- Location Flintshire
- Type of Arthritis Juvenile idiopathic arthritis
- Date of Birth 1967
- Age at Diagnosis 13
Lorraine was diagnosed with juvenile idiopathic arthritis at the age of 13. 37 years later, she volunteers with an Arthritis Care support group she set up in Wales. She tells her story.
The limitations of having arthritis as a child
I started experiencing the symptoms of JIA at the age of 12; I was diagnosed at 13 and spent over a year in hospital. I turn 50 this year.
I found the time spent in hospital really challenging, and didn’t really understand what was happening at the time. I went through periods of sadness where I would cry because I really missed home. Friends, family and teachers would visit, but the hospital wasn’t close to home. No one explained anything to me at the time, and there was no emotional support available. The pain was not the hardest thing to come to terms with, the limitation of JIA and what my body would not allow me to do was!
I really missed being at home. Before the diagnosis, I had been a runner for my school, and had dreams of one day running in the Olympics. I had a hard time adjusting to this new reality and only began to accept it when I was about 30.
On bad days, I feel frustrated, but try to maintain a positive attitude to life with arthritis. Some days, my body won’t let me do the things I want which does make me feel frustrated.
Lorraine's passion for helping others with arthritis
I volunteer for Arthritis Care, and was passionate about Arthritis Care setting up a support group for young people in Wales. I have gone on to set up a group for people with chronic pain. I was a social worker by profession, and eventually had to go part time, due to my arthritis. I am passionate about helping younger people with arthritis, and know how helpful both emotionally and psychologically it would have been to have that support myself.
I started a support group for a mixed age group people because, when I first started looking for support after moving to Wales, the only group I came across was full of elderly people and I couldn’t really relate to them other than through their common pain complaints. When I started a group for younger people, I was surprised to hear that prior to the group being formed, many of them went to Mind, the mental health charity, for emotional support.
Support at home
I consider myself lucky that I have a good relationship with the two long-term rheumatologists I have worked with – even going to one of their daughter’s weddings! I know it’s not the same for everyone, though.
I had a husband (I'm now newly divorced and happy with a new chap) and a daughter. When my daughter was young, they managed fine. I would help my daughter with academic work, and my husband would help out with the more physical activities. However, it got more difficult when my daughter entered her teens, as she wanted to help care for me. I was adamant she would have a normal childhood and not be a carer.
We wouldn't be able to support so many people with arthritis without people like Lorraine giving up their time and contageous energy to groups around the UK. If you'd like to volunteer, why not have a look at some of the opportunities we currently have on offer?