Photo: Woman looking out at the sea

MS and my decision not to have children

This is the hardest blog I've ever written. I’ve thought about writing it many times over the past 10 years, but I've been scared of the reaction. However I’ve learned that if I feel a certain way, there will be others out there who feel the same.

So, I’m going to talk about MS and my personal decision not to have children. I’ve always desperately wanted children and just assumed that one day I would have a family. But I’ve now come to accept that I simply could not cope, either physically or mentally.

I know lots of brilliant parents with MS

Lots of my friends with MS have gone on to have children after diagnosis. They are wonderful parents and their children are gorgeous. Naturally there are times when MS means they need some extra support, but they are doing brilliantly.

However I have chronic, utterly debilitating fatigue. There are massive fluctuations in how I feel hour-by-hour, with no predictability of how I will be from day-to-day.

The painful decision not to have a family

Managing my illness and coping with my basic needs such as getting out of bed, going to the toilet with medical aids, getting washed, dressed and making food, is an exhausting daily struggle. I get a good social care package and employ PAs, carers, to help me.

But given that I don’t already have children, I have made the painful decision not to start a family. I know I would desperately struggle to cope.

A visit from my friend and her children

My friend recently came to visit with her fabulous kids aged 2 and 6. They were here for 2.5 hours. I wasn't responsible for them - I wasn’t the one who had to change nappies, or stop them from running into the road, stop them from eating stones or from running straight into the sea.

But by the time they left, l was utterly exhausted. I decided to have some food and go for a lie down. I tried to eat, couldn’t swallow and choked. I didn't have the strength to unscrew my contact-lens case. I didn’t have the energy to correctly transfer and fell asleep collapsed awkwardly on the bed, with my legs hanging over the side.

I felt guilty about my decision

I often get asked if I have children and I feel under pressure to explain why not. Common responses include; “Oh, but you could have children if you had a supportive partner”... “But you can physically have children, can’t you?”… “I’m sure your friends and family would support you if you wanted to have children”… “Yeah but everyone is exhausted by children, you learn to cope with it”… “Can’t you adopt?”…

In the past, I felt incredibly guilty about my ‘decision’ not to have children. I’d frequently read that having MS shouldn’t stop me from achieving anything I wanted from life, but it had. I’d let MS beat me. I felt like a failure.

We need sympathy and support not judgement

Now, I feel differently. I am proud that there are days when I manage to do some voluntary work, or go out with my friends. I manage to squeeze fun and fulfillment out of life, despite MS. But I desperately wish I could say, “I can’t have children”, without being shouted down by people telling me that I’m wrong.

I’ve been through a kind of grieving process for the children I can’t have, whilst often feeling very alone and unable to talk about it.

And that is why I wanted to write this blog: because I know there will be others who feel the same. Those of us who decide not to have children need understanding, sympathy and support for our loss. Not opinion or judgement.

The author of this blog chose to remain anonymous. The photo is posed by a model.