Health · Lifestyle

Living with a Chronic Disease

When I’ve said to people in the past that I have a skin disease, they give me this look. It’s a look I’ve come to recognise as “empty acceptance”. They understand that a skin disease is a bad thing, but because they can’t see it, that’s all they can really process – their understanding is only skin-deep (ha, punny!). They sympathise for a few moments until the topic of conversation changes and they ultimately forget entirely.

I had this disease for a lot longer than I initially realised; I’ve been living with eye-sore scars for the last eight years, but it took until a month and a half ago to finally receive a positive diagnosis. I used to just think my skin would get really irritated from shaving, and that the bloody lumps and boils and spots that would show up for weeks on end afterwards were ingrown hairs, or a shaving rash. I’d never experienced either before, so I didn’t really know. But these would show up even if I hadn’t shaved in weeks, and I didn’t really know what to make of that.

It wasn’t until I went to my local sexual health clinic when I was living in Chester and decided to take the plunge and ask the nurse if she could give me a once-over, that I could finally give what I had a name – hidradenitis suppurativa. This wasn’t a positive diagnosis at all – this was a best guess. I was told to go straight to my GP and ask for a second opinion, and I did. Thing is, the doctor was useless. She’d never heard of it, and she had me sit spread-eagle on the bed in her office while she Google’d pictures to compare. Talk about bedside manner and instilling confidence in your patients, right? Sitting like that with your hoo-ha out next to a complete stranger, even a doctor, is extremely uncomfortable, let me tell you that.

I was given a three-month course of basic antibiotics that were normally given as a starting point in treating people with acne, with the hope of the doctor that they’d clear it up. They didn’t. The pills were huge, and I suffered from blinding headaches every day. I couldn’t even walk around my own house without wearing sunglasses because I became so photosensitive. Also, my skin got even worse, so I stopped.

It took another two years of basically no treatment for me to finally be put on the NHS waiting list to see a dermatologist, and the day I received my letter in the post saying I would be seen in six months time, I cried. I cried happy tears because, hopefully, someone would be able to finally tell me what was wrong with me.

I already knew this before I went in to see the dermatologist, but when I heard it come from her mouth, and not from detached words on a trusted website, I couldn’t help the swelling in my throat or the tears that came after the door to her office closed behind me. The thing about HS is that it’s incurable, and therefore chronic (or chronic, and therefore incurable). It has no cure. I will live with this for the rest of my life, and it will never go away. Sure, I may have a small stretch of time here and there where my groin and my armpits aren’t lumpy and make me look like an in-costume London Dungeons actor, but every day I wake up with the knowledge that that could change, and I can’t stop it.

HS occurs in areas of the body that become moist and warm easily, and where there is an excess of sweat glands. In those areas, large sore lumps appear under the skin, sometimes rise up as sensitive boils, or pus-filled lumps. No one’s really sure why. As the boils and spots disappear, “tunnels” appear under the scarred skin. If I poke one of my scars, you can feel nothing beneath it, sort of like a pothole. HS has nothing to do with cleanliness either, which was something I was able to come to terms with very quickly when I realised taking cat baths whenever I finished doing any movement was not helping. But, that doesn’t mean I have a choice when it comes to using hospital-grade antibac scrubs in the shower.

I won the sexy biological lottery of having this in my groin and armpits, so you can take a guess at what my sex life’s been like. It’s always been a bigger issue in my groin rather than my armpit, but the day I saw the very first lump appear under my right arm in the mirror, I burst into tears. At the time I was barely coping with the fact that this was chronic, but realising it had spread? And I was only 20 and had this for the rest of my life? That tipped me over for a while.

When you realise that something is going to be a part of your life forever, it’s easy enough for anyone to say that you’ll “get used to it”, or that you “just have to accept it”. But normally when people say things like that, it’s about their soon-to-be husband’s bad habit, or they’ve painted their house a new colour that they suddenly don’t feel so sure about. You can’t say it when you walk back from your local pharmacy each month with a full carrier bag of medication that you had to double-check to make sure they’d given you two of everything because you’ve been put on the highest dosages of multiple meds. When the first thing you do every morning is confront the medication you will potentially be taking for the rest of your life in the vain hope that it might send your skin into some kind of remission only after six-twelve months of continuous use, you’re reminded that you might not ever be fixed, that you might never “just accept it”.

Because of this disease, I have to be so careful in so many decision I make: the contraception I’m on but don’t need for standard reasons, how much of and what I eat, where I can go, what I can do, what I need to constantly have available to me, the type of underwear I buy, what times I can eat, what brand of plasters I buy (trust me, they are a godsend for this). It’s exhausting. I also have hypothyroidism (an under active thyroid), which apparently can feed into this. Despite the fact I take medication for that, I still suffer from the side effects. Common side effects? Gaining weight easily, and finding it very difficult to lose weight. My contraception has the same side effects, too. And I bet you can take a good ol’ guess at what can make HS worse. (Being overweight, in case you couldn’t guess.)

I am backed into a corner from all sides with this – I’m fighting a losing battle on all fronts. One thing I stand by in life is the fact that every single thing we experience is relative. Sure, you may experience something the same way as someone else, but it’s still your own experience. From pictures I’ve seen (please don’t Google this is if you don’t have a strong-ish stomach), I know that I am very, very lucky about my level of suffering compared to others. The thing is, though, that that doesn’t mean I don’t feel defeated and emotionally drained when I discover a new boil that’s appeared overnight, or when I have to contort myself in a public restroom and begin to cry because I’m trying to release the pressurised pus that’s pushing up from under my skin without a needle or knife (sorry for the super-graphic imagery, but I’m trying to get my point across, y’know?). There are some sufferers who can’t leave the house at all, and I’ve only had a a day or two in my lifetime where I’ve been unable to walk from the pain.

I’ve already adapted to this new way of life my new medication requires – no eating before 10am or after 8pm, keeping my medication drawer (yeah, a whole drawer) tidy, immediately giving myself a cat bath whenever I get a little sweaty before I begin to stink of hospitals and medication (fun new side effect of these meds), remembering to put cotton rounds on the shopping list when I nearly run out before I can forget so I can apply my topical meds more easily. And like with all the other medicines I’ve been given up to this point, I am still yet to see any improvements. But, I’ll keep you posted if a miracle happens and these work.

I know this is a very different type of post than I’ve written in the past, and it was probably something you weren’t expecting. I sometimes get into a funny mood when I have to go pick up my medication, and I haven’t been able to get out of this mood yet. It just felt right to write about it this time. Kinda therapeutic, actually. Sorry about that. I should’ve asked if you wanted to listen.

Talk to you later about more fun things, yeah?

Boo x

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