Mum-of-two Jen Parker was diagnosed with ankylosing spondylitis, psoriatic arthritis and fibromyalgia at the age of 23 while travelling the world on a once-in-a-lifetime adventure. Jen is now helping raise awareness about the challenges of receiving a life-changing diagnosis while juggling parenthood and running her own business in her memoir, Unflip.
I’d always had aches and pains in my legs and back ever since I was a teenager, but it wasn’t until I was in my early twenties that my symptoms got suddenly worse. I was in Australia, and was in a lot of pain, and had swelling in my finger and thumb. Thinking I may have an infection, I went to see a GP who sent me as an emergency referral to a rheumatologist. A few tests later, and I was told that I had ankylosing spondylitis and psoriatic arthritis.
“There is no cure. You’ll have to just manage it.” My stomach lurched as my world flipped upside down.
In hindsight, I know I was fortunate to have such a quick diagnosis, but at the same time, it was such a shock. I never expected that I’d be told I had an incurable condition at such a young age, and I had no idea the impact that it would have on my life. I began treatment immediately, but my travels were essentially finished as I stayed in Australia for eight months to find a medication that would help control my inflammation and stabilise my symptoms.
When I returned to the UK, it took five months to see a rheumatologist and continue treatment.
I was experiencing painful flares and felt under a lot of stress. Around that time, I began blogging about my experience as I found it so cathartic. I also built up a following with others living with chronic conditions, which helped me come to terms with my diagnosis.
It was a love of writing that inspired me to work full-time in publishing and eventually open my own design and publishing business, Fuzzy Flamingo when I found that my symptoms meant that I could no longer manage a nine-to-five desk job.
I live with fusion in my sacroiliac and lower back joints, but keeping active helps my mobility. I make sure that I walk for 20 minutes each day with my dog, and I also have a five-year-old and a three-year-old who help keep me on my toes! I’ve also really benefited from meeting the NASS branch in Leicester and the free resources that NASS provide to help manage symptoms.
But there are still good days, and there are bad days. Being a mum and running my own business while living with the symptoms of both ankylosing spondylitis and psoriatic arthritis means that every day, I experience emotional, physical and financial challenges.
During lockdown last year, I decided to write about my experience and hopefully inspire others facing similar challenges and living with a life-altering diagnosis. My memoir, Unflip, is the book I wanted to read when I was first diagnosed. I don’t gloss over anything, but at the same time, I wanted to share the positives and that there is hope. I’m also delighted to donate £1 from every sale of each paperback to support NASS and help others living with AS.
Jen Parker’s book, Unflip, launches on World AS Day on 7 May 2022. For more information, please visit https://fuzzyflamingo.co.uk/