Case study: Jenny P's story
Diagnosed with rheumatoid arthritis at 28
Simple tasks that became impossible because of rheumatic conditions:
- • Preparing dinner
- • Washing up
- • Getting dressed
While pursuing a career as an event organiser and taking on several jobs Jenny started to experience symptoms of rheumatoid arthritis, although at the time she didn’t know the cause. It was more than a year later when Jenny was diagnosed. Whilst having to adapt to manage the impact of the condition of her life and career goals, Jenny has a positive approach to making the most of her life.
Jenny’s story: an outgoing life changed
In 2011 Jenny (then aged 27) was working towards her dream career of being an event organiser for a charity by taking on an internship, plus paid and voluntary work around her full time job. She also sang in a choir, and took part in various competitions and performances. However she began to experience a range of distressing symptoms. “It started in the February that year by getting blisters on the joints of my fingers that left me with pain and swollen hands. It happened several times during that year. I also started to get really tired and achy all over and not able to get out of bed some days, but put I this down to being so busy with the various commitments I had. It wasn’t until November after getting back from a choir trip to Disneyland Paris and not being able to get out of bed for a week that I got referred to a rheumatologist.”
Jenny had to wait until February 2012 to see a rheumatologist, but through her own research suspected that she may have had rheumatoid arthritis as her symptoms continued. “I had to cut my hair short as I could no longer brush it or tie it up. My boyfriend had to help me wash and get dressed which was really hard to accept. I had to leave the choir as couldn’t make the rehearsals and was due to return to one of my paid jobs within the charity sector but my manager had to let me go as she felt I wasn’t able to do the job. That was when I realised how seriously ill I was.”
When Jenny finally saw a rheumatologist he referred her for an ultrasound despite Jenny’s young age. “That April I had the scans which proved I had rheumatoid arthritis. The ultra sound technician kept checking how old I was, as he couldn’t believe the damage he was seeing. I felt relieved by then that something had finally been found, but had to wait another month to see the rheumatologist.”
Living with a rheumatic disease: Trying to battle on
Jenny has tried to continue her life as she would have before, but has had to learn to adapt to her condition. “It’s taken time to understand rheumatoid arthritis, I’m always in pain and have accepted that, but can also recognise when the pain is more than normal and am able to ease it.. As for the tiredness side, I now know that doing lots of activities together isn’t good for me so I try to pace housework and the little social life I have. I used to be a very impulsive person so I’ve learnt to try and plan if I have an outing one day I try to rest the day before, as I get tired very quickly. Like most girls I loved a good shopping trip, but now I’m lucky if I can manage two hours.” I don’t really have any hobbies now either, as my main ones were baking and craft, which are difficult to do with continuously painful hands.
Jenny has been able to keep working, but has had to make sure that she does not have any days off sick as they are unpaid and had to make use of the access to work scheme. At home Jenny has made small changes to make her life easier as she likes doing things for herself. “Around the home I got a smaller kettle so I can make my own drinks if needed, an electric can opener and various other aid tools. I’m also very stubborn and don’t like people doing things for me! Friends and family have been very supportive, even if most don’t really understand the condition as sometimes its hard to understand as rheumatoid arthritis isn’t a visable illness”
Jenny’s window of opportunity: continuing to live life
Jenny has taken positive steps in her life since being diagnosed with rheumatoid arthritis last year. She is still able to work, and whilst the workload may still slow her down, she is in no mood to stop. “I started a new voluntary role this year organising an Oxjam takeover music festival, which raises money and awareness for Oxfam UK. I’ve found the work load far more tiring than if I had done it two years previous. But this is how my life is now; and I have a positive outlook on the future”
Jenny is sharing her story to help raise awareness of rheumatic conditions because she wants to help people understand what rheumatoid arthritis is and that it can happen at any age.
The window of opportunity is key in finding the right treatment for millions of people with rheumatic conditions.
*If you are inspired by Jenny’s story, visit the "Take action" section to learn about your window of opportunity to help.