I recently read “Arthritis, Pregnancy, and the Path to Parenthood” by Suzie Edward May. Suzie is a mother of two from Australia who has rheumatoid arthritis.
I had been eyeing this book for a long time, but wasn’t sure I wanted to order it all the way from Australia. However, it is really the only book of its kind out there, and I would say it is a must for any woman who has RA and is hoping to some day have children.
I talked a bit about my personal experience with this in the previous post, “Arthritis, Pregnancy, and the Path to Parenthood”.
But I’ve invited Suzie here today to tell you a little bit about herself and her book.
I love the cover of your book. You look so happy, despite the trials and tribulations that can come with getting and being pregnant (and a mother) while dealing with RA.
First off, can you tell my readers a little bit about yourself?
SEM: I am a 38 year old mother, wife, author and lawyer. I live in Perth, Western Australia and I have lived with chronic inflammatory RA for 12 years. I am an active health consumer with ‘Arthritis and Osteoporosis Western Australia’ and ‘Arthritis Australia’.
Why did you decide to write a book specifically about pregnancy?
SEM: When my husband and I decided to start a family I looked for guidance as to how to do it. I knew I had to come off my medication but it was very frightening to contemplate. When I found no information as to how to achieve this, I decided to write a book to fill this gap. I knew there must be other women around the world who had been through this process before me, so I worked hard to find them, speak with them and share their stories (and my own) through this book.
How much did you know about RA and pregnancy prior to becoming pregnant?
SEM: Being my first pregnancy, I only knew what I had read in ordinary pregnancy books. I hadn’t read anything about arthritis and pregnancy as such, as there was no information available about it. I had lived with RA for 5 years so I had some experience with it, but my real understanding and test of my body came during pregnancy.
Despite the issues that come with RA and pregnancy, did you always know you wanted to have children?
SEM: Absolutely. I was always going to be a mother. I never contemplated not being a mother. I was certainly never going to let RA (or anything else) stop me from becoming one.
One of the biggest components of becoming pregnant with RA is getting off of meds. Can you describe some of the challenges that come with this?
SEM: The challenges are twofold. They are physical and psychological. While I expected the physical pain and fatigue (although perhaps not to the extent that I experienced it), the emotional turmoil was very unexpected and difficult to deal with. After getting used to taking medication in order to function, I now had to trust my body and stop taking these medications, it was frightening.
I totally get that. It seems completely antithetical to go off of meds. What are some of the other challenges that come with getting pregnant with RA?
SEM: Some women fall pregnant easily while others take longer. Some women find that the more active their disease, the harder it is to fall pregnant. Some women need IVF treatment (even just to ensure they fall pregnant quickly rather than waiting months and months while off medication); while some women find it difficult to fall pregnant at all. It is different for everyone. There is little information about fertility and RA. Women need to speak with their Rheumatologist about their particular situation.
What are some of the positive aspects that come with getting pregnant with arthritis?
SEM: For me, I felt confident that my body could do something right for a change. When we feel like our bodies fail us (with our pain and disability), it can be a wonderful feeling to see our body doing something correctly.
Trusting your body when you have RA can be a very difficult thing. How important is, not just your rheumatologist, but your entire medical team, in getting and staying pregnant with arthritis? And at what point in the process do you bring them in (i.e. how helpful was your rheumatologist in talking to you about pregnancy before you became pregnant?).
SEM: Your medical team is always crucial in the management of your RA. During pregnancy, this is particularly so and you will likely be seeing more specialists such as an Obstetrician and/or a Gynecologist. I think it is important that your Rheumatologist (and any other specialist you usually see) knows that you want to become pregnant so they can help you through this process. They continue to play an important role during and post pregnancy, especially if you don’t go into remission and/or have a post-birth flare.
Some women go into remission during pregnancy. Others flare badly. Some women flare badly after giving birth. What advice would you give to women to be prepared for these varying possibilities?
SEM: Be prepared! You may be lucky enough to go into remission, you may not – you may have a post-birth flare, you may not – you won’t know until you are there. So, the best thing to do is put strategies into place so you (and your family) are supported during these potentially challenging times.
How much time did you have in between pregnancies? How long were you on meds before you had to go off of them again?
SEM: After giving birth to our first child, it took 26 months to become pregnant with our second child. This was due to a number of factors such as my choice to breastfeed (nurse); the time I took to detox off medications before attempting conception and the time it took to conceive the second time. I only returned to medication for four months between pregnancies.
Your book addresses pregnancy, but not infertility. Can you speak to this decision?
SEM: I did not find enough evidence linking infertility and RA to warrant including it in the book. It is a very interesting issue and I hope more research is developed in this area.
Some of my friends have started to have babies. While I can’t specifically speak to their experiences, it seems easy. What do you say to women with RA who want to have children, but know they will have a very different path than their healthy friends?
SEM: The fact that we live with RA (or any other form of arthritis or chronic health issue) means that we are living a different path from our “healthy” friends already. I also believe it makes us stronger as we overcome challenges everyday. I don’t believe parenthood is easy for any mother or father – I think it is the hardest role in the world – even if you are “healthy”. But it is also the most rewarding, incredible and worthwhile role you could do. If you are fortunate enough to have a child, the love and joy you feel for your child outweighs even the worst arthritis pain. I have no regrets and if I had my time over, I would do it again. My children are my world and while everyday brings challenges, they are worth it.
Would you recommend that partners read this book? I think it would be helpful to give my boyfriend a window into what our future might look like, but I’m also a little worried that it will scare him.
SEM: I think it is imperative that partners, family members, your friends and even colleagues and health care professionals read this book. The more you can help people close to you understand what you live with and what challenges you may be facing in the future, the better equipped others are to support you. The fact that our partners are with us, despite our RA, means that they love us. Preparing your partner for what lies ahead is so important. The more you educate others, the less alone you will feel.
That’s really good advice. What have you learned from your experiences?
SEM: I have learnt that we are not alone. That there are issues affecting women (and men) with arthritis that people are not talking about enough – like pregnancy and parenting. I have learnt that women with RA are strong and that they can achieve anything they put their mind to. I have learnt that information is power and that the more you understand, the less fear and isolation you feel.
What do you hope readers will get from your book?
SEM: Accurate, honest stories of women who have been through the process of having a family while managing chronic arthritis. An honest outline of the potential challenges you may face from pre-conception through to when your baby is 12 months of age. But most of all…hope, inspiration and a sense that you (and your RA) are understood and that you are not alone.
What’s next for you?
SEM: I have a couple of other projects in the pipeline that will be complementary to ‘Arthritis, pregnancy and the path to parenthood’. I look forward to telling you all about them soon.
Thank you so much for your interest in and support for my book. I wrote this book for you and your readers, so it is wonderful to connect with you all. Feel free to email me with questions or just for a chat at firstname.lastname@example.org.
Thanks so much for talking to me!
Thanks, Suzie for sharing your story! And thanks for stopping by Getting Closer to Myself today. And thank you for your e-mail to me when I ordered the book, before we talked about you doing an interview for my blog – and the personal note that you sent to me along with the book.
I purchased this book directly from the author, and you can, too! Visit http://www.suzieedwardmay.com/.