Jayney Goddard - Edgar Stene Prize entry 2017
“Time is joint - Joints over time” “Early diagnosis and access to care in rheumatic and musculoskeletal diseases (RMDs) - the ideal world and the reality - my personal story”
I am certain that an earlier diagnosis would have made all the difference in the world to me – however I also appreciate that this was difficult for the doctors as my first symptoms presented 23 years ago – so there were fewer tests available then. Also, there was the confounding matter of my being a ballerina – so aches and pains were not unexpected.
I have survived the very worst that Rheumatic Disease can bring and I am now in full remission – and this gives me the freedom and ability to act as a patient advocate – for both doctors and sufferers, highlighting the need for education, recognition, early diagnosis and treatment of these devastating conditions.
Here is my story...
Knees pulled up tight, ‘derrière’ tucked under, core engaged and arms, neck, shoulders and head loose – looking elegant and above all, effortless. I looked into the full length mirror and all was in perfect alignment. My body, that I had honed over the years, was looking right – for once. Ballerinas are their own worst critics.
The piano struck a chord and on the first count, I began my initial pliéof the day, knees bending softly - easing into the rhythm of the ballet class, the exercises beginning gently, and becoming more intense as muscles, tendons and joints all loosened and began, one by one to join the dance.
Today was different though, I noticed that my Achilles tendons were stiff. I instantly dismissed this niggling discomfort – ballet dancers are quite used to living with aches and pains – we just ‘get on with it’. As I warmed up, the pain subsided and I made a mental note to get it checked out anyway. Of course, I forgot and it wasn’t until a few days later, when the morning pain just kept coming back that I went to the doctor. She told me that it was ‘only tendonitis’ and to be anticipated at my age – a 30-year-old ballerina is positively geriatric anyway and really should expect problems. It was not deemed worth investigating, in spite of the fact that I have a strong history of auto-immune disease on both sides of my family.
This pattern of being in pain, seeing doctors and being dismissed went on for about a year and my body became increasingly crippled by pain and swelling in a variety of joints. I was constantly told that there was nothing wrong with me and that I should expect to live in pain – having pushed my body to the absolute limit - nearly all my life. Eventually, I managed to get some tests and my rheumatoid factor came back negative, so I was told accept that my life as a ballet dancer had finally caught up with me. At this point, I was using crutches and the pain in my feet, ankles, knees, shoulders, wrists, hands and elbows had become so bad that I finally realised that I needed a wheelchair. The speed with which this all happened was shocking and genuinely devastating. However, as I had had no formal diagnosis, I really had no idea what was really going on – and I just assumed that I was going to somehow get better.
Then, disaster struck and everything went downhill very rapidly. I was involved in a car crash – I was hit from behind and sustained various injuries and suddenly went into a huge flare-up which affected my entire body – and it became very apparent that I really was not suffering from dance-related injuries – no matter what the doctors were telling me.
All my joints and many internal organs were affected – as the fire of uncontrolled inflammation raged. I rapidly lost weight as my body consumed my muscles – it was terrifying. I went from a healthy 112lbs (51kgs/8st) right down to 80lbs (36.4kgs/5.7st) within a matter of three weeks. And, I could not move - I was in excruciating pain and my body contracted into a foetal position. I was moved to residential accommodation as I was so fragile and in so much pain that I had to be fed, washed and completely cared for. I lost not only my body but also all my human dignity. At this point I was told that I should get my affairs in order as my doctors really did not think I could possibly survive. I was given just two weeks to live.
Tests continued however, and finally one doctor realised that I had rheumatoid arthritis. He also told me that the usual treatment would be Methotrexate, but in his opinion, my body was so fragile at this point that it would have been foolhardy to start me on this drug. I was stuck – there was nothing else on offer. It truly was down to me to find a way out of this total entrapment – my body had let me down – it was such a shock as I had always taken my extreme physical fitness for granted. I was now locked into a body that could not move by itself – and if I was moved, the pain was so unbearable that I couldn’t even scream.
