My Advantage Hers Story – Suzie May
I’m honoured to be taking part in the Advantage Hers campaign in 2023. For me, it’s an opportunity to share my journey and support other women living with chronic inflammatory diseases (CIDs), such as rheumatoid arthritis, axial spondyloarthritis, psoriatic arthritis.
When I was told I had rheumatoid arthritis at the age of 27, I believe I was presented with 2 choices - either let this diagnosis destroy me or use it as a positive in my life. Thankfully I made the decision to turn the experience into a positive and do everything that I could do to educate myself, and eventually support other people, to live the best lives we possibly can with these conditions. I guess that’s been my philosophy through everything that I've lived with, and all the challenges that present to me while living with a chronic inflammatory disease.
At the time of my diagnosis, I really did not know what it meant. I thought chronic inflammatory diseases such as rheumatoid arthritis only affected ‘older’ people. It was a massive shock. I had no family history of these diseases and no knowledge of them. My rheumatoid arthritis began with pain in my feet and progressed to a point where I couldn’t walk. It was extremely debilitating, and I was very fatigued. I needed to understand my disease and my body. I had to grieve my body pre-diagnosis and what was happening to me. I had to understand the treatments that I was being offered and have enough knowledge to make the best decisions for my health and my future.
I was young and in the prime of my life. I had just finished my law degree and was applying for jobs to start my new career. It was not something I had pictured for myself in my 20s, let alone in my life plan.
As well as being career focused, I always wanted to be a mother, so it broke my heart when my (initial) rheumatologist first told me this would not be possible. My husband and I refused to accept this and made a decision to do everything we could to make it happen. We wouldn’t let my rheumatoid arthritis stop us. We decided to seek more advice from our (new) healthcare team, who told us my pregnancies would need to be a planned and I would first need to come off all my medications.
A lot has changed since I was first pregnant 17 years ago. Back then it was a really isolating time. There wasn’t a lot of information out there for women with CIDs and my treatment options were limited during my pregnancies. Today it’s a very different story, women don’t need to face many of the decisions as I did because there’s more support and more treatment options available. My advice for other women living with rheumatoid arthritis is to have a conversation with your rheumatologist about what your options are prior to getting pregnant, but also during the pregnancy and afterwards, including during breastfeeding.
Pregnancy and becoming a parent for the first time is overwhelming for any woman and living with a chronic disease can make the experience extremely tough. There were times I literally couldn't move. Everything was swollen. My hands were swollen, stiff and painful, I couldn’t pick our baby up. While I prepared myself as much as I could, there was a lot that I couldn't prepare for until I was in the situation. It would have been amazing to have known other women that had been through the process before me, who could give me tips and tricks as to how to cope. I didn't know any other women at the time who had a baby while living with CIDs. If I did it all again, that would be one of the main things I would do differently. I would learn from the stories of other women who had been through the process before me and understand how they did it.
Although it was physically and emotionally challenging, I would go through my pregnancies all over again to have our children who are so incredibly precious. It is an absolute privilege to be their mother and be part of shaping them into who they are. I am so grateful to have been able to have children and I am proud to have achieved it alongside living with rheumatoid arthritis. I believe that if you surround yourself with the right people, the right healthcare team and educate yourself, it is possible to achieve your dreams despite CIDs!
We are entering a new era where patients are no longer passive players in the health system, but we are active advocates for our own health and partners in all parts of the system.
As well as educating myself, part of my ‘game plan’ for living with rheumatoid arthritis has been to create a flexible life. I have built myself a fulfilling career as a legal consultant, a health advocate and educator. I work for myself which gives me the flexibility to be able to manage my health alongside my career and my family commitments.
Throughout my career I am grateful to have been a consumer advocate for State and National arthritis organisations, medical research organisations and a teacher to our future doctors on the lived experience of chronic inflammatory diseases in Western Australian medical schools. I sit alongside a panel of health professionals to develop guidelines for rheumatologists to treat CIDs in Australia, and advocate for broader consumer health issues for new medical technologies within the Australian Department of Health. I am passionate about doing everything possible to educate myself, other people living with CIDs, and our medical and health professionals, on what it is like to live with chronic diseases. I also want to be part of reforming our health system to improve the experience for people with CIDs, so they feel more connected and are able to access the right care, at the right time, from the right people.
Living with rheumatoid arthritis has taught me to be flexible, listen to my body, take control when needed, advocate for myself and build networks that support and empower me every day. As women living with CIDs, we can do this!