Suzy May: One Woman's Path to Parenthood With Rheumatoid Arthritis
One woman's journey through pregnancy and parenthood with rheumatoid arthritis.
At 31, Suzie Edward May was ready to start a family. She had a happy marriage, a fulfilling law career and a longing for children to love. She also had rheumatoid arthritis (RA).
For the previous four years, RA had intervened in almost every area of her life, but she was determined it was not going to take away her chance to be a mother. "My determination to create a family of my own was too strong to be shaken by RA," she says.
Her determination paid off. Today she is the happy, if sometimes weary, mother of 5-year-old Oscar and 2-year-old Olive.
But the path to parenthood was far from smooth – even from the start. Deciding to become pregnant meant giving up the medications that had controlled her disease and made her pain more bearable. While she had steeled herself for the toll that would take on her body, she says she was not prepared for the emotional effects of coming off her medications. "I did not anticipate the emotional pain that I would also feel and which, at times, was more difficult to deal with than the physical pain."
When a search for books to guide her through the process of having a baby while managing RA proved futile, she decided to write her own. The result: Arthritis, Pregnancy and the Path to Parenthood (2010 Vivid Publishing; www.suzieedwardmay.com), a resource that she hopes will alleviate for others some of the isolation and loneliness she felt on her own path to parenthood. In the book she shares her struggles, joys and advice from the painful days prior to her RA diagnosis though her two – very different in terms of RA – pregnancies. Interspersed are experiences and words of wisdom from other mothers and mothers-to-be with arthritis.
Arthritis Today had the opportunity to speak with May, of Perth, Western Australia, about becoming and being a mother with RA. Here is what she told us.
Was there ever a time that you considered not having children?
I had always wanted children (as did my husband). It was always part of my life plan and something I never considered giving up. We were fortunate that neither arthritis nor any other issue prevented us creating our beautiful family.
What was your greatest fear when you decided to begin your family?
Coming off medication in order to safely fall pregnant was a frightening proposition for me. I had become reliant on my arthritis medications to allow me to function and taking them away felt like I was removing a safety net from under me. I felt vulnerable and guaranteed to fall.
What was the most difficult part of pregnancy?
Physically, my second pregnancy was really tough. While pregnancy-wise, my body was doing everything right, my RA flared for the entire nine months. As my treatment options were limited, I could only have cortisone injections into my joints in an attempt to reduce some of the pain and inflammation. Emotionally, this was very distressing as I knew I was not likely to improve until after our baby was born and I was able to recommence medication. I was fearful of the long term joint damage I was doing to my body and incredibly nervous about whether all the cortisone injections would adversely affect our baby. Each time I had another injection, I prayed that our baby would be ok – thank goodness she was perfect!
What was the most exciting or rewarding part of pregnancy?
Experiencing my body doing something magical! After always expecting my body to let me down, it was amazing to see my body doing something right. The ability of my body to grow a beautiful, healthy baby while at the same time be ravaged with debilitating arthritis (flaring during pregnancy) is quite incredible. I made sure I celebrated my body during pregnancy. Even though I was in terrible pain, I bought gorgeous maternity clothes and showed off my bump as much as I could. I was very proud of being pregnant.
What is the most difficult part of motherhood with arthritis?
The need to keep going when I am in pain or am fatigued. Any mother (with or without arthritis) is going to feel tired. Whether this be tiredness from sleep deprivation in the first few months (or years!) of a baby’s life, or tiredness from the demands of older children who have school and extra-curricular activity commitments. Couple this “normal fatigue” with the fatigue caused by a chronic illness and the result can be physically and emotionally debilitating beyond explanation. For me, when I am tired my pain seems worse. Whether this be because my tolerance to pain is less or the actual pain is greater, but I know that I cope with pain a lot better when I have had a decent night’s sleep. As I am still flaring (6 months post-birth), my fatigue levels are still very high, however our baby is sleeping better so I am getting more rest which helps.
I also find it difficult at times to be positive and entertaining to my children when I feel so unwell. As I don’t want to show my children that I am in pain, I usually put a smile on my face all day and then collapse in a heap at night when they are in bed – when I feel I can be real about how bad the pain is. Unfortunately this means that my husband is faced with an often grumpy and exhausted wife.
