How does it feel to be diagnosed with MS as a young woman during the prime of her life? How will this change how she plans for her future, manages a pregnancy, or tells her children?
The reality is women are 3x more likely to be diagnosed with MS than men. For Alberta residents, Melissa Hayes, Susan Hartung, and Robin Falkins, being a woman has profoundly impacted how they manage their MS every day, including how they’ve experienced their pregnancies and the ways they’ve adapted to motherhood.
Researchers leading the Canadian Pregnancy MS Cohort study (CANPREG-MS) aim to gather evidence-based, up-to-date, and personalized information surrounding reproductive issues and childbearing. As participants of the CANPREG-MS, Melissa, Susan, and Robin hope to share their knowledge to benefit future generations of women. MS differs from person to person, and this is no different for experiences such as pregnancy.
We sat down with the three women to discuss their personal experiences of managing their MS through pregnancy, motherhood, and more.
Q: What was your initial reaction when you were first diagnosed with MS?
Melissa: I kept my MS diagnosis quiet for years. I was diagnosed with relapsing-remitting MS (RRMS) in 2008, and as a 24-year-old in the workforce, I worried about the stigma this disease and some of its invisible symptoms could bring to my career as a reporter. Many people living with MS, including myself, can experience symptoms such as debilitating fatigue, numbness and loss of vision. It wasn’t until I needed to use a cane that I decided to go ‘public’ about my diagnosis. By that point, I had been living with MS for nine years. The outpouring of support was something I can’t even describe. That was when I realized the importance of raising awareness of the disease.
Susan: After receiving my diagnosis in 2011, I went home and decided to tell no one. Those were my darkest days. I lived in secrecy, hiding from the stigma of the disease. Living with an unpredictable and episodic disease means living with uncertainty about your future health and wellness. As a 21-year-old, I had many questions any young woman would have. I wondered about my fertility, my ability to breastfeed, and my symptoms after giving birth. I now use my experiences as a tool to help others affected by MS. I’ve taken that passion and brought it into my work as a manager for Jayman BUILT MS Walk.
Robin: When I first learned about my diagnosis, I was shocked. I went to the doctor alone and didn’t suspect anything life changing. In May 2018, my doctor told me that I had RRMS, and I started to cry. I left the appointment and called my mom before leaving the parking lot. That day I went to sit with a friend instead of going into work, and we talked for hours. Those immediate experiences helped me understand that talking openly and honestly is a tremendous help and knowing that I had the support I needed gave me confidence. I also learned that there are a variety of treatment options for MS, including disease-modifying therapies, physiotherapy, rehabilitation therapy, and wellness options.
Q: What is your experience with pregnancy after your diagnosis?
Melissa: When I first considered having kids, my MRI showed that my MS was progressing, so in consultation with my neurologist, we decided I should try to conceive right away. I got pregnant immediately and gave birth to a healthy baby boy. I was able to breastfeed for four months before going back on my medication.
Two years later, I went against my neurologist’s recommendation and went off my medication to have a second child. Being off meds for 10 months sent my MS into overdrive, and instead of having a baby, I experienced three severe relapses and disabling symptoms. After that experience, I needed to know I could stay on medication to manage my disease and safely get pregnant. I knew I couldn’t risk my health again. I’m happy to announce I had a healthy baby girl in January.
Susan: It’s difficult to say. My MS symptoms are relatively mild, so it’s challenging to differentiate some MS symptoms from pregnancy symptoms. Take dizziness as an example – it’s hard to tell whether this is a symptom of MS or the pregnancy itself.
Robin: There are only so many MS medications you can take while pregnant and breastfeeding, so our choice was a bit more limited. The doctors would tell me that my symptoms may go away while I was pregnant, but that I could have a relapse after giving birth. For me, being pregnant did make some of my symptoms disappear – my left arm was usually numb or tingly, and that hasn’t come back since getting pregnant. It felt relatively okay besides the morning sickness and heartburn.
Q: Do you plan to discuss your MS with your children? If so, how?
Melissa: My husband and I have explained to our oldest child that sometimes, mommy gets tired and needs rest. He also knows that sometimes I need to use mobility aids to get around. We’ve made the mobility aids a normal part of life, and because of that, he doesn’t see it as any different. I don’t talk negatively about my MS, and I’m sure this has helped him understand that it’s just a part of my life.
Susan: My greatest fear is that my children will feel a sense of abandonment when I need to go to bed for rest. But I like to lead by example and show them that they are worthy and deserving, and mommy needs some time for self-care too. I teach them how to identify and communicate their emotions to have better conversations about my MS.
Robin: I haven’t put too much thought into this yet, but we won’t hold anything back. I plan to answer all my son’s questions if he has any. My medication recently changed, so I no longer have to worry about giving myself a needle three days a week, with him watching and wondering what’s happening.
Q: Why did you enroll in the Canadian Pregnancy MS Cohort Study?
Melissa: We need more knowledge around MS and pregnancy. I wanted to contribute to knowledge about medication safety and pregnancies. If I could not remain on my MS therapy, I would not have decided to become pregnant. It gives me hope that more women will feel better equipped to choose how to have children when they are ready. I hope a study like this will help expand neurologists’ knowledge when it comes to advising women of their options during pregnancy.
Susan: We miscarried our first child. After the devastation, the experience turned into a valuable lesson. When I got pregnant again, I wanted to help address the gaps between patients and the research community to bring more treatment and symptom management solutions for women wishing to be pregnant. By contributing to research, I hope to help make MS less difficult for all mothers. I’m very excited to share that I gave birth to a beautiful baby boy in May.
Robin: I want to help future women by giving them hope when deciding to start a family. Miscarrying our first two pregnancies taught me that information about pregnancy and taking medication during pregnancy is limited. If these studies can help answer questions for the people who are beginning this journey, I know I will have done something right.
Q: What would you say to young women newly diagnosed with MS?
Melissa: There is so much hope for the future. With advancements in research, women who start treatment right away may never experience high levels of disability. When it comes to having a family, you can have healthy babies without compromising your health. Life with MS might look a little different than the future you envisioned, but it can be just as rewarding.
Susan: Quality of life with MS has seen significant improvements since my diagnosis, and with the help of funds raised at events, research will continue to discover life-changing treatments. I wholeheartedly believe that I will continue to see significant research progress during my lifetime, making an MS diagnosis for my children’s generation a very different experience from what it was for me.
Robin: I would tell her to make her MS treatment a top priority. With a professional healthcare team surrounding her, including online resources and peer support, a young woman can continue doing the things she loves without jeopardizing her health. I’ve taken as much help as I can and work hard not to let MS dictate my life.
My experience of giving birth and postpartum has been fantastic. I’ve had no relapses, and my son is now seven-months old. I remain as active as I can, but our activities are limited to everything that is happening globally. However, I try and go for long walks at least five times a week. My medication just changed too. I went from giving myself a needle three times a week to going in for IV infusion every six months. I am happy about this change.
CANPREG-MS is a Canada-wide study on women with MS who are either pregnant or planning their pregnancy. This study can continue during COVID-19 as it does not include any in-person visits. For more information, please visit the MS Society of Canada CANPREG-MS study page: bit.ly/3aSww0X. For further information, please call 1-800-668-2291 or email firstname.lastname@example.org.