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Rheumatoid arthritis and motherhood: A life of uncertainty, fear and pain

Suzie with her children, Olive and Oscar.
Suzie with her children, Olive and Oscar.

By SUZIE EDWARD MAY

“You have rheumatoid arthritis (RA).  There is no cure and you have to take medication for the rest of your life.  Oh, and you don’t want to have children do you?”

This is how I was propelled into a life of arthritis – of uncertainty, fear and pain at the age of 28.  My introduction into a world that made me question my purpose in life and my path to motherhood.

You see I was always going to be a mother. I never once questioned whether I would achieve this – it was a given, something I always knew to be true. So when a doctor posed this question, it sent a shock wave through my body. Not only did I have to process the fact that I had an incurable, debilitating, autoimmune disease, but I had to try to understand why he was questioning the one certainty in my life. This day of diagnosis, 12 years ago, was the worst day of my life.

I had developed pain in my feet four months earlier. I had great trouble walking as the pain was excruciating and I was dreadfully fatigued. I had chronic inflammatory RA and within three months of diagnosis, this disease had spread to every joint in my body.

I had always wanted to be a mother, no question.
I was always going to be a mother.
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In a few short weeks, my life was unrecognizable to me.  I was popping pills in attempt to make the pain go away and my head was reeling with information. In a few months I could feel every joint in my body – feet, ankles, knees, hips, neck, shoulders, elbows, wrists, fingers, sternum, jaw – each one stiff, hot, swollen and painful.  I was tired all the time and my body felt in need of being cared for. In fact, it screamed for it.

Five years in, my husband and I decided to start our family. We had come a long way from that day of diagnosis and since learnt that it was possible for us to have a baby, but it was likely to be a challenge. The medications I was reliant on to keep RA from eating away my joints were considered unsafe for an unborn foetus. Removal of this safety net to conceive felt frightening and insurmountably overwhelming.

Somehow I made it. Following a healthy and uncomplicated pregnancy with limited joint pain, I gave birth to our beautiful son, Oscar.

Seven days post-birth, I woke unable to move. For the next 10 weeks as we were adjusting to being first time parents, I was gravely debilitated. Each morning, after being up throughout the night breastfeeding, I would be unable to move my arms, shoulders or hands.  My husband would sit me up, place medication in my mouth and hold a cup of milk to my lips as I swallowed the drugs that would enable me to care for our son for the day. He would then bring our baby to me and prop us both up with pillows so I could feed him. Some days I would sit in bed after this feed for up to two hours with him on my chest until the medication kicked in and I could move.

While friends and family were supportive, I felt alone.

"My second pregnancy was completely different.  It was dominated by RA pain."
“My second pregnancy was completely different. It was dominated by RA pain.”
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My second pregnancy was completely different.  It was dominated by RA pain.  The pain was constant and I had great difficulty doing the simplest things like rolling over in bed and dressing.  I prayed that our unborn child was not being affected.

Our delightful daughter Olive was born healthy; and while my pain post-birth was bad, it was no worse than before or during my pregnancy with her.

Like all proud mothers, my children are my world. They motivate me to be the very best I can be, regardless of the challenges that life throws me.

Over time, I have found a balance between managing my health and living fully.  RA affects every aspect of my life and not a day goes by when I don’t feel pain. I am learning to ease off on the unrealistic expectations I place on myself. It has taken me 12 years with RA to realize that I cannot do everything a healthy person does. I need to rest, pace myself and plan. I need to take medication everyday and work on my mental health – one day at a time. I put on my brightest lipstick and face the day even when my body is screaming and I would rather stay in bed. I am fortunate to have two beautiful children, conceived, carried and cared for alongside a serious autoimmune disease. RA is not going to stop me from being the best mother I can be.

Suzie May
Suzie May

Suzie is an author, lawyer and consumer advocate.  She has been an active volunteer and public speaker with Arthritis and Osteoporosis Western Australia for ten years.  Suzie is dedicated to challenging the stereotyped views of what arthritis is and whom it affects and works with Arthritis Australia to identify and address issues affecting people living with arthritis.

Suzie’s book Arthritis, pregnancy and the path to parenthood is her gift to every brave woman with arthritis who dreams of becoming a mother.  It shares her story and the stories of women throughout the world who have courageously travelled this journey. It gives hope in the face of adversity and proves that motherhood is possible, despite chronic illness.Purchase Suzie’s book here. For more information on RA, visit this website.

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