Karen’s Story: Being diagnosed with Psoriatic Arthritis
After recently taking part in our group listening support, Karen shares her story of psoriatic arthritis as part of our Wren Voices campaign.
It began in July 2019, two months after my dad died. I had cared for him since my mum passed away suddenly three years earlier. Not long after his death, I started experiencing overwhelming fatigue. While on holiday in France, one of my ankles swelled up overnight. My feet and heels became extremely painful and I struggled to walk. These symptoms came and went several times.
After multiple medical appointments, my symptoms were blamed on grief, menopause and anxiety. One GP even suggested it was all in my head. But I knew something was not right.
In December 2019, I had surgery to remove a heel spur, but it did not improve my symptoms. I decided to pay privately to see a rheumatologist. With a family history of psoriasis and clear signs of enthesitis, I was diagnosed with Psoriatic Arthritis, a progressive inflammatory autoimmune disease. I was given leaflets explaining the condition and the medications I would need once blood tests were complete, and then I was transferred to the NHS.”
“I was relieved to finally have answers, but also terrified about what this meant for my future, especially as a former top level sports player.”
Once under NHS care, my diagnosis was taken away. The consultant changed his mind, and I was left in limbo with so many unanswered questions. I had researched Psoriatic Arthritis and everything had made sense. I could not understand why the diagnosis had been withdrawn.
Over the next couple of years, my symptoms worsened. More joints became swollen and painful. Eventually, I decided to seek a second opinion from one of the top Psoriatic Arthritis specialists in the country, again paying privately. In April 2022, I was diagnosed for a second time.
“By then, my condition had deteriorated significantly. The pain was unbearable and the fatigue made everyday life a struggle. My GP had tried to help with pain medication, but the side effects affected me both physically and emotionally. I felt frightened about the future and the treatments I might need. I also felt deeply let down by several medical professionals.”
In June 2022, I reached a very low point and tried to take my own life. After three days in hospital, intensive talking therapy and the support of an experienced and compassionate rheumatology consultant, I am still here to tell my story.
The past few years have been incredibly hard. I have learned so much about myself, my autoimmune disease and different treatments. I have taken part in research at my hospital. I have searched for support and tried to do everything I can to help myself. But living with this condition is often exhausting and lonely.
“This is where the Wren Project has been a lifeline. The group sessions remind you that you are not alone. There are people who truly care and want to listen. Someone is there to acknowledge your thoughts, your struggles, your anxieties, your highlights and your achievements.”
This year, I did not send Christmas cards. Instead, I donated the money I would have spent on stamps to The Wren Project, because it is such a fantastic charity that has helped me more than I can say.
I do not know what the future holds. None of us do. I am still not on an effective treatment, but I am learning to take each day as it comes. I never know how I will feel when I wake up or how much pain I will be in.
Thank you to The Wren Project for the support you provide.
Karen shared her story with the Wren Project as part of our Wren Voices campaign. If you would like to share your experience of autoimmune disease with us, you can reach out by emailing hello@wrenproject.org.