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Living with a Lifelong Condition


I've been oohing and ahhing about doing this post for a little while now. Mostly because I'm embarrassed and feel ridiculously paranoid about it. But, I think it's something I have to openly talk about, especially now I'm on medication and have finally found the help that I need!



I suffer badly (stage 2) from Hidradenitis Suppurativa or HS. It's often a condition that is mistaken for acne, and whilst I do suffer mildly from that as well, it's never been a massive issue (well, I could live with it!). It's basically where the sweat glands get inflamed and end up resulting in absesses, cysts and what look to be boils on the skin. They discharge pus often and look absolutely revolting.
I've been suffering with them for years (nearly 8 to be percise!) and just didn't know what it was about, I went to the doctors many a times and they just gave me antibiotics. 2 weeks of flucloxacillin (makes me feel so sick and ill in the process) made no difference and after trying this several times, I gave up. I decided this was my life and I shall continue to live with it the best that I can.. But I hated it. It made me self-conscious. It made me check my clothing a hundred times and I always was aware of what outfits to buy. I felt, well I should say feel as I'm still living with it. It's painful when it's inflamed and is a highly frustrating condition.
I made the decision that I wasn't going to deal with it anymore and went on to book an appointment at the doctors. The GP was disgusted that I hadn't been transferred to Dermatology for treatment - to be honest, so was I! But, eh, 2 months later I got an appointment through to attend. 16th September. But I didn't start taking the medication until 16th October. The day my life was finally changing!

I'm finally starting to feel a little positive.

I'm positive that change is on its way and that now I'm visiting Dermatology monthly, I know it shall be dealt with properly until my journey is over. However, there's no cure for it. It's something that they can make "dormant" but I shall have it forever. The scars will forever be there, and to be honest, I'll probably always be paranoid about it.


Now that I'm getting treated, I'm pretty happy that something is being done. But I'm not so happy with the pills. I have to take Isotretinoin (95mg) daily. It's not so much the "taking" of the pills as it is the side effects - it's designed to reduce the oil production in your body - therefore making you dry out (to stop the cycle and beginning of new spots/abscesses). You're not allowed to drink alcohol more than 2 units a week (I don't have issues with this), you have to be on at least 2 forms of contraception as you must not get pregnant (causes severe deformities to baby) but this isn't an issue as we've got Noah and aren't planning another anytime soon! Along with a high risk of frequent nosebleeds, easily get sunburnt and can cause muscle pain.
My lips get dried out and I have to regularly add lip balm. My nostrils get dried out and then they become incredibly itchy meaning I have to apply Vaseline to them.  My chin and face is suffering very from badly this. Yup, not fair at all. I can't hide my face up. It honestly has made my face look so awful - I naturally suffer from redness, so to add super dryness to it (argh!).
I have been using "oil free" moisterisers to help with the dryness and it has a little, but it just makes me look so shiny.. on top of being red. As my face is shedding my skin, it's making my face feel so sore.

The photos above is showing what products I'm using now, I've have to swapped over onto "oil-free" brands as it'd be pointless to be using products with oil in if you're taking medication to reduce it. But you don't notice how many products have them when you're looking for some without! I got some shower gel, oil free moisteriser, oil free face wash and some moisture max lip balm. I'm so surprised how easily I've swapped over to these products. They smell gorgeous and apply lovely, I've become super attached to my lip balm as I'm noticing I'm applying it very often!


Apologies for my "grumpy" looking faces - I was feeling highly sensitive at the time of taking the photos haha!

Trying to put make up on to hide my redness and shinyness makes me look ghastly. I genuinely look like I'm wearing a Halloween mask. I actually noticed this for the first time in Blackpool.
Everyone had left the room and I looked in the mirror for the first time that day and I saw myself. I looked so hideous. I started crying because I simply didn't know what to do to make myself feel better about it, I took my make up off and just applied moisteriser, but I still knew I looked horrible, but what else could I do?

I've never been one to be vain at all. I know I'm not super good looking, hell I'm far from it! But I have always had that inner confidence that I know I can make myself look decent when I put the effort in. Make up has always been my salvation. I don't tend to wear much on a daily basis, or any at all if I'm at home all day, but I don't like to be in public unless I feel comfortable.
I don't feel confident in the way I look without make up. Certainly not at the moment as I look shiny, red and dried up. It makes me feel so grateful that it's not forever. (currently planned for 16 weeks - but may be more if it's not cleared up (most likely shall)). It also made me realise how I'd feel and act if anything happened permanently to my face. I wouldn't deal with it well, obviously I would have to try if it came to it but my heart genuinely goes out to them people who do suffer with it on a daily basis.
The face is pretty much everything to a person. It's the first thing you notice when you look at someone. Whatever you do you won't be able to hide up your face, it's not easily covered and you can't mask something that's clearly there. Everyone looks at your face, whether you want them to or not. It is shallow to base anyone on the way that they look, but it happens. I've definitely become a person in life that never judges before I know. I never "laugh" at the disabled or the way that anyone looks, because I know exactly how it feels to be in that position. I'm Deaf - why would I find it amusing that there's another disabled person doing something "funny"? I'm in no position, nor is anyone else. No-one has the right to do that really.

I am very aware of this fact as it's hitting home to me right now. I've always had that mindset, but now it's actually happening to me, I'm noticing it more!

But I'm on treatment now and I'm looking forward to seeing the end results. This is only the start of my journey and I need to share it as it's a big life event for me, and for Chris to be honest. He's been amazing regarding all of this rubbish. He's been there and he still doesn't think I'm the most disgusting person on the planet. YAY! It genuinely takes a special person to go beyond the exterior and quite frankly not to be horrified by the way I look. He'd say it's really not that bad, but it is. Let's just hope it brings back my body confidence too!