I hadn’t intended on sharing this here but I had such a positive response on my Instagram page and blog, I thought I would.
I’ve put this post off, firstly I didn’t really know how to position it. Secondly I had that feeling of rejection – sounds silly when I write it down. Thirdly, writing a blog, Instagram post or Tweet allows you to hide behind a screen. I try to post things as honestly as I can, sharing stories of our family, frustrations and positive moments, but there’s one thing I’ve been hiding. It’s been quite easy hiding behind the screen too, but I can’t always do this in real life.
I’ve considered posting this before but never really had the courage, which I find really odd, as I’m not afraid to voice my opinion or say things as I see then. But this, for some reason is different. As I sit here typing this I can feel myself getting anxious, my heart is starting to race, I’ve got that butterfly feeling in my stomach you get before you sit an exam. I don’t know where this surge of anxiety is coming from. I’ve been quite fortunate in that I have never really suffered with my mental health. I don’t take life too seriously, I don’t get stressed very often, I’ve never suffered with anxiety or depression. In my job I work quite closely with individuals who suffer with mental health problems and am more than aware of the support that is available, I don’t feel I need support at this time by the way, I just feel a bit shitty.
The tipping point for me was last week. This is when I realised I couldn’t keep it bottled up any longer. I posted a picture on my Instagram Story. I looked back at it and balled my eyes out, like properly balled. Like a child. Like a child who has had their favourite toy taken away. Mummy Hew was laying next to me, I think it took her by surprise, I couldn’t get my words out. I couldn’t tell her what was wrong. I found it really strange because I don’t feel like someone who particularly bottles their emotions up. I guess I’ve ignored it for so long it had to release at some point. I hadn’t really noticed how much I had bottled it. I didn’t realise I had found it so difficult to see my own reflection, to look at my own face. What the fuck is up with that?
So what am I going on about. It suddenly feels a whole lot of nothing when you start to write things down… I suffer with psoriasis which is a long lasting autoimmune disease, it sounds worse when you put it like that! Basically my skin, in some areas, replaces itself quicker than normal. Psoriasis normally appears on your knees, elbows and scalp and can be treated with a steroid ointment. For me it’s on my face and scalp. Why my face, of all places? It is impossible to hide. For me, psoriasis is less about having dry flaky patches on my face but bright red aggressive patches.
I’ve had psoriasis since I was about 15, it started in my scalp and then spread to my face. At its worst my face has been about 80% covered, at its best it’s non-existent. What’s most frustrating is that it comes and goes at it pleases. One day I can wake up and have the clearest skin in the world and the next day my face could be covered in bright red patches. For me, psoriasis is not itchy like in some cases but it is incredibly painful. You know when you burn yourself on the oven or iron and your skin gets really rough and tight, that’s what the majority of my face feels like when I have a flare up.
I’ve seen my Doctor about my flare ups, but there are limited things they can offer. I’ve used a steroid cream previously but because a steroid cream thins the skin they are reluctant to use this too often on the face. I did have a referral to see a specialist, but because my psoriasis covers less than 10% of my overall body there is nothing they can do….regardless that it’s the majority of my face.
I found it really weird getting so emotional the other day, I never have before. I feel it has probably bothered me more than I have even let myself realise.
Day to day I get on with life as normal. It doesn’t stop me doing anything. I often get a sense that people are staring and I try to ignore it. It didn’t used to bother me, well I thought it didn’t. I can be sitting on a train and feel the glare of another passenger. I can be walking down the street and see people double taking me. I can be at the checkout and the cashier avoids making eye contact with me. It can be incredibly frustrating. But I try just to ignore it and get on with what I’m doing.
It is rare that anyone has actually stopped and asked what’s up with my face. I can be in full conversation with someone, I can see them studying my face, yet they won’t ask what the issue is. Is that because people are being polite? Is it because us humans are too nervous to ask questions? I’m the opposite, if I see something I’d rather ask the person about it than ignore it and pretend it isn’t there. I guess no one has really ever actually asked why my face is the way it is when I have a flare up. And if I’m honest, I don’t know what my response would be, would I prefer people ignore it rather than talk about it?
I remember a time, I was in the kitchen at work, a colleague from the other end of the office walked in, looked at me and was quite shocked. Instead of ‘morning how are you?’ their greeting was ‘whaaaaoh! What happened to your face?’ They then panicked and scurried off out the kitchen. At the time I wasn’t bothered, but maybe I was and have just ignored it. I often joke about my appearance and the great red patches on my face – I guess it’s part of how I cope with it.
Posting on Instagram is easy, I can chose when to upload a photo. I can use photos from previous days or weeks when my face wasn’t so covered. I can use filters, although I try not to – I don’t think it really hides anything anyway. But why should I? What is it that I have become afraid of? I walk down there street everyday, I walk into different offices, meeting new people everyday and I don’t think twice about it. At least I didn’t think I did. When I posted that picture on my Insta Story I don’t know why I got so emotional. I guess part of it was that when I looked back at it, I didn’t recognise the person I saw. I somehow block out that the person I am is a person who’s face is often covered in bright red patches. I posted the picture without really looking at it, I guess it’s when I looked back I had this sudden panic that I had posted it. I’ve just scrolled though my photos. I literally have a handful of photos where you can see my psoriasis (note; I’ve got over 3000 on my phone, yet only 5/6 of my face when I’ve had a flare up). Maybe I have subconsciously deleted these or avoided having photos taken at a time I’ve had a flare up.
Psoriasis for me, can be triggered by a number of things: either too much wheat/gluten or dairy in my diet, stress, changes in the weather or just because it bloody feels like it. Stress can often cause a flare up in a lot of people, for me I get stressed once it has flared up, rather than the stress causing it. It becomes a bit of a vicious circle, once it’s there and I get stressed about it, it feeds off the stress and then won’t sod off.
The current flare up I’ve got started about a week ago, for no apparent reason. I wasn’t stressed, I hadn’t over indulged in wheat, gluten or dairy, it just appeared. And now it won’t sod off. I would say I’m at the later end of the flare up now, so hopefully it will pass is a few days.
I’m not really sure what I was hoping to achieve by writing this post. I don’t feel any better for writing it but I also don’t feel any worse. I keep trying to tell myself I’m not bothered by it, but maybe I am. Maybe it is making me more anxious than I want to admit. I’ll just bottle it back up, I preferred it kept in there…