The Shit No One Tells You About Parenting When You Have An Invisible Illness

Mar 5, 2021 | Health, Hospital, Parenting, The Shit No One Tells You

There are over 14 million people disabled people in the UK who each live with unique talents and challenges in their daily life; and those with invisible illnesses often go misunderstood. For those that are parents, particularly to young children, there’s lots of workarounds and things to consider that many people won’t have ever thought of. Rachel talks through her experience as a mum to a newborn; with added hurdles.

This is a guest post, written by an author who has chosen to feature on EatWeepMumRepeat, and not Lex (the usual blogger). ‘The Shit No One Tells You About…’ series will follow a whole host of parents sharing their unique parenting experiences and stories. If you’d like to take part and write, get in touch at eatweepmumrepeatAToutlookDOTCOM or slide into my DMs on Instagram.

Rachel is a chronic illness advocate and NHS frontline worker. She has multiple complex chronic illnesses and disabilities, and juggles these alongside daily life and parenting. You can catch up with her over on Instagram where you’ll find brilliant, honest posts on managing disability… and a lot of tea drinking. Rachel works with a campaign to increase the visibility of rare diseases called I Am Number Seventeen and recommends the Ehlers-Danlos Society for anyone living with that condition.

For more information on hidden and invisible illnesses and disabilities, you may find the Hidden Disabilities Sunflower campaign helpful.

“I’m Rachel, I’m 31 and I live in Surrey. I live with multiple complex conditions and rare diseases. I’m a wife and a mum to crazy energetic 17-month old son Vinnie. I’ve always known from a very young age that I wanted to be a mum and have my own loud, messy and crazy family. I just wish that someone told me earlier that all the shit I was reading online about pregnancy, birth and parenting is a far picture from reality when you’re disabled.

You have to be prepared to not fit the classic ‘Mum’ image you see on social media.

As soon as the 12-week scan was out of the way, it was the time I felt I could start planning! I did what many parents do: started to follow as many mum and baby accounts as possible to search for inspiration, information and guidance surrounding expectations… but quickly realised these were all accounts of women who have no pre-existing medical conditions.

In all the excitement, I forgot to think about how my disability would affect my parenting. I see lots of disabled parents say that they don’t let their disability affect their ability to parent, but personally, I find that bloody hard to believe – because there are SO many things I’ve had to change in order for them to work for me surrounding my disabilities. I wish I’d known that sooner, and shed guilt around doing it.

Your dream delivery may not be an option. You gotta do what you can, safely.

I had always pictured a serene, relaxing and natural water birth in a calming setting. I was daydreaming of having a full face of make up on, my hair in a pretty mum-bun, cute swimwear on and mood lighting with the fan blowing in my face making me look like I was in the middle of a photo shoot… but SHIT. How far from that image was my delivery? Lightyears. I was told straight off the cuff that I absolutely could not deliver naturally safely and would need a planned caesarean section in hospital. All I could focus on was how cold and clinical it would feel – particularly as my life is already immersed in hospitals and treatments and medical staff. Having a c-section was absolutely NOT how I imagined my delivery… and how many chins would I have from the angle of the camera when the baby sat on my chest post-section?! How would my squeamish husband hold his shit together when my insides were basically sat on top of a table?! Uggghhhh.

In the end, I had the c-section, and let’s be honest, it was nothing short of a military medical operation. But, it was the safest option for me and my baby, and was very successful. There were triple chin photos galore!

There’s no one-size-fits-all for parenthood, let alone with a disability or two in tow. Workarounds become routine.

Social media, shop fronts and mum and baby magazines all gave me a false image of how my experience of motherhood was going to happen. There was no one there to tell me or prepare me for the adjustments we would have to make for our family to work.

I have a condition called Dysautonomia which is a dysfunction in the autonomic nervous system. As part of that, I suffer with a condition called PoTS (Postural Orthostatic Tachycardia Syndrome). This means that every time I get up from lying down or stand up from sitting down, my heart rate elevates to a really high level and I get very dizzy and unstable. This meant that when my baby cried in the night, or needed me to go from a change in position I’d have to do it very slowly and very carefully – especially when holding my babe. I lived in constant fear of dropping my baby. I would have my husband carry my son from the bedroom to the lounge and place him in the moses basket for me first thing in the morning until I could take my medication and gain some control over my heart rate; but I was still constantly terrified.

