Living with arthritis
Arthritis have been a part of my life from an early age. I was diagnosed with Acute Rheumatic Fever soon after my 7th birthday. I remember coming back from summer holidays (in the picture displayed), where I spent the majority of my time by the seaside; swimming, playing on the beach, building sand castles and getting sun burnt. Par my return home, I had streptococcal pharyngitis and couldn't get out of bed for the rest of the holidays. This was followed by various red spots and bruises appearing around my knees, ankles and foot, which were tender and painful to touch, prevented me from walking. Following a series of visits to various doctors and specialists, and trials of unhelpful medication regimes with severe side effects that made me feel worse, my treatment settled on the use of long-term antibiotics with a view to avoid recurrent infections to prevent progression to rheumatic heart disease. This involved monthly penicillin injections at a local Italian Hospital in Istanbul, Turkey (where I grow up) for years to follow. The injections stung and temporarily numbed my lower limbs, causing me to limp for the rest of the day. Which was not the image I was trying to portray at the school, and I dreaded the hospital visits. The distinct scent of the antibiotics are etched into my memory to this day. I used to get anxious when entering a pharmacy until my twenties, as I associated the scent with my visits to the hospital. On the upside, we have always stopped by the fancy stationery shop by the hospital afterwards and I was allowed to buy a nice pencil or a scented eraser to stop me feeling sorry for myself.
Since then, I have received various types of arthritis diagnosis to include Juvenile Idiopathic Arthritis, Osteoarthritis and Ankylosing spondylitis (AS) and a period of time I was also 'mis-diagnosed' with Fibromyalgia (I have more on this on my other blog on 'Diagnostic delay in Ankylosing Spondylitis: My Experience). All of these conditions has common symptoms of widespread chronic pain, fatigue and sleep difficulties and associated with other conditions such as Inflammatory Bowel Disease (IBD) or Irritable Bowel Syndrome (IBS) which I suffered with on and off, as well as Anxiety disorders and Depression, which is very common in people living with chronic pain. I learned on the way that a differential diagnosis can be a long, difficult journey. Over the years, I come to accept that arthritis was here to stay and if I were to have a life that I aspired to live, then I had to make friends with it. I am generally a positive person and I tend to believe that things happen for a reason. So, I counted my blessings instead of my difficulties and continued to live my life, pursuing my goals with a sense of resolve to not give in, by adapting the way I did things as and when arthritis tried to stop me on my tracks, developing my own self management strategies as I go. Things does happen for a reason indeed, as this led me to work in rehabilitation as a therapist and researcher later in life to help others with long term conditions such as rheumatic and musculoskeletal diseases (RMDs) to lead happy and fulfilled lives.
Making arthritis my jobLike most people, it took me while to recognise my true calling. Upon leaving the school aged 17, I first signed up for a degree in Fine Arts, then spent 10 years in training and working in the IT field as I stumbled upon this field as a student who needed to work, trying to make a living. Although my symptoms have improved considerably during my late teens and early twenties, when I become a mother of two at the age of 24, these started to show up again in the form of hand and upper limb pain, back pain and fatigue that come and gone frequently. At the time, this was attributed to Osteoarthritis as my inflammation levels were not quite within the diagnostic markers. Having to cope with arthritis and chronic pain as a young, single mother spurred my interest in health care, as I wanted to advocate the rights of people living with chronic conditions and improve access to rehabilitation. So I have decided to go back to University. Having completed access courses to ease me into the British academic system, I have applied to study Occupational Therapy at the University of Salford as this profession promised to encompass all aspects of rehabilitation I was interested in to get involved.
I really enjoyed my course and the extensive clinical placements I have undertaken during this time, so I couldn't wait to start as a clinician to work in the NHS. Naturally, I was most interested in working in rheumatology rehabilitation, as this was close to my heart due to my lived experience. At the same time, my degree also aroused my interest in research, as I was always on the look-out for the evidence-base to support current rehabilitative approaches, wondering what we could do better? So when I serendipitously came across a PhD studentship on "the epidemiology of self-care and joint pain in older adults" advertised on the Guardian Newspaper, I knew my stars were aligned and this was an opportunity I could not miss. At the time, I was at a final clinical placement within a secured, mental health facility, during my final year of the BSc and was holding a 'newspaper reading group' with patients, when this part of the paper was the last one left on the table. Anxious and full of self-doubt about pursuing a PhD without an MSc, I applied with an attitude 'what have I got the lose?' naively, in a way, not quite appreciating what to expect from this journey. Much to my surprise, I was awarded this prestigious PhD studentship at the Arthritis Research UK National Primary Care Centre, at Keele University. I was over the moon as I thought it was great that Keele was only a half an hour drive from my home, and flexible working nature of research meant I could be around my little children more, whilst I continued with my studies. At that time, little I knew that this was a huge turning point in my life and it will change my life in more ways than one.
Being a researcher did not get in the way of my clinical practice by the way. Shortly after the completion of my PhD, I started running a rheumatology OT clinic one-day/ week at the Mid Cheshire Hospitals NHS Foundation Trust which enabled me to ground my research on current clinical practices, and involve patients with arthritis and clinicians to contribute to the design, development and implementation of research projects we led at Salford. I strongly believe that this helps to bridge the gap between the creation of evidence-base practice in rheumatology and clinical utilisation of the new knowledge acquired through research. I loved having a multi-faceted job in which I had various roles as a Senior Research Fellow and academic and as an Advanced Clinical Specialist Occupational Therapist in Rheumatology. I was very grateful that the University of Salford supported me to take a clinical role on top of my full time academic role by allowing me to work flexibly. I then took forward the knowledge and expertise I gathered through my roles by participating in wider rheumatology communities such as the European League Against Rheumatism (EULAR) Scientific Committee and the British Society of Rheumatology (BSR) Council to represent health professionals in rheumatology, and supported people living with arthritis by getting involved with Charities such as the Versus Arthritis and NRAS to influence patient education, and policy and guidelines in rheumatology. In 2020, I have been appointed as the Honorary Clinical Academic Lead in rheumatology at the Mid Cheshire Hospitals, and was elected as the Vice President for the British Society for Rheumatology. I am grateful everyday for working in a field I love and feel passionately involved with, thanks to arthritis. Where would I be now if I did not have arthritis?
To summarise, as I made arthritis my job, I have written about my journey with a view to inspire the reader to pursue their goals, whatever these may be, despite the seaming limitations, challenges and road blocks on their way. We are all who we are because of our lived experiences, and what seems like a misfortune can lead to silver linings along the way! I think it will be apt to finish this longer than it was intended blog, with a quote from beloved Rumi, a thirteen-century poet, theologian, scholar and Sufi mystic:
"Everyone has been made for some particular work, and the desire for that work has been put in every heart"
Thank you for taking your time to read this.