. I have written about the chronic skin condition called Hidradenitis Suppurativia before; and in my sleepless nights even considered doing a video about it.
Hidradenitis Suppurativa (HS) is a chronic, dibilating relentless turd of a disease. Now I could copy and paste what is written in almost every other article online, but I’ve decided that I’m going to do things Peep’s way.
HS was previously referred to as “Acne Inversa” which to be honest actually really irritated me. When people hear the word acne, they instantly relate it to having a spot on your face. HS is nothing like this, while there is still great debate in the medical field about how HS is actually caused, a more recent theory suggests that it is linked to defective hair follicles that break away from the sweat gland. (They use fancier words than me, but I also haven’t spent a billion years in medical school), As a result of this all of the sweat kind just sits beneath your skin and eventually becomes an abscess, well in my case anyway.
The problem with HS is that there is little known about it, little of how it’s caused and even less on how to treat it, or manage it. For those of you who have no idea what I’m banging on about – I’ll attempt to help you understand it the best I can.
Can you remember the worst break out you ever had, how large and how painful it was. Where was it? I’d assume most of you would say on your face, aka: Money Maker. Now I want you to multiply that break out by a hundred. Remember how that break out made you feel, How you didn’t feel quite as dapper, and how your confidence and ego flailed a bit and how much better you felt when you realised you could cover it with make-up and that it wouldn’t be permanent.
Now think of that same break out we are talking about above, but instead of it being a pimple we are talking an abscess, about the size of a golf ball, place that on any area of your body where your skin touches. Your upper thighs for example, you’re under arms, and Yes: even down there.
As you think about this, just imagine if another one popped up right beside the first, then it began to jump around your body like a drunken teenager in a bouncy castle, arm, then thigh, then your tush, then your lady charms or dude charms. Then they begin to tunnel, they become infected, and you become a pile of pain, 24/7. This is the reality of HS.
These abscesses are so painful that you can’t dress yourself, it hurts to sit, to lay down, to breathe. You can’t brush your hair – and even something as simple as doing laundry becomes a mental battle of “I Think I Can”. If you are fortunate, they burst externally – and while the clean-up isn’t entirely fun, once they have burst it is much less painful. If they are deep seated under the skin they burst internally causing you to feel even more unwell, Since HS is a progressive disease there are stages, it is possible for two of those golf balls to tunnel (I’m pretty sure these are called sinus tracts) so that the affected area becomes larger, with abscess’s joining together, leaving scars like tiny little bread crumbs, Hansel and Gretel style, because even when they do go dormant, they will return within a matter of weeks.
In my head I like to think it’s like one of them was lonely so they are all, I’ll come to you mate and we’ll just chill, hence why the join forces.
Treatment options are a merry go round of antibiotics, warm compresses with salt, hot baths, relentless crying and the occasional pity party, Surgery is also an option, you have the option to be lanced; or if your HS has partied too hard and made too many mates, have the entire party cut out of your body with an additional bonus of TWO CENTIMETERES! Sounds too good to be true? Well sadly it is true, which brings me to my next topic of conversation.
The impact of being chronically ill, with a disease that has no cure.
I was recently in hospital with another bad flare up of HS, this one being under my left arm. The swelling so intense from my underarm it extended into my “gun region” and literally felt like I was on fire, I was unable to move or dress myself, every movement I made hurt. Every time the doctor came to examine me and pushed on it, or asked me to hold my arm up I wept. When the Surgeon asked me if I suffered from any other illness, I responded with “Depression obviously”
He responded with “I don’t know how that’s obvious, but okay”
The biggest impact of HS, is on your quality of life.
It’s waking up to change your dressing on your legs, or having to change clothes because your abscess has ruptured while you were out with friends, it’s having band aids in awkward places, and fearing that other people can smell the stench of puss on you from the wound sites. It’s the constant stress on your body of being in unrelenting pain, not to mention the fevers, or the itchy skin that has become a trademark for me when I am about to flare.
It’s about weekly outings to the pharmacy, the one and only place you’ll go because you simply don’t have the energy to slap on a brave face and pretend you aren’t in pain, or you are embarrassed about why you have unshaven armpits, or you can’t put deodorant on.
It’s about living a life scared to have people touch you in case that they press or hold you too tightly that you have to bite the inside of your mouth so you don’t cry. Your scared to be intimate, scared that people will only see the tracks and scars across your body from where HS has taken you hostage.
You can’t do the things you see people around you doing. Because it hurts. For some of us, Work and Uni are out of the question, and merely a pipe dream.
Naturally you hide, it becomes easier for you to stay indoors, where the sun can’t irritate your skin. Where you are able to rest and apply compresses, perhaps sit in the bath all day to alleviate some of the pain. As you do this you begin to realise who your true friends are, eventually people get bored of hearing “I’m sick” and they will disappear, but rest assured you do have support, because you aren’t alone.
You are going to have days where you think you are the ugliest thing to have walked the planet, that you are useless and worthless, that you can’t do anything or that you are failing. From a fellow HS sufferer, please know you are none of these things.
Being obese does not cause HS, however losing weight can help reduce the amount of area’s that can be affected by the disease. Now for those of us who have it, I know, we are literally told to avoid sweating and have a list as long as our arms about foods to avoid and diets to follow. The best exercise for HS is swimming, and you’ll find that being in the water can even reduce some of the pain. Which is pretty brilliant, and we can all pretend to be submarines.
I’ve thought long and hard about if I wanted to write this post, or if I even wanted to share some of my experience, but as i was in hospital earlier this week. There is simply not enough about awareness about this awful disease.
I’m 27 years old, and last week I was in so much pain, one of my beautiful friends had to help me tie my hair up. Another one of my friends sat with me till 5 am in the morning, to wait for the hospital to see me, others worry about me, they hurt because I hurt. I love them, because they are my family. For this reason I wanted to write a post about HS to help them understand, but to let other people like me know they are not alone.
Living with HS is difficult, it is a painful existence, this much is true. Some of us may be able to carry on with our lives and the disease may just remain dormant, some of us however may miss out on our dreams, may miss out on doing things and achieving things we want to do, even if it’s something as small as going on a date, or wearing a dress without sleeves.
It’s okay to not be okay about it, But please if you are depressed, speak to your local GP – have counselling, channel that sadness into something you can do, for you. I feel the best way is creativity, sit down with your thoughts write, draw, play, experiment, that’s just what works for me :P.
Just know that you are beautiful, and of great worth. Your Disease does not define you. You are capable of great things, and that if you ever need a friend, You have me.
You do not, nor ever will suffer alone.