"I could see my body changing, and I could feel it: life with psoriatic arthritis"05 June 2020
Sara, 29, has psoriatic arthritis and has had psoriasis since she was six. Being able to share her experiences with her sister and father, who also have autoimmune conditions was the inspiration to get her life back after her diagnosis when she was 20.
"It was hard hearing about the arthritis."
I was diagnosed with psoriasis when I was six and psoriatic arthritis when I was 20. It took a year to get the diagnosis.
My dad has the same condition and one of my sisters has lupus, so the rheumatologist knew me and knew almost right away that I have psoriatic arthritis.
I don’t know myself without psoriasis. My skin was always cutting and getting infected. I’ve only ever had a few years where the psoriasis has been quite clear. But it was hard hearing about the arthritis. I could see my body changing, and I could feel it. Being in pain all the time is the hardest part, but you almost get used to it. You feel fatigued, too.
"I went from being healthy to being like an old woman."
I started making up excuses about going out, I lost a lot of friends. People didn’t understand. They thought I was putting it on and would say: “At your age?!”
I had to stop working at one point and cut back on hours. It was horrible what work put me through – asking so many questions whenever I had to take time off. I went through a hard time mentally. My life changed overnight. I went from being healthy to being like an old woman.
"I thought I’d try to find work, something that worked for me."
I’ve always been interested in beauty and makeup, so I tried it out. I did an apprenticeship for a few months. Then I took more courses at college. I really enjoyed it and started up a business, mobile spray tanning at people’s houses.
Now I run my own business out of a salon. I rent a room to do my treatments, specialising in lash treatment. I do it on my own time, so I can stop if I’m having a flare up or feel unwell. I’m my own boss. My clients are all very understanding and I’m very open about it, you have to be. I got my life back.
I almost let arthritis take over my life. Doing what I’ve done has freed me from that, and from the struggle that employers have put me through in the past.
Three of us have been diagnosed with autoimmune conditions
One of my sisters has lupus. After learning what it’s like to be sore all the time and constantly tired, I can better understand what she’s been going through. It was nice being able to talk to her about how she’s been feeling over all those years.
My dad’s very laid back about it all. He just gets on with things. Whereas I talk about the emotional aspect of my condition more often.
My sister’s lupus has stopped her from doing things before, but she’s made it through, and that inspired me to be the same, to work through it and not feel sorry for myself. But seeing my sister manage two daughters gives me hope, she’s a lot worse than I am. If she can do it, I can.
We sometimes joke about it all, it’s laughable when we’re all sitting together and everyone’s moaning.
We’re a close family of six and all understand what’s going on, if I need help they’re always there. I feel very lucky. I met someone three years ago and he’s also been great since day one. He would do anything for me.
"Anyone can have this illness - no matter your age."
Young people are usually only considered disabled if they’re in a wheelchair. I talk about this a lot with people, like my clients and friends.
I want to share my story so I can show people in the same situation that life doesn’t need to be over and help is out there if you want it. I also want to show that anyone can have this illness no matter your age – that’s probably the biggest thing for me.
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