What It’s REALLY Like to Have Psoriasis
From “snow” to sleep troubles, Skin to live in writer Simon shares what life with psoriasis is really like.
Simon is one of our newest Skin to live in writers. He hails from England, and has been living with psoriasis for most of his adult life. He is passionate about food, music and also has his own psoriasis blog, which you can see here.
If you are living with psoriasis, you may have heard someone say to you, “I know how you must feel.” Truthfully, they probably don’t know, and what they reallymeant to say was, “I can only imagine how you must feel.”
I understand that it may be difficult to empathize with people living with psoriasis, but I thought it would be interesting to share - with friends, family and whomever else - what it is REALLY like to have this disease. So, feel free to send this to those who are wondering what it’s like - it should give them a good idea of what some of us go through:
How about a sunburn?
Let’s start with the itch. Ever wondered what a psoriasis itch really feels like? You know when your skin peels after a sunburn and becomes increasingly itchy? Once you scratch it, you have that ‘Ahhh’ moment when the itchy skin is removed. Feels soothing, right? Well, when people with psoriasis experience flaky skin, that feeling of relief after scratching is similar but only intensified – in fact, it’s why some of us itch when we shouldn’t. There is nothing quite like that feeling of peeling a flake of skin. I’m not suggesting you go out and get a sunburn to experience this, but you get the idea, right?
What about a bug bite?
Let’s try another: I sometimes compare my itch to a mosquito bite. We’ve all had squirmy mosquitos place themselves on our skin and leave annoying red bumps and itchy skin. That’s another way to describe the itch. When you scratch, it seems to temporarily go away, and when you stop scratching, the itch begins again.
Now, imagine one of those types of itches every hour of almost every day.
The feeling is there when you wake up, and it’s there when you go to sleep. It often feels like a never-ending itch and some of us are not great at resisting the urge to scratch (including me). To add to that, just because psoriasis can be an unkind creature, it can even itch when your skin appears to be clearing.
Trying to catch some Zzz’s
A good night’s sleep for those living with psoriasis can be rare, or it is for me at least. Yes, the itching often keeps me up all night, but there’s more to it. It’s the amount of flakes that accumulate in my bed. I can spend countless hours cleaning my bed, brushing or vacuuming up the dead skin cells. If you’re curious to know what it’s like, grab a bag of chips, crunch them up, and throw them all over your bed. Then see how tough it is to fall asleep. While chips may be good for a midnight snack, skin flakes are not, especially when you desperately want some shut-eye.
Is it snowing in here?
The skin that ultimately flakes off is often dry and quite hard. If you’re experiencing a flare-up, you may find yourself just peeling without scratching, and white skin flakes dropping around you like snowflakes. Try to imagine having a conversation with someone and, as you breathe, a piece of skin flies from your nose right in front of them. Or, imagine being in someone’s house and looking down at their nice dark navy carpet and spotting those white flakes all around your feet. I’m sure your host didn’t know it could snow inside!
Looking on the bright side
I hope this has given you some insight on what people living with psoriasis can go through. However, please don’t take this in distaste! We know that when you are asking us how we feel, it’s because you genuinely care. We really don’t expect you to understand what it’s like to have psoriasis – but we often need you to understand why we may be tired, irritable, anxious…or flaky.
If anything, I want this to be a window into our world, and create some awareness about psoriasis. The more people that understand what we go through, the more support we may get.
And, if you live with psoriasis and thought the above sounded all too familiar, it may be time to talk to your doctor about a new plan for your skin. It can be easy to become complacent, but you deserve better. So, keep pushing and ask for more - it’s time to put those flakes to bed! Well, not like the above, of course.