It’s been a whirlwind couple of weeks and trying to take stock of the changes in my life has taken some time. Two months ago, I worked for Arthritis Ireland, and I was preparing to go to my last EULAR Congress as a member of the EULAR PARE Community.
As I sit here today, I’ve left Arthritis Ireland, established my own social enterprise and returned to the EULAR PARE tent – albeit in a consultative role.
The closest I ever got to planning my career was my first time in university, when still playing League of Ireland football, I decided I would be a full-time gym instructor/trainer and part-time footballer. That went well until I had my second cruciate ligament injury on the same knee before my 21st birthday.
Resilience and mental toughness weren’t an issue then but, having fallen into the hospitality trade, and still playing football, my RMD diagnoses took a heavy toll on my life – professional and personal.
For this reason, my advocacy has often followed two main paths. Firstly, employment, and when it comes to work, I’ve spoken about nearly all aspects of employment, from remaining in work, to supported return to work, from transparent supports for working to replacing sick notes with well notes.
My second area of real interest has become parenting and family planning. (there was a time when I thought having a family had passed me by) This area covers so much ground, family planning, parenthood and intimacy, particularly from a male perspective, stand out, however. My advocacy has found a home as research projects and patient engagement exercises cry out for men who are open and honest about the lives they live with their chronic diseases.
Just two weeks ago we had the first face-to-face meeting of the Lancet Commission for Rheumatology for Reproductive Health and Family Planning in Immune-Mediated Long-Term Conditions. We’ve been meeting online for about six months and agreeing to take part was the easiest decision of my life.
“Each year, an estimated 200 million pregnancies occur worldwide, yet very few medicines in the EU are adequately monitored, tested, or labelled for use before, during, or after pregnancy, or in men who wish to father a child.
This Commission therefore comes at a timely moment……….. there is a pressing need to take the field to the next level by embedding existing knowledge into systems, regulation, and everyday practice.
This is not just about medication, there are so many other areas requiring investigation from contraception to menopause, coordination of medical care to pregnancy loss and paternal issues. “All the way to a broader failure to deliver integrated, anticipatory, person-centred care across the reproductive and life-course continuum.”
As a patient expert with three children under 5 years of age, the invitation to become part of a commission that could potentially run for 15 to 20 years was too good an opportunity to pass up.
Collaborating with some of the best and brightest in the field of rheumatology is just a wonderful bonus.
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