Reflections on my life with RA, this World Arthritis Day

Blog by Ailsa Bosworth MBE, NRAS Founder and National Patient Champion

The theme for this World Arthritis Day, 12th October, 2023 is ‘Living with a Rheumatic & Musculoskeletal Disease at all stages of life’. At age 74 I’ve lived a long time and 43 years of that life have been spent with my unwelcome companion Sero-negative Rheumatoid Arthritis. 

My father had ankylosing spondylitis from before I was born, and this had a massive effect on his life and that of my mother. He died at age 62 from a combination of the disease and the drugs – at that time cortico-steroids were the mainstay of treatment. Fortunately, we now know so much more about the damage these drugs can do, taken long term. In some ways I’m glad that Dad wasn’t around when I was diagnosed because I think it would have devastated him to see me living with inflammatory arthritis. The effect on my poor mother was utter dismay that now her daughter had this awful disease.

Of course, I knew a lot less about RA when diagnosed than I do now, and whilst it started in my right knee, after my daughter Anna was born in 1982, it migrated rapidly to the rest of me. I had my first operation when Anna was 9 months old – a synovectomy. Looking after a young baby and hobbling around on crutches for 6 weeks didn’t go well together and when it hit my other knee, hands and wrists, changing nappies became a challenge I managed to master by flipping her over from her front to her back using the plastic tie pants that went over the terry nappies! She didn’t seem to mind being flipped over like a pancake! 

There followed years of swollen knees and elbows that I couldn’t straighten which had to be aspirated so many times; hand splints, wrist splints, leg splints, neck collars, resting splints, working splints. My left ankle developed a valgus drift early on as you can just see in the photo, and I was hospitalised for bed rest on many occasions and put onto an infusion of steroid just to calm things down. It seems like another world now, looking back, because none of the standard disease modifying drugs worked for me. I have what is known in medical terms as ‘refractory disease’, which basically means that few drugs have any impact.

I am fortunate that I had a wonderful and supportive boss during these early career building years, and I never had a problem having to get time off to attend so many medical appointments. I worked incredibly hard as a consequence. When you have a long-term condition like RA, you feel you have something to prove – I’m sure this is a feeling which will resonate with others affected by chronic disease. I became a Director of my boss’s machine tool company and life went on, interrupted every year or two by yet more surgery. The destructive nature of RA when inadequately controlled is progressive and gradually I acquired more and more metalwork in my body. 

I have always worked and was in the fortunate position to get a nanny initially when Anna was a tiny baby and I went back to work when she was 3 months old. Then as she grew a bit older, mother’s helps and au-pairs became part of our lives. I couldn’t work and do everything else, so help was essential. I think it was a hard time both physically and emotionally as I couldn’t do all the things I wanted to with Anna because of the RA, and this affected me emotionally and mentally. I was also gradually having to give up things like sports and hobbies and come to terms with having to consider applying for a Blue Badge. I really struggled with that because I couldn’t accept that in my thirties I was being labelled as ‘disabled’.

The advent of biologics in the late 90’s/early 2000s revolutionised rheumatology and me! I managed to get onto a clinical trial of one of the early Anti-TNFs in 2000, and this was the first drug after nearly 20 years of aggressive disease that actually worked for me, apart from the dreaded steroids. It was effective really quickly and after years I could see a glimmer of an improved quality of life. This experience led ultimately to me starting NRAS in 2001. I had no clue that in my early 50’s I would be changing career and starting a charity. Anna was off to university and a new chapter of my life was opening up, quite unexpectedly.

Work has always been an important part of my life and often gets prioritised over other also important things – like family and social life! (Don’t ever come to me for advice on work/life balance!!) However, starting NRAS was a completely different experience. Having previously worked in very male dominated industries such as engineering, computers and audio visual, where the fact that I wasn’t an engineer or programmer was no longer limiting what I could do, this opened up exciting new possibilities and opportunities.

Whilst I instinctively knew there was a real need for people like me to have a dedicated voice in the UK, based on my own experience of having to work out myself how to deal with this disease over many years with no support (apart from my family), I had no idea how great that need actually was. NRAS grew fairly rapidly after the first 2-3 years’ getting established.  We moved into our first office in 2004 and grew some more. I was learning so much talking to rheumatology teams and people with RA across the UK. My disease progressed, I had more operations, developed uveitis, NRAS grew some more, and in 2013 we moved to bigger offices. By now Anna had a partner and my first granddaughter was born in January 2014. 

I now had to face another emotional challenge, the overwhelming feeling of guilt and sadness that I wouldn’t be physically capable of helping my daughter with my granddaughter in the way that most grandmothers are able to do. This disease really does impact you in different ways depending on where you are in your life. Alba is now 8 and Luna is 4. It was easier to look after them and play with them once they were walking, talking and being a little bit independent, but even though you compensate in different ways for the fact that you can’t pick them up, throw them about and get down on the floor to do stuff with them, you love them just as fiercely.

Looking back on the different stages of my life, the fact that I live with RA has had a huge number of benefits that I wouldn’t have had without it. I think it has made me a more tolerant and more empathic individual than I might have been, it has certainly made my wonderful and supportive family more understanding and considerate of invisible disability. Adversity has made me stronger and more resilient, and I think that developing resilience is a very important component for dealing with life in the 21st century. Working for NRAS has been and continues to be a massive part of my life which has enriched me, educated me, humbled me and has been a real honour and I would not have wanted to miss any of that.

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