Case study: Eve Williams



Age: 37 

County: Northern Ireland


Suffering from 14, misdiagnosed at 22, diagnosed with rheumatoid arthritis at 30


Simple tasks that became impossible because of rheumatic conditions:


Washing and dressing
Playing piano
Walking

Overview


From an early age Eve wanted to be a singer, but at 14 began suffering from fatigue and neck pains. It was a further 8 years until she was finally diagnosed with rheumatoid arthritis. The condition spread, and forced Eve into giving up work completely by the age of 32. Despite this Eve was able to recommence her musical ambitions thanks to a new effective treatment.

Eve’s story: A musical dream grounded


Ever since Eve was a toddler she had dreamt of being an opera singer, but at the age of 14 she began to experience difficulties. “I started to suffer from fatigue followed by excruciating pain in my neck, a pain so severe I would sometimes black out. My doctor and physiotherapist initially said it was the result of 'bad posture' even though my neck was hot to the touch and the pain was also in my ankles. I continued to have doctor appointment and x-rays but no diagnosis was given.”

Through the ongoing pain Eve was able to complete undergraduate and postgraduate degrees, but when the pain spread to her ankles and affected her walking she made an appointment with a rheumatologist who diagnosed her with rheumatoid arthritis. “This doctor was the first person to use the word ‘arthritis’ and this was a shock – arthritis was an older person’s disease!”

Eve’s symptoms worsened despite treatment, with the pain spreading to her jaw, shoulders, elbows, right wrist, fingers, left hip, ribs and knees. Eve began working in the voluntary sector whilst still training and singing, but she was unable to keep going. “It was a troubling time and depression set in due to the physical and mental damage being done to my body. I was forced to give up work completely, and was, as one person described me, ‘retired’ at 32.” 

Living with a rheumatic disease: A continuing struggle


Eve moved away from her native Northern Ireland to Wiltshire in search of better treatment. She still continued to experience problems however. “Not long after moving, I had a massive flare and woke one morning with my leg stuck in the shape of a boomerang. Fortunately my phone was by the bed so I called the biologics nurse who was the only healthcare professional I had any contact with at that stage. She immediately sent for an ambulance as I am also diabetic and was unable to get my insulin and she arranged a bed and treated me with steroid joint injections to reduce my symptoms.”

After watching her mother care for her grandfather when he was ill Eve decided that she did not want to get involved in a serious romantic relationship, and put someone through the same experience that her mother had. “I didn’t want to be a millstone around someone’s neck, especially at such a young age. Besides, having arthritis in nearly every joint in my body made a sexual relationship a terrifying prospect because of the inevitable pain.”

Eve’s Window of Opportunity: Finding musical inspiration in the face of adversity


Eve is currently considering new career options, having been without a job for four years. With new drugs that have become available Eve has been able to take up music again. “I have used my experiences to influence my songs, from the times when I’ve felt there was no hope for the future because the pain was all consuming, to the time when there was suddenly an effective treatment and there was hope again, they all inform my lyrics. I am currently writing a song with a young girl who also has rheumatoid arthritis. She understands very well where she is on her journey and thinks the song will be good for both of us.”

Eve is sharing her story to help raise awareness of rheumatic conditions. Despite the ongoing impact on her life, Eve has been able to find inspiration, and channels this in to her music. 


The window of opportunity is key in finding the right treatment for millions of people with rheumatic conditions.


If you are inspired by Eve’s story, visit the " Take Action" section to learn about your window of opportunity to help.