What is the most rewarding part of motherhood?
Seeing my two beautiful, happy, healthy children discovering new things and enjoying life. They are my motivation to keep going when things feel too hard. Knowing that my body that has let me down so often in the past (and the present) produced two perfect little people, is the most wonderful and amazing feeling in the world. It gives me a level of trust in my body that I had lost with the progression of my RA.
How has your arthritis affected parenthood for your husband?
It has put added pressure on my husband as he not only has to deal with physical tasks that I have difficulty doing, but he must also deal emotionally with my moods! In my experience, living with constant prolonged physical pain can have a significant impact on your emotions, your level of patience and the way you feel about yourself.
How have pregnancy and parenthood affected your marriage?
There is no doubt that creating a child and bringing them into the world is a magical experience and something that deepens your marriage to a level that you perhaps wouldn’t have imagined. Coping through the challenges of pregnancy and parenthood with arthritis has both tested and strengthened our marriage. My husband has developed an appreciation for the immense sacrifice I made with my own body to bring our children into the world and he respects me for this.
How were your pregnancies different? How were they similar?
My pregnancies were similar in that, in terms of the babies, I had textbook pregnancies. Every time I experienced a symptom, I looked it up in my pregnancy book and it was always discussed under the exact week I was.
However, my pregnancies were very different in terms of how I experienced my RA. As I had only been off medication for six months prior to becoming pregnant with my first child, my RA was manageable. While I experienced three flares during the nine months, requiring cortisone injections to relieve pain and inflammation, I didn’t take any regular arthritis medications.
During my second pregnancy, however, I had been off medication for 12 months prior to becoming pregnant (because it took longer to fall pregnant, not because we wanted to wait that long) and I experienced an ongoing flare for the entire nine months. In fact, my RA was so bad that I survived on cortisone injections (between 6 and 8 each fortnight [two weeks]) into various joints (feet, fingers, wrists, hips, shoulders, knees and neck) as this was considered the safest treatment option for me. At times I was so debilitated that I was unable to roll over in bed, get in and out of bed, squeeze a tube of toothpaste, drive, change my toddler’s nappy [diaper] – during my second pregnancy – or dress myself. I was totally dependent on the cortisone injections to function. Toward the end of my pregnancy, the injections were only helping for about two days before my pain would increase again and I would be back to square one.
After going through all the trials of going off medication and going through your first pregnancy, what made you decide to do it again?
I never considered not doing it all again. My husband and I always wanted more than one child so it was more a question of ‘when’ rather than ‘if’ we would do it all again. We both have siblings and wanted to give our son the gift of a brother or sister if we were able to. We decided to wait long enough between children to allow me to breastfeed and to go back on medication for a while. However, I only lasted back on medication for 4 months after I stopped breastfeeding our first child before I came off drugs again to prepare for baby number two.
If you could give one piece of advice to women with arthritis wanting to have a baby what would it be?
While bringing your children into this world is likely to be a challenge, the fact that you already live with the debilitating impact of arthritis means that you are a brave and strong woman who is used to the need to be creative, flexible and practical about the way you live your life.
Educate yourself as much as you can about the struggles you are likely to face during this process and remind yourself that it will be the most rewarding challenge you will ever face in your life. If you are able to bring a child into this world, there is no doubt that your love for that child will transcend the physical and emotional pain you endured while striving to achieve this goal. And in turn, your children will one day recognize the sacrifice you made – on your own body – to give them life and will be inspired by your strength and dedication to your family.
If you could give one piece of advice to new mothers with arthritis, what would it be?
Do what you feel is right for you and your baby. Motherhood is a time when I believe instinct plays a big role. While some mothers with arthritis may feel determined to breastfeed their baby and delay returning onto their medications, others will make the choice to bottle feed their baby and restart their medications immediately post-birth. While some mothers will move in with other family members to help during the first few months, others will cope on their own with their supportive partners by their side. You are the best person to determine what you and your baby need – trust yourself and your ability to be a functioning, productive and loving mother, despite your arthritis.