I then adapted pacing. I did everything every other parent does when holding and moving around with their child, except at a similar pace to a snail. As a result, life has been in serious slooooooow moooooo for us… but it’s kept my son safe in my arms for his entire little life.

Disabled parking arguments don’t just end because there’s a baby on board.

Ah, every person with a chronic illness or invisible disability knows it: people look twice when you park in a disabled spot, and some even challenge you over it. Having to ‘prove’ or justify yourself to anyone is fucking horrible, but it still happens even in front of young ears. Pre-COVID, I drove to the supermarket with my son and parked in a disabled bay as it was closer to the shop door than the parent-and-child bays – but almost immediately I was approached by a member of the public and told to move. When I explained that I was within my rights to park there as a disabled person with the relevant permit, they told me I looked ‘normal’ (!) and even went on to ask what my disability was.

Carrying a child puts additional strain and pressure on my already weakened and often dislocated joints. Just walking can make me feel as though I’m in pain not dissimilar to the shock of wading through ice cold water, and that’s without my added cardiac issues that result in intense pain and pressure when I’m upright. I guess, put simply: just don’t ask mothers why they’re in a disabled space over another. I get approached ALL THE TIME and it’s really no one’s fucking business but mine.

Feeling a degree of mum guilt is normal but prepare for more than most.

When I see videos online of parents running with their children, spinning them around, holding them tight, I can’t help but feel a sense of guilt that I probably won’t be able to do that with my son. This often quickly turns into resentment because other mums can do shit I can’t, before the rational part of me settles my over-working mind.

We can still be as happy, as fun and have silly times but just in different ways or slightly adjusted ways.

Your kid/s will spend a lot of time in medical settings, even if they’re perfectly healthy and/or non-disabled.

I hadn’t considered how often I’d have to take my son to hospital with me for follow ups, appointments and everything else I do as standard. At the time of writing, everything is accessible for me from home due to the coronavirus pandemic but before this I would find myself overwhelmed with guilt and sadness that my excited-looking baby was snuggled into his car seat assuming he’s going somewhere fun … only to be presented in a cold and noisy hospital listening to his mum talk a weird language with a complete stranger every week.

The mum guilt was REAL and the more appointments I attended and the older my son got, the harder I found it fighting the tears of guilt for him. I didn’t want to take him to hospitals, I wanted to take him anywhere bloody else, and of course, he has limited understanding of who I am yet surrounding my health. I could never have imagined feeling guilt and sadness surrounding something I find so normal.

Well, thank fuck for grandparents. We created a time where my son’s grandparents got to completely spoil him for half a day with their love, cuddles and an abundance of outdoors adventures while I disappeared to sort all my medical shit stuff out alone. I finally felt like I could manage and the mum guilt lessened just disappeared. I had found a balance and that’s what so much of mum life is about!

Being a mum with disabilities is doable. And it’s worth it.

I always knew my life wouldn’t be the same as those perfect looking mums on social media, in magazines and on the telly. I just didn’t realise how quickly I’d have to adapt but also how easy I’d find things once we adapted. We now live a life that works well for us. No one else really knows what’s happening behind our closed doors because we have a very natural way of living – it’s only when you look a little closer you realise we do some things just slightly differently.

Being a mum with disabilities is not impossible. I won’t lie: it can be stressful and emotional learning your capabilities but once you have them mastered, you become a parent with disabilities in a type of art form.

What works for one person may not work for you. It’s about experimenting with options and finding what helps you. I don’t want any other parents to feel any shame surrounding adapting parenthood because I experienced that shame and as quickly as it came, it went (once I had a stern word with myself and worked to get around it!). Never be ashamed of your disabilities, your ability to parent or the way you live or parent. Everyone is different… and how fucking boring would life be if we were all the bloody same?”

The header image at the top of this post was taken by Kira auf der Heider, for Unsplash.