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 suzie@suzieedwardmay.com.
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/.
What a huge accomplishment, Dr. Leslie. Congratulations!
ReplyDelete"...the assumption is that all of your time and energy will be spent concentrating on school." You have had two masters - school and looking after your multiple illnesses.
By all means, soak in your success, and do let it go to your head and your heart. (This positive experience is a powerful stress undresser!"