Most of us know that not everyone with an illness or disability has an obvious physical impairment. From London Underground badges (‘please offer me a seat’) to supermarket toilet signs (‘not all disabilities are visible’), there is more awareness of invisible illness than ever before. But what’s it like to live with? To parent with?
Hi, I’m Laura. I’m a stay at home mum whose baby is looked after by other people 3 days a week. My daughter is 15 months old and for the most part, I adore her (unwarranted tantrums notwithstanding!) She’s a chubby, rosy-cheeked bundle of joy and I’m thankful every day that she came into our lives. But she’s bloody hard work. I think we can all put our hands up to owning that feeling! For most people, a glass of wine at the end of the day, a good book, bath and early night and we’re ready to go again in the morning. For people with a chronic illness, invisible or otherwise, this gets more challenging.
The best analogy I’ve come across to help to explain it is to imagine we’re all powered by a battery. Healthy people have a normal sized battery that’s worn down slowly through the course of an average day and replenished when we rest and sleep at night. People like me have a much smaller battery, which is worn down more quickly and needs longer to recharge. A day off should do it. If you have a particularly exciting day planned, you can borrow a bit of tomorrow’s battery, but at some point over the next few days you have to pay that back (cue days of doing very little).
One of the things I’ve enjoyed the most about motherhood is how normalising it is. Suddenly I wasn’t the sick one, the one who doesn’t have a proper job, the odd one out – I was a mum, just like all the other mums! The sense of belonging and camaraderie was a balm to my soul. I’ve been lucky to meet some wonderful new friends, who I’ve talked to about all sorts of things, from pelvic floor to house renovation and back again. But not health talk. Because it’s boring, I say. Well, it kind of is. And I spend so much my life thinking about it (health research, special diets) that my precious social time is far better spent talking about David Tennant, bargain baby clothes or who’s trying for baby number two (spoiler: not me!) than dwelling on how long I’ll need to spend on the couch tomorrow to recover.
Why? Because really, it sucks to be ill. I’d love to be able to do a bit more. Ok, a lot more! But when you’re doing what you can to manage your symptoms it doesn’t help to dwell on the bad stuff. I think there’s also an element of wanting to show the world the best bits of life and gloss over the rest. A bit like social media, where we share the pictures of us looking fabulous on an exotic holiday, and not the ones when we’re up at 4am with the baby and looking like the walking dead. And, if I’m being honest, there’s also a healthy dose of fear. Fear that people won’t get it, assume I’m lazy, work-shy, even hypochondriac, and run for the hills.
I think this is mostly paranoia on my part, because that has generally not been the case. I’m very lucky to have an understanding husband and family, who help out a lot and allow me enough energy to be the best mum that I can on the days when I’m looking after the baby. On those days I seem healthy, joining in baby yoga, walking to the park and getting out and about like a normal mum. But there is usually a day-to-day malaise, even when I’m happy, active (ish – you won’t find me at the gym!) and look well. The days my symptoms are worse and I’m achy, foggy and not really functioning, I stay at home until I’m less like a bear with a sore head.
One of the things I’ve been wondering recently is whether by not talking about it I’m contributing to the problem? Probably. So consider this an attempt to make up for that by sharing my experience and hopefully shedding some light on invisible illness.
Here are a few nuggets of wisdom I’ve gleaned along the way.
1. It’s ok to ask for help. Just because it’s your baby doesn’t mean you’ve got to cope single-handedly at all times. I have help from my husband, mum, mother-in-law, and friends, Eleanor goes to nursery two days a week, and we have a cleaner.
2. Don’t feel guilty! About asking for help, about the things you’re doing, or not doing. It’s so easy to do and such a waste of time. We’re all doing our best, and that’s good enough.
3. Do what works! Ditch the manuals and well-meaning advice and do what works for you and your family.
4. Enjoy the little things. That smile, giggle, their first attempts at crawling and standing, sunny days in the garden, the 100th reading of the Gruffalo…
A Guest Blog from Laura Seaton
Laura is 34 and lives in Cheltenham with her husband and baby daughter. She has Hashimotos Hypothyroidism (an autoimmune disease) and Myalgic Encephalomyelitis (M.E.) She loves to grow plants, take photos and enjoy the simple things. You can follow her on Instagram.