Becoming a mother was always part of my life plan. Something I took for granted.
I certainly didn’t contemplate an incurable, chronic and painfully debilitating disease affecting my path to and throughout parenthood.
I was like most people in Australia who believe that arthritis affects people in their older years – not young vibrant women in the prime of their lives. The reality is, arthritis affects children, teenagers and adults of all ages. It is the leading cause of disability in Australia and even though it is a National Health Priority, it is still misunderstood as to what it is and whom it affects.
At the age of 28, with a new legal career about to commence, I developed excruciating pain in my feet. When I woke in the mornings and placed my feet on the floor, it felt like every bone in my feet shattered. I could not walk. After months of medical tests, doctors found “significant erosion” (holes) in my little toe joints. I was diagnosed with chronic inflammatory rheumatoid arthritis (RA) – an incurable autoimmune disease. Within three months of diagnosis, RA spread to every joint in my body. It remains there today, almost 12 years later.
Diagnosis and living with RA
The day of diagnosis and the years that followed have been the hardest of my life. They have been filled with excruciating pain, cocktails of medications (that have been injected, infused and swallowed), debilitating fatigue and hundreds of medical appointments. I have had days where life seems hardly worth the effort and others where I feel strong and determined. RA brought with it a sense of loss of control over my body and I had to learn how to redefine my life with arthritis in it.
For a while I tried to push RA to the back my mind and my life, but I soon learned that it would scream louder than ever if I ignored it. If it is not the physical pain of my bones feeling like they are being stabbed with a knife or being gouged by an apple corer, it is the emotional pain of being constantly reminded of the ever presence of this disease. Every time I overdo it by walking a little too far or too fast, lifting something I shouldn’t or eating something I know sets my pain souring, I am again immobilised by fatigue and joint pain. Every time I get stressed or take on too much, I flare and my body forces me to stop.
I made a decision early on in my illness to embrace RA and consciously manage it as an important part of my daily life. Giving RA the respect it so harshly demands has given me a sense of control over my body again and confidence in effectively managing its challenges. Despite this decision however, I didn’t fully understand the impact of RA and its related health issues on my life until I contemplated creating life beyond my own.
Preparing to start a family alongside RA
Most of the medications used to treat RA are unsafe to take prior to and during pregnancy and breastfeeding. So, prior to conceiving each of our two children, I came off the cocktail of medications that had kept me functioning since my diagnosis. I knew that without these medications, I was at risk of being in excruciating pain and extremely debilitated – but I had no choice. I wanted to become a mother and I was advised that this was the safest way of achieving it.
Removing the physical crutch of medications was not only taxing on my body physically, but it seriously challenged me emotionally. I had grown reliant on medication in response to my pain and taking them had become a way of life. Now that I could no longer pop a pill to make the pain go away, I had to think more creatively about my pain and how I dealt with it. Easier said than done!
Pregnancy and RA
Many women with RA are told that their disease will go into remission during pregnancy, leaving them pain and disability free. While this is the case for some women, for others, pregnancy equals more pain, more fatigue and more disability.
For me, I experienced both. My first pregnancy was relatively pain free. My second pregnancy however was dominated by pain. It’s hard to say what pregnancy will be like for each individual, but for those who do experience pain it’s important to consult your doctor and be grateful that pregnancy is only nine months!
The post-birth flare
I had two uncomplicated caesarean section births – too risky to expose my arthritic hips to natural childbirth. However, seven days following the birth of our first child, I woke (in hospital, thankfully) with a severe “post-birth flare” – an exacerbation of RA symptoms. I could not move.
For the next 10 grueling weeks as my husband and I were adjusting to the role of first-time parents, I was gravely debilitated with arthritis pain. My hands and shoulders were mostly affected, alongside a very painful bursitis in the neck, at a time when I needed these parts of my body the most.
Each morning, after being up three hourly through the night for feeds, I would be unable to move my arms, shoulders or hands. My husband would physically sit me up, place my medication in my mouth and hold a cup of milk to my lips as I swallowed the drugs that would assist me in caring for our son for the day. He would then bring our baby to me and prop us both up with numerous pillows so I could feed him.
In the coming weeks and months I faced other practical difficulties like baby clothes fastened with press studs that I could neither undo nor do up; and the copious amount of washing too heavy to lift in and out of the washing machine with my swollen hands. It was a very difficult and emotional time and while friends and family were supportive, I felt very alone.
Motherhood and RA
Our children are my life. They get me up in the mornings when my body screams to stay in bed. They teach me every day the meaning of unconditional love, purity and living in the moment. I would go through all the RA pain I have endured and more, just to hold them and care for them. It is possible to have beautiful, healthy children while also managing a chronic illness. The road may be tough at times, but with the support of others and your inner strength, you can achieve anything you desire.
If I had my time over…
…I would go through the process of having my children with a lot more information and support on hand. I would have loved resources (books, blogs, friendships with people who had been though it before me) to guide me and inspire me every step of the way.
My book – Arthritis, pregnancy and the path to parenthood – goes some way towards achieving this. It is a gift from me to other women so they do not have to feel the loneliness and isolation that I felt. They are now able to learn of what challenges lie ahead by reading of my and other women’s experiences. While the path of each woman will undoubtedly be unique, this book gives women hope and encouragement as they navigate their path to become mothers. I believe that information is power; and with an illness like arthritis (and many other chronic conditions), power is something we often feel has been taken from us. I live with this sense of powerlessness everyday as I know my life is shadowed by a disease that is both unpredictable and incurable. Educating myself about my illness and how I can live my life despite it, gives me back some of that power.