Wednesday, 24 October 2018

The Emotional Burden of Psoriasis

Think you know psoriasis? It's much more than a skin condition. It actually affects your mental health quite a bit, too. Take it from me. 


Today I burst into tears in the pharmacy, and the poor lady at the counter just stared at me like I was an alien. I feel like such an idiot.

Let me back up a little bit. Here's what happened. 




I've finally decided I've had enough of my psoriasis, which still affects about a quarter of my scalp, despite lots of lifestyle and diet changes, CBT therapy and stress reduction. I repeat positive mantras all flipping day. I meditate twice a day. I don't respond to people who are bitchy to stand my ground, I just let it all go, for the sake of my stress levels and mental health. I massage olive oil and coconut oil into my scalp at night, and sleep on an old towel wrapped around an old pillow. It helps - for a while, and then, eventually, life hits you sideways and then it comes back as tight, painful and itchy as ever. You can reduce the stress that's going on around you, but I haven't found a way still not to react to in a stressful way. You might also remember that I decided I would try and forget about having psoriasis at all, and stop Googling solutions because I thought it was adding to the stress. Yep, I was caught in a cycle of being stressed about a disease that's most likely caused by stress. 

How about that? 

The flakes stop for a bit, then come back and at their worst, they're totally unmanageable.  A month ago, I was getting happy butterflies in my tummy because it finally seemed to be easing, like the best it's ever been in my life. Now, I'm showered in big, thick white flakes that stick in my hair and fall onto my shoulders. It burns. It itches. I am SO done with it. 

I finally decided to go to the doctor's yesterday and ask for some prescription lotion to try and get me through the worst of this particular flare, as it just wasn't calming down, as it usually does. She agreed it was now 'localised' (music to my ears after 5 years fighting it naturally) and prescribed me a scalp lotion that would take the edge off. I walked to the pharmacy around the corner and handed in my prescription, to be told they just gave out their last two bottles and can I come in tomorrow as they would order it in for me. So I returned again the next day (it's a 30-minute walk there and 30 minutes back), hopeful for my flake-free scalp in sight, to now be told that sorry but there's a manufacturer problem and they'll have to just 'let me know' when it's available again. No other time frame than that. They'll let me know. And that would have to do.

Looking at it, I think I had built this moment up to more than it was - this break from the pain and burning and constant itching. And now it was gone again. 

My eyes prickled and welled up with silent tears, and really, I don't even know why. The lady at the counter just stood there, with a puzzled look on her face, as if to say: 'it's only skin lotion, dear'. 

I like to think of our stress as a bucket that we fill up with all the crap that happens during the day. Well, today by 12pm, mine was overflowing. 

The mental and emotional burden of psoriasis is something that people need to know more about. 

Forget the cosmetic aspect - that you never feel like you can step out looking your best with huge flakes flittering down onto your shoulders and whipping about in the breeze while someone tries to stand in front of you and talk to you, while they bat them away with their hand, wondering what they are. Once a little girl leaned over to me on the bus and asked me how I got all that sugar in my hair. I try not to stand in queues - there's a person behind you staring into the back of your head. In the past, I planned my social life around my psoriasis - what I wear, what I do, whether or not I go to a certain event or not. I've had to quietly and politely ignore grimaces made by some hairdressers to each other as they comb my hair to cut it, and pick flakes out of my hair with a flourish. When I had psoriasis on my arms and knees, I could wear long sleeves or trousers, even though yes, the itch was annoying. But on your scalp, you can't hide it. Well, you can - you can wear a hat - but in hot summer, or to a black tie event? It's no wonder that psoriasis has been known to affect your self esteem.

But even if you forget all that - imagine living with a patch of skin, that covers about a quarter of your scalp, that feels as if someone's just lit it up with a flame and then extinguished it. It's bright red, sore and the intensely itchy. The skin on the scalp is really tight, so you can feel it pull when you move your jaw or your eyebrows. It burns all the time, and it itches and hurts all day and all night. I've had it for 25 years. Imagine how you would feel after all that time. It wears you down, which is why I've asked the doctor now for a break from it. That lotion was my hope of ridding the flakes, just for a while. 

And my little moment in the pharmacy might not have been over-dramatic, when you consider the evidence. 

Studies have shown that psoriasis brings with it a higher rate of suicide contemplation, depression and anxiety than experienced by most people. A later study was more pessimistic about the link between psoriasis and suicide, but admitted it did lead to higher self-harm. 

I don't doubt that a portion of this emotional turmoil is related to what happens naturally in the body when it's inflamed, or hormonal fluctuations. But a great deal of that can come from social expectations too, and as a result of just living with this condition day and night. 

If you know someone with psoriasis, and you notice that they seem a bit grumpier than usual, please be gentle with them and give them a break. It's not just what you see on the outside. And psoriasis is way much more than just a rash on your skin. 

Maybe, like me, they've just filled their bucket up for the day. 

Can you relate to this? Do you suffer with psoriasis or have a loved one that does? Do you think it can affect your emotions? Let me know what you think in the comments below... 

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2 comments:

  1. I've had psoriasis for 10 years now. My psoriasis began my freshman year of high school, what a time to be alive. With already low self esteem, I had to learn how to navigate this new skin issue and what people had thought of the flakes sitting around my desk in class. My psoriasis has dominated my legs, arms, belly, basically everywhere but my face and hands. To this day, I have psoriasis on my stomach, arms, shins, scalp, and now my neck and face. This constant battle of trying to stay mentally strong and constantly fighting back tears has been a devastating turn of events in my life. Some days I come out strong, but other days I wind up in a cold shower with tears rolling down my eyes wondering what I'm doing wrong.

    This skin condition is so much more than a skin condition. If you don't already have people around you that love and care for you and support you, or even someone to tell you you're beautiful on days when you feel like an absolute wreck, it gets hard.

    Thank you for sharing your experiences. Some days I forget that I am not battling alone.

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    1. Ah, Cassie! Yes it is much more than a skin condition, I totally can relate to your experiences. It's good to know we're not all alone, and that the emotional side of psoriasis is really a part of it. Thank you for sharing your experiences, too. Hope you find relief from psoriasis soon.

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