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Starting a Family When You Have a Chronic Illness

 by Beth (@bethstephenson)

Deciding to become a mum is hard. Deciding to become a mum with chronic illness is really hard. In this piece Beth talks about her journey from motherhood to parenting with chronic illness and all the extra considerations that starting a family brought with it for her. She also shares her advice for mums with chronic illness!

I’ve always wanted to be a mum. I’m a very maternal person and when you’re young, you feel invincible. I would be a parent one day. You don’t stop to think about how it might not be that simple.

When I was 17, I was diagnosed with M.E/Chronic Fatigue Syndrome after an inner ear infection left me housebound. Instead of going clubbing with my friends, I often struggled to even brush my hair. My worries back then were about missing out on my social life, losing friends, and my education. It wasn’t until a few years later, when I saw a family member running around after their toddler, that it hit me; I might not be well enough to do that. Parenting with chronic illness – how would that work?

This realisation was a real low point for me, but I was still young and managed to put it to the back of my mind. Luckily, I was able to make improvements to my health, went to uni and had a good quality of life as a young adult. My illness does compromise my sense of ‘normality’; I can’t work full time, can only do small walks for exercise, and have to pace myself every day. But, by the time I was 21, I was really happy.

Parenting with chronic illness - being a chronically ill mum
Parenting with chronic illness: Beth and her son Leo

At 26, I was diagnosed with another chronic illness; Postural Tachycardia Syndrome. I was put on medication to control my high heart rate and try to ease my dizziness and breathlessness. The consultant asked if it was possible I was pregnant, or if I was trying for a baby. She explained that the medication is unsafe to take when trying to conceive. Accepting the medication got me thinking once again about trying for a baby and how I would manage parenting with a chronic illness. 

Even though I always wanted children, actually deciding to take that leap and try for one is so scary! I was worried about not being able to manage my health and a baby…about not being good enough. I thought it might be selfish to have baby when I knew I wouldn’t be able to do everything other mums can do. I also worried that my children might end up ill too. I didn’t want my future child to miss out…or to be ashamed of me. And of course I had to think about weaning off of the medication that was managing my symptoms.

Ultimately, my husband and I decided we did want to have a baby and were so lucky to have lots of support around us. I felt so grateful to fall  pregnant with my little boy, Leo (now 10 months), and after a rough first trimester I felt quite well during the second trimester. The third trimester was when the reality of becoming a mum with a chronic illness hit. My worries really amplified and I was convinced I wouldn’t cope.

Parenting with chronic illness - deciding to start a family
Parenting with chronic illness – deciding to start a family

Parenting with Chronic Illness: Being a Mum with Chronic Illness

I know every chronic illness is so different and fluctuates a lot (mine does too), and for some people they will have to make the very hard decision not to have a family. I can’t even imagine how tough that would be. 

If you’re in a similar position to me and you’re thinking you do want to try, or you’re pregnant, or have a child, these are just some of my feelings and tips about chronically ill motherhood so far…

Mum friends are so important. Most of my mum friends don’t have chronic conditions, but that’s not important. It’s more important that you can be open with them. It can be hard making friends with limited energy; I found the Peanut app brilliant for this! You will realise that, healthy or not, many other mums feel the same worries and anxieties as you. Lots of mums feel they aren’t good enough, they aren’t doing things right, there are times where they can’t cope and they need lots of support. There will always be someone doing ‘more’ than you or who on the surface seems to have everything together; the perfect life. Under the surface though, that’s probably not true. The majority of us are absolutely winging it and hoping for the best!

There are some support groups for chronically ill parents which can be both really useful and overwhelming. People tend to use these groups for help when things aren’t good, and so you see posts from people who are struggling and little from the many people who aren’t. Sometimes I join these groups but keep notifications off, to keep a balance.

Accept support if you are lucky enough to have it. This goes for all parents but for those with a chronic illness, you especially need to pace yourself and rest for the sake of your health.

You are enough. All parents are different, there’s no right or wrong way, and you are the perfect person for your baby. There will be days with endless screen time, pouches and takeaways. Days where you lose your patience, days where you nap together. Days that are completely brilliant. It’s all okay.

Don’t let people scare you. The ‘just you wait’ crew will tell you that you have no idea what’s coming, you’ll never sleep again and basically, your life is over. This narrative is so unhelpful and when you have health issues and are already worried about coping, it can heighten that anxiety. Set boundaries and let people know that you don’t want to hear this.

Take each day as it comes. Despite all that I have learnt, I have lots of days where I worry that I won’t be able to cope with tomorrow, or when Leo is a toddler, or when I need to work… It’s never-ending! I know I need to take it step by step and not get overwhelmed by the future. I’ve got this far.

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