“A lot of people have never heard of psoriatic arthritis”

26 November 2021
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I’m Louise and I was diagnosed with psoriatic arthritis (PsA) in my 20s. I’m 41 now, working for the NHS and a mum to six-year-old twins.

“I’ve had psoriasis since I was four.”

My mum had to battle with my GP until I was referred to the dermatology department at Salford Royal Hospital in my late teens.

The team there are fantastic and do a screening questionnaire at each appointment to identify any signs of psoriatic arthritis at an early stage.

I’ve read many stories of people who’ve had to battle to have their symptoms taken seriously. When I was 26, I was referred to a rheumatologist for an assessment and shortly after I got my PsA diagnosis.

“It became a bit of a standing joke with my friends.”

We’d have our regular girls' night in with a few drinks and every time I stood up, my leg would almost give way because of the pain in my right hip.

I didn’t take it too seriously at first, however over time the joint pain became more persistent and in more areas. Once the fatigue set in, I knew there must be more to it.

“Looking back, I didn’t fully understand the significance of my diagnosis.”

I was relieved that I’d found out it was ‘something’. I did feel I was too young for an arthritis diagnosis, and I didn’t appreciate how it would affect me.

By the time I was in my mid-20s, I was single, starting my career and spending my spare time socialising with friends. I thought nothing would need to change!

The rheumatology nurses gave me some literature about arthritis, and for the rest I relied on ‘Dr Google’. In recent years I’ve used Instagram to connect with others.

At the time, if I could’ve read personal stories of how people in a similar to me had coped, I’d have been so grateful.

“My psoriatic arthritis changes from week to week!”

When I was pregnant with my children, my psoriatic arthritis seemed to go into remission. I had more energy, less pain, and felt generally ‘healthier’.

Within three months post-birth, things had dramatically declined, and it’s been extremely difficult during the last six years to keep my psoriatic arthritis under control.

My life has changed significantly. I can’t do many of the things I used to without a hell of a lot of planning. It’s impossible to guess what my pain will be like from one day to the next.

I met my now husband when things were relatively stable. He’s had to ride the highs and (very) lows with me. He’s been and continues to be an amazing support.

“My job means an awful lot to me.”

I work in a hospital as a highly specialist podiatrist and I manage pretty well. My closest work colleagues are now adept at spotting when I’m struggling and are always there to assist.

The twins are an absolute whirlwind, so home life is busy. There are times when I push myself too far and it can take a few days to recover. I put a brave face on for the kids and try not to let them see. Although they’re fascinated by the number of tablets and injections I have to take!

It’s not all doom and gloom - we get out when I’m feeling at my best and have some amazing days out as a family.

“There’s often not the chance to ‘take a day off’ when extreme fatigue or pain hits.”

Taking time out is something I really struggle with, especially with having children. Even though I know the only way to get over flares is to completely rest.

It’s one thing that causes arguments at home as my husband is always pressing me to take it easy.

I do feel better when I can take regular gentle exercise, like swimming or walking.

Also, I keep a list of things we can do as a family or a couple, so we make the most of them when I feel like the old me. That keeps me going!

“I find it difficult to talk about what I’m going through.”

I can’t explain how it feels when I have a flare. How on some days I can’t even turn over in bed or get out of a chair. How can people who’ve watched me dancing on tables in bars understand this, when I try to explain my arthritis to them?

No-one really gets it or knows what to say, so I change the subject. I tend to mask it and put on a brave face. That needs to change, and I want to have more open discussions and raise the profile of psoriatic arthritis. That’s why I wanted to share my story.

“I feel strongly that mental and emotional support for people with chronic health conditions is severely lacking.”

I’m very lucky that I have a strong network of family support but not everyone is that fortunate. There have been some very dark times that it can be hard to see your way out of.

Without a doubt my biggest support is my husband Benn. He takes it all in his stride and kicking my ass with positivity to motivate me. My family are also a great support, we’re very close and I’m lucky to have them.

“It’s a miracle if anyone has even heard of psoriatic arthritis.”

I find 95% of people have no idea about what the impact of psoriatic arthritis is on an individual.

The fatigue, the pain, the impact on quality of life. The fact that it’s degenerative, that there is no cure, and that to even find the right regime of treatment to manage symptoms is a challenge.

“If you have just been diagnosed with psoriatic arthritis...”

  • Ask questions and accept all offers of help and support.
  • Don’t be disheartened - with the right treatment you can still live your life to the full.
  • Know your worth - don’t be dismissed by doctors or consultants: you know your body better than anybody.
  • Everyone responds differently so what works for one person may not work for the next, make sure you fight your corner.

We’re here whenever you need us.

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