Hope through Support and Empowerment

Knowledge truly is power 

“I first learned about Arthritis Ireland at my very first consultation with my rheumatologist over a decade ago. While I was familiar with the name, I knew nothing of the extensive services the organisation delivers. My rheumatologist handed me a leaflet and advised that, by joining Arthritis Ireland, I would have access to information, resources and support that would help me to adapt and find my way with my rheumatoid arthritis and fibromyalgia diagnosis."

“I remember how overwhelmed I felt at that point. I was so grateful to then be linked up with all these resources. At that point, I didn’t know anyone else my own age with the same complex conditions, and that is a very lonely place to be, especially as a new mother. My first pregnancy was extremely complex given that’s when many of my symptoms first fully manifested. I was lucky that my Obstetrician recognised that there was an underlying condition causing my severe symptoms. I recall being so weak at one point that I couldn’t leave my home for over six weeks. Diagnosis of multiple other autoimmune conditions as well as respiratory, cardiac, gastro and ENT conditions followed over the coming years adding to the complexities, as one condition will often affect another."

“I learned from Arthritis Ireland that movement, nutrition, quality sleep, looking after our mental health and pacing are all crucial parts of a wellbeing toolbox.” 

Staying on top of things 

“I now take a lot of daily medications – taken as oral tablets, gels, drops, inhalers and weekly injections – which is, in itself, a job to manage. However, I am now so accustomed to it all that I have a very carefully planned medication schedule and detailed list for hospital visits etc. which I carry at all times. It is essential to keep your doctors in the various specialties updated on everything, including any changes in medications and development of new symptoms so that they can look at the full picture."

“When I received the arthritis diagnosis, I was mostly relieved; far better to know the cause, receive treatment and educate myself on self-management. Knowledge is power. Of course, it can be overwhelming, given the unpredictable nature of rheumatic diseases, but I am proactive. It took quite some time to find the optimum combination of medications for me, as it’s very individual. Also, medication alone is not enough. I learned from Arthritis Ireland that movement, nutrition, quality sleep, looking after our mental health and pacing are all crucial parts of a wellbeing toolbox."

“I am immunosuppressed and must be careful to avoid infection as much as possible. Initially this can feel quite daunting, but I have found, particularly since the pandemic, these practices became more second nature. Others are now more mindful to let me know if there is an illness I could be exposed to in their company. Also, with the onset of osteopenia at age 39 and multiple broken ribs, I have been focused on trying to protect my bones from further fractures, and now incorporate weight bearing exercises in my daily routine.” 

“I moved on from grieving the life I thought I would have and, instead, could focus my energy on discovering ways to make things works....” 

Acceptance: the key to unlocking self-management 

“Family and friends will often expect patients who are receiving treatment to be symptom free. However, this is certainly not the case for myself and many others. I must work hard at self-management every day to reduce the levels of pain and stiffness and try to keep them at a level where I can function well enough to carry out the necessary daily tasks. This means that pacing is crucial. What I can physically do on one particular day will very heavily depend on the days before and after."  

“Advance planning and organisation is crucial and is now a natural part of my routine. I have planners for everything and make daily action plans. This is the approach that works for me but of course it is individual. Since accepting the condition, this has brought a certain degree of freedom and peace. With acceptance I moved on from grieving the life I thought I would have and, instead, could focus my energy on discovering ways to make things work by adapting to my present needs and abilities. This also meant adjusting my own expectations. Acceptance does not mean giving up, quite the opposite."  

“I am grateful for the things I can do, even though it means I must do them in a different way. I had to re-evaluate my life goals and my route to achieving them, but once I had access to good support through my healthcare team and Arthritis Ireland, I found I did not give up hope. My RMD’s do not define me but they have helped shape who I am today – this is something I choose to accept and appreciate rather than resent. It is important to commit to your own health care management and be accountable. Because of my RMDs, and all that I have learned through Arthritis Ireland, I have a more balanced outlook on life.” 

“I now know I have a strength and resilience within me that will take me through the dark days with a smile.” 

