Arthritis, Pregnancy and the Path to Parenthood is more than the story of Suzie Edward May’s quest to have a child, it’s a book about how to have a baby while surviving with your health and sanity intact.
Written during Susie’s second pregnancy, the book takes us through the journey of preparing to have a baby, the physical and emotional challenges of stopping medication, what you might face while pregnant, including low energy and a possible flare, and practical tips for parenting with RA in the first year of your child’s life. Dotted throughout the book are quotes from mothers with RA sharing their stories and coping tools. The book also includes excerpts from Susie’s diary written throughout this journey in which she openly shares her worries and feelings related to RA, her future, and the relationships in her life.
This is a terrific book that would be a tremendous help when preparing to have a baby - a time that can be nervewracking when you have RA, but the book helps you remember that it is also exciting, life-affirming and wonderfully normal.
I recently reached Suzie at her home in Perth, Australia.
What prompted you to write this book?
When we decided to start a family, I searched worldwide for information to guide me through the process of having a baby while managing my RA. To my surprise, I found nothing. I was determined to fill this gap by providing others with a resource that would alleviate some of the isolation and loneliness that I felt on my own path to parenthood.
Please tell us about your children
Oscar is 3 years old and is bright, happy and healthy. He has a cheeky smile, big blue eyes and long eye lashes that any woman would die for! Olive is 6 months old and is discovering the amazing world around her. She has an adorable laugh, a gentle nature and always has her eyes on her big brother. They are a blessing in our lives and bring us more love, laughter and joy than we ever anticipated.
What are some of the most difficult things about having RA? How do you deal with them?
- A lack of understanding about what RA is results in either people not taking my illness seriously or discriminating against me because I don’t look like I have a disability. Whenever I get the chance I try to educate people about RA and how it impacts on my life.
- It’s frustrating living with an illness that can be so uncertain. I can be well one day and unable to walk the next. I have learnt to be flexible and to take each day as it comes.
- Pain has become part of my everyday life. I don’t remember what it is like to not feel pain. My children motivate me to manage my pain so I can provide for them.
What are some of the considerations you have to think about when deciding if you’re going to have a baby?
How will you cope with coming off medication and during pregnancy? How you will care for your baby when you are flaring? What is the opinion of your medical team? While you may want to consider the views of people you trust and respect, it is ultimately a decision for you and your partner (if you have one).
How did it feel to go off your meds?
I was nervous about how I would cope physically without medication. However, what I had not considered was the psychological impact. While I felt physically and emotionally vulnerable, I surprisingly also felt a sense of freedom. It felt good to cleanse my body of drugs in preparation for creating new life.
You had a severe flare in your second pregnancy - could you tell us about that, how it affected your life and how you managed your symptoms?
This flare was severe and constant and I survived on fortnightly cortisone injections into my toes, knees, hips, shoulders, wrists, fingers and neck. At times I was unable to roll over in bed; get in and out of bed; drive or squeeze a tube of toothpaste. Caring for our toddler was incredibly challenging so we spent a lot of time at home doing activities that I could manage such as reading books, puzzles, crafts and sitting in the garden.
How would you recommend women prepare for the possibility of a flare during their pregnancy?
Be guided by your Rheumatologist about the medications that are safe to take. Think creatively about how you manage pain - consider safe strategies such as meditation. Asking family and friends for practical support (housework, cooking, child minding etc) will be vital especially when your baby is born.
What emotional challenges did you face while you are pregnant and how did you deal with them?
I had fears surrounding a potential post-birth flare; concerns about how well I could care our baby; and worries about whether my body would let me down. Speaking with supportive family and friends, my Rheumatologist, Obstetrician and Psychologist helped alleviate some of my concerns.
What are some of the most important areas in which you need help when you’re pregnant or a new mother?
Accepting a meal, allowing a friend to fold your laundry, make the beds or clean the kitchen will all help take the pressure off you. When you are sleep deprived and dealing with the onset of a post-birth flare, you will benefit from your partner (if you have one) taking the baby for a walk while you sleep, taking over baby’s bath time, and taking you to the beach or cafe to get you out of the house.
What do you recommend in terms of coordinating your medical team to make sure your joints and your baby are protected?
While you can’t make the members of your medical team talk to each other about your care, you can educate yourself about what should be happening to you and your baby during this process. If you are fully informed then you can encourage communication between your medical team.
What was the most challenging thing about being pregnant and becoming a mother with RA?
The energy needed to get through the pregnancy and to care for my children. I was used to resting when unwell. I am now less likely to be able to rest when flaring. Finding the physical and mental strength to keep going when I want to go to bed can be hard.
What was the most surprising thing you learned while you were writing the book
That I was not alone. Connecting with other women around the world highlighted that my feelings and thoughts were not unique to me. As others opened their hearts to me, it reinforced why I had to write this book. These women needed and deserved a voice and many of them had believed they were the only ones feeling what they were feeling.
Suzie Edward May lives in Perth, Australia with her husband and two children. She works as an advocate with the Australian Arthritis Foundation, supporting the newly diagnosed and helping to educate the public and medical professionals.
Arthritis, pregnancy and the path to parenthood, Vivid Publishing Western Australia 2010. $29.95 AUD (plus postage). Available at www.suzieedwardmay.com
You can read more of Lene’s writing on The Seated View.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.