There are a number of things, which I often want to explain to people, but don’t...
- I know I don’t ‘look sick’ and I’m glad of that but sometimes it would be easier if I did. I might have made it to work (or wherever) today but it wasn’t easy. People who know me and remark on my strength are a blessing.
- Sometimes I will turn down your invitations and it’s not because I can’t come, it’s much more complex than that. Sometimes the way I feel about myself is greatly affected by my psoriasis and psoriatic arthritis. My energy can also be in short supply, sometimes it needs reserved for the basics of life rather than going out.
- Changing my diet won’t ‘cure’ my conditions and the alterations that are known to control symptoms I have done for some time. I know you mean well but… neither will yoga.
- I’m not too young to have arthritis… I wish I was but unfortunately psoriatic arthritis is not linked to aging and the disease sometimes kicks my butt.
- Yes, I am quite warm wearing long sleeves but I prefer to cover my skin as I find it embarrassing and uncomfortable when people stare. Telling me I should ignore them doesn’t personally help me.
- Just because I’m driving or you saw me at the supermarket doesn’t mean I’m ok. I’m quite a determined person and I work through the pain in order to keep some aspects of normality.
My story
I am 35 years old, was diagnosed with psoriasis at 22 and with psoriatic arthritis at 26. I’m currently awaiting UVB treatment again for my skin to give me some respite and to be reviewed by a rheumatologist for advice and treatment.
I have always taken myself to be one of those people that just ‘gets on’ with life, yes I have my troubles with health but it has never really stopped me… or so I thought. In recent months both my psoriasis and psoriatic arthritis have flared up and most recently it has prevented me from working for the first time since diagnosis. It has been necessary to slow down and inevitably, this has given me time to reflect on life and the reality of how I am impacted by both conditions.
Psoriasis, I have discovered, impacts my daily life in ways that those without it may never understand. I subconsciously plan everything out in my head and my brain is always ticking over. Psoriasis affects the minutiae of everyday life... how I choose to wear my hair due to scalp psoriasis, the clothing choices I make to ensure the majority of it is hidden, the social activities I feel able to take part in, my confidence, my mood...the list could go on forever. I often get comments about my psoriasis not being ‘bad’ but people probably don’t realise the efforts I go to in order to, in some way, hide it from the world.
Psoriatic arthritis, in my experience, is much more than just some aches and pains in my body. For me this condition leads to severe fatigue, stiff and sore mornings and disturbed sleep to name but a few difficulties. Most recently I have begun to notice not only the physical toll but also the mental. I can be quite emotional about my skin and joints at the moment. This is new for me. This is difficult.
Due to psoriatic arthritis flare up in my hands and numerous other joints I am not able to go to my work at the moment. I have realised during these past few weeks that I might be somewhat of a workaholic. I am not good at taking time out or relaxing and I am finding myself overwhelmingly bored. Then there are the fights that I have with myself in my mind, due to the nature of my condition I have good and bad days. When I have a good day I feel guilty that
I am not at work and think I should head back…then tomorrow comes. Bad day.
All of the above being said I do firmly believe that life is still good and there are many positives to be found in everyday. It is good to have time to reflect and be real and whilst psoriasis and psoriatic arthritis do affect my life they won’t defeat me!
Submitted by a 35 old female living in Scotland