Looking outside myself, but also within 

“I have a lot of empathy and understanding for others. It has broadened my awareness and introduced me to so many people I would never have met otherwise. Sometimes it feels like I am existing in other people’s world where I can’t keep up. However, thankfully, over the years, by implementing my practical self-management skills, and meeting others with similar conditions, the lines between ‘us’ and ‘them’ have blurred."  

“When faced with difficult life challenges, some were surprised by the strength and resilience I demonstrated. I can honestly attribute these skills and my ability to dig deep when needed, to my journey of learning to live well with arthritis over the last decade. It has without doubt impacted me immeasurably. I found a strength I didn’t realise I had. I now know I have a strength and resilience within me that will take me through the dark days with a smile, and the clarity to know that ‘this too shall pass’.” 

“There is often a stigma and a level of dismissiveness that comes from a lack of understanding and awareness.” 

Connection: the lifeblood we all need 

Membership of Arthritis Ireland to me, looks and feels very much like being part of a community. It is a source of understanding and a place where you know you will be seen and heard. In other areas of my life, I can feel as though I am wearing a mask. It is not intentional, and I am quite happy to openly speak about my conditions, but as it is not clearly visible to those who are not in the know. There is often a stigma and a level of dismissiveness that comes from a lack of understanding and awareness. 

“It can be exhausting explaining – and worse still – feeling I need to convince others of my condition and justify my limitations/differences. Making the invisible visible, and removing the unfair stigma, which is often attached to invisible illnesses, while showing others the immense support available is something I would love to achieve. My Arthritis Ireland membership has brought a certain comfort - a safe space where I can just allow myself to pause, breathe, talk and heal knowing that everyone there ‘gets it’. 

“Many patients worry about being a burden, but I truly believe the bravest thing that anyone can say is ‘help’. Joining and showing up is brave. We are advocating for ourselves to get the support we need. It is also a fantastic opportunity to reach out to each other. We share in each other’s triumphs and build each other up. We pass on practical, relevant advice. I have found that within Arthritis Ireland there is a level of kindness and compassion that surpasses expectations. At one group session, we experienced how laughter is a powerful drug. The funniest scenario on Halloween week had us all doubled-up (in laughter, not pain!) and it really was a great reminder of how laughter releases so much tension in the body and mind!” 

“The courses offer the opportunity to connect with each other as a community and help to empower us to live well with our RMD, not simply survive it.” 

Staying informed: leading to empowerment 

“The Arthritis Ireland podcasts, webinars and blogs are invaluable. Following the birth of my second child, and in a substantial flare, I had the opportunity to attend a lecture on RA, where the guest speaker was my own rheumatologist. Despite being in significant pain, I made the effort to attend because I knew with certainty that it would be worthwhile. He imparted so much valuable information and wisdom from his decades of experience. I came away feeling more hopeful and understood. I also had a clearer understanding of why consultants may ask certain questions, and what specific information they need from us. It was a turning point for me, and I found from then on, my consultations were far more efficient and productive. 

“Arthritis Ireland also keep their social media platforms fully up to date and this is a great resource, helping members to stay on top of current news and new developments in the RMD community and industry worldwide. They are also involved in research, which is really encouraging to read about. As patients we are often invited to take part in research studies and clinical trials. This is a positive step towards a future cure for our RMD conditions. 

“I have recently taken part in two six-week courses with Arthritis Ireland which I found invaluable. The courses were developed by Stanford University and have proven to be very successful in reducing participant’s pain and fatigue, while improving their quality of life through implementing practical skills. They are run by members who have similar conditions and who decided to train as course facilitators having first taken the course themselves, meaning they have a unique insight. The courses offer the opportunity to connect with each other as a community and help to empower us to live well with our RMD, not simply survive it.” 

The above is taken from Fiona’s essay which was entered into the EULAR Edgar Stene prize 2024.

Read Fiona’s full essay  here.

Sign-up for one of our FREE online courses 

If you’re interested in benefiting from one of our free online or in-person courses that Fiona participated in, please visit our Living Well with Arthritis webpage or our Living Well with Pain webpage. 

Find our about our Clinic Referral Programme here.