MS changed our parenthood plans
Life with MS can be uncertain. And planning a family comes with unique questions and challenges. Hannah Connor talks about how her and her husband's plans to become parents changed after her diagnosis. And how they're adapting to suit their needs.
Losing control after diagnosis
I was diagnosed with relapsing remitting MS in September 2020, weeks away from my one-year wedding anniversary. My partner and I were planning on starting a family at the time. I didn’t expect to be choosing a disease modifying therapy to control my rapidly evolving, relapsing remitting MS. This certainly wasn’t in ‘my plan’.
Nobody told me when I was diagnosed that I’d live my life with uncertainty. Questioning everything, and I mean everything! I’m a planner - I plan for everything. I’m a Team Leader, Executive Assistant and I do newborn photography too. So, I must stay organised!
I like to be in control. However, planning and MS don’t always go hand-in-hand unfortunately… which is where the questions come in.
A never-ending list of questions
Living with MS means lots of questions. How will I feel next week? How will I feel tomorrow? How will I get there? Who will I be with? Where will I be sitting? What if it’s hot? Will there be a toilet nearby? What if I get tired? What if I can’t make it? Will I let everyone down? The list goes on.
The first question I asked my neurologist was “Can I still have children?” I can, but only after I’ve completed two years of being on cladribine. This hit me pretty hard. It took time for it to really sink in that my plan had been put on hold.
Changing plans to suit our needs
So, I began living life with MS, discovering what had changed for me, what my new ‘normal’ was. The more I learn about my new normal, the more questions I have around starting a family. Although I can, can I? I’m so tired. I never know how I’m going to be from one day to the next, sometimes one hour to the next.
Is it fair? Is it fair to mother a child when I can only walk so far? My hands are so numb, how will I hold the baby? Would I be better off without children? How would my life look without children? Would having a child cause difficulty between me and my husband? We live such a lovely life now. I can have my tired days guilt-free because he gets it. But will they be guilt-free if we have a child?
Will I be able to manage being a mother, working and my photography business? I love what I do. I’ve worked hard in what I do. What about childbirth? How will childbirth affect me? Will it cause a relapse? This can happen when the pregnancy is over. What damage could that relapse cause? When will my MS progress? When will it turn into secondary progressive MS? What will that mean for me?
Read more about pregnancy, birth, breastfeeding and MS
Facing the future with uncertainty
Question after question and there are no clear answers. I’ve always been sure about wanting children. So I feel upset and angry MS has turned it into an uncertainty. Uncertainty is especially difficult to deal with for a planner like me!
My husband John and I have spoken about this in depth. We’ve discussed our options and agreed we still have time to find the right answer for us. Our new plan is to take it day by day and focus on right now.
I’m still a newbie to MS and I still have a lot to learn. Whatever we decide will be the right decision because we’ll make sure it is. I’m not saying this is easy for me. But we’ll continue to change our plans to suit our lifestyle and remain positive.
I’m so lucky I have an amazing husband, an amazing family, and amazing friends. We’re also very proud of our gorgeous niece and nephews, and that may just be enough for us. Whatever we decide about our future, I know we’ll always be supported, whatever MS throws at me.
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MS is unpredictable and different for everybody. This MS Awareness Week (25 April-1 May 2022) we shone a light on uncertainty and MS.
We shared stories from our community about dealing with uncertainty.
Get in touch to share your story.