There was no viable conventional treatment on offer – so I turned to nutrition, mind/body medicine approaches, biofeedback and more in order to quell the out-of-control inflammation and buy myself some time. I looked to nature and realised that a wounded animal will simply hide away and rest, allowing its body to return to some sort of equilibrium. There was no viable conventional medicine on offer and this was all I had available to me – and thankfully, it worked, and the inflammation very gradually subsided. I then organised my own physiotherapy, using an electrical muscle stimulating ‘slimming’ machine to remind my brain of where my muscles used to be . . . I had to do this because what little remained of my muscles had become ‘disconnected’ from my brain and although I tried to move, I simply couldn’t remember how. I had to re-learn how to stand and then to walk. Slowly, slowly, I managed.
I have sustained several lasting joint deformities but I was incredibly fortunate in eventually finding a rheumatologist who took an interest in my case and fought hard to get me onto a biological therapy so that these deformities did not worsen. First, I had to try and ‘fail’ on various DMARDS in order to ‘qualify’ for biological therapy provided by our NHS in the UK. I started on Infliximab and Methotrexate – the Infliximab was incredible but I suffered many side effects with MTX and stopped this – however continued usage of Infliximab enabled me to go into remission. I eventually got my life back, I felt well for the first time in many years and the decision was made for me to stop treatment. All went well and I remained in remission for several years until I caught a respiratory infection which took me right out of remission and my RA symptoms came back with a vengeance. I went back to being a wheelchair user. My brilliant doctor switched me onto Tocilizumab weekly injections and I’m now back in full remission and I continue to be well.
My experience with RA has been hugely challenging – especially since I was a formerly ‘super-fit’ individual prior to the development of the condition. But, I also look back on these experiences with some gratitude as they have enabled me to experience Rheumatic Disease across the spectrum – from the very worst case scenario – right through to full, lasting and sustainable remission thanks to biological therapies along with healthy lifestyle approaches.
All this means that when I help to educate people with rheumatic disease, I can speak from a platform of deep knowledge and full empathy. Having been entrapped by RA for so many years and completely losing my autonomy, I have my independence once again. I am free to travel now, raising awareness of the need for early diagnosis and treatment and hopefully prevent others from experiencing the very worst that Rheumatic Disease can bring.
As I am now – happy, healthy and most of all, pain-free, I have enough energy to help inspire people with Rheumatic Diseases to live healthily – and to help raise awareness of the crucial need for early diagnosis and treatment.
About me and why I wanted to participate in the Stene Essay Prize
My name is Jayney Goddard, I live in Hastings, a tiny town on England’s South Coast – our claim to fame is that we were invaded by the Normans in 1066 – we have long memories and not much has happened there since.
I’m just coming up to 53 and have really been through a long, painful but ultimately uplifting journey with Rheumatoid Arthritis. I feel that participating in the Stene Prize gives me a chance for my story to be heard. I did suffer greatly from not being able to get an early diagnosis or treatment and I believe that this Essay Prize provides a platform for people with Rheumatic Disease to be able to speak out about the vital importance of both of these, and the reality of living with Rheumatic Diseases. I heard about the Stene Prize from the NRAS magazine – which I avidly read as it is a great resource for learning about the many advances in the field of Rheumatic Disease.
I’m dedicated to helping people learn about Rheumatic Disease, diagnosis and treatments and I spend much of my time writing and talking about this both formally and informally. I’m also keen to share information about how much we can do as patients to support our general wellness by adopting healthy lifestyle choices – including nutrition, appropriate exercise and using mind/body medicine interventions including, for example, Dr Herbert Benson’s “Relaxation Response”. Doing well on treatment has enabled me to fulfil a personal ambition of getting my MSc and I feel well enough to embark on my PhD next year – and I aim to research patient education and communication in the context of Rheumatic Disease. Should I be fortunate enough to receive a Stene Prize, I would use the funds to help support myself during my PhD research.
By the way, I’m back to my dance classes – a small but significant personal victory. Of course, I’m no longer a professional ballerina – but then, there are very few professional ballerinas of my age anyway. No, I simply go to a local class and begin my warm-up by gently doing my pliés and marvelling at my long journey – and the fact that I’m not in pain!
In closing, I would like to thank the entire rheumatology team at Queen Elizabeth Hospital, Woolwich – especially Dr Gerald Coakley and his Specialist Nursing team, who fought hard for me to be able to receive biological therapy. They have given me my life back and I am more grateful than words can really express.