Living with arthritis- Suzie's Story

Planning a family when you have arthritis can be daunting. So today’s living with arthritis story follows the inspirational Suzie Edward May.  When Suzie wanted to start a family she couldn't find the right information on rheumatoid arthritis and pregnancy… so she literally wrote a book about it herself!

We asked Suzie about her triumphs and challenges of living with arthritis and where she sees herself in the future…

  • What have you achieved since diagnosis?

"I was diagnosed with rheumatoid arthritis (RA) at age 28, one week before I started my first legal job following 4 years of university. Originally diagnosed in my feet, RA spread to every joint in my body within 3 months. I was understandably devastated and in complete shock. I didn’t understand what RA was, knew no one with the disease and honestly didn’t think arthritis was something I would have to cope with in my 20’s.

I spent my days doing my best to learn how to practice law and my nights learning about arthritis. I would drag myself into the city to work and be exhausted by the time I arrived – and of course in so much pain. For 2 years I pushed RA to the back of my life (hoping it would go away), before I realised that this wouldn’t work. My RA demanded my attention and if I didn’t give it some, I was going to suffer more.

I made a decision very early on therefore to embrace RA, educate myself, get empowered and take back some sense of control over this disease that was so unpredictable. I got involved in my local arthritis organisation and later Arthritis Australia and used my experiences and life skills to help others.

I worked as a Legal Consultant (albeit from my bed often - as my brain still worked even though my body often didn’t!) and continued to fulfill my career goals, but just in a different way than that which I had originally planned. I began lecturing medical students in living with arthritis; speaking at public events on arthritis; and mentoring other consumers. My life with arthritis became more meaningful as I focused on the greater good of all people living with arthritis, not just on myself.

Through my current business Giving Voice (www.givingvoice.com.au), I have been able to use my advocacy skills in the health area to continue my work for people living with arthritis. Mentoring others; speaking to different groups to raise awareness; helping people and businesses find their authentic voice; being involved in the teaching of our future medical and healthcare professionals; is all a result of living with RA myself. I have turned a negative situation into a positive one, by helping others and raising awareness of issues I am intensely passionate about."

  • What is the greatest challenge and how have you overcome it?

“My greatest challenge with RA was creating a family. I am so proud to say that we have 2 beautiful children who are now aged 6 and 8. Planning, carrying then caring for them has been an incredibly hard process alongside arthritis, but I did it (twice!) and I have no regrets. When we decided to start a family, I looked for information to guide me as to how to have a child while living with chronic arthritis. I searched within Australia and worldwide and found nothing. I was shocked. There had to be other women going through what I was going through – I was desperate to talk to them and learn from them.

So I made a decision to reach out to others worldwide who had been through this process before me, and learn. I also decided that I wanted to start a conversation about arthritis and pregnancy and raise awareness about the isolation I was feeling, so that other women would not have to feel the loneliness and fear that I felt.

The result of my research and 3 years of writing is ‘Arthritis, pregnancy and the path to parenthood’, the first book of its kind to deal with issues of pre-conception, pregnancy and early parenting with arthritis. My book has now reached women in 14 countries and the incredibly positive messages I receive from them make every challenging step, worthwhile."

  • Where do you see yourself in 10-20 years?

"After 13 years of living with RA, I can honestly say that for the majority of my days, I have RA in perspective. It is important and it has to factor into my daily life, but it does not control me, nor does it stop me achieving my goals. I have used it to empower me to be the best person I can be and to help others.

I teach my children about empathy and compassion and remind them that we all have challenges in our lives. It is how we respond to those challenges that define who we are. Yes I live with pain everyday, but RA has given me opportunities that I otherwise would not have experienced. I am grateful for what it has taught me and the person I have become because of it.

In 10-20 years, I see myself surrounded by my gorgeous family and friends who continue to love and support me; still involved in the great work I do now for people living with arthritis; and continuing to give RA the time and energy it demands, without losing control of other parts of my life.

I see great hope in new medical advancements to support me with my health and possibly even steps towards or achievement of a cure for many musculoskeletal diseases. I see more understanding in the community about what arthritis is and whom it affects; flexible workplaces where people living in chronic pain can balance health and career with support.

I also see many of my long-term friendships with other strong women and men living with arthritis continuing, as we all face the unknown health challenges that lay ahead.

In myself, I see a strong, determined woman who will always strive to learn, understand, educate and empower others. And, I see my children as mature, compassionate, empathic adults who have learnt important life lessons as a result of having a mother who lives with RA."

Thank you so much Suzie, for sharing your living with arthritis story with us. It is so inspiring to hear all that you have achieved and your experiences in family planning with arthritis.