There isn’t much bandwidth left to think about anything but coronavirus at the moment — I understand that, really I do. But did you know that March is also Endometriosis Awareness Month? That this condition affects 200 million women worldwide, 1.6 million in the UK alone? That it’s as common as arthritis and asthma? That there’s no cure, the research is woefully underfunded and there aren’t enough specialists? It affects one in 10 women, so you definitely know someone with it, even if you don’t realise it yet. What none of us knew until now is that my experience with “women’s problems” may be useful for everyone in this uncertain and weird time.
Endometriosis is a condition where tissue similar to the lining of the womb grows in and around the reproductive and abdominal organs, sticking them together or causing cysts. Some people with the condition can relatively normal lives, while for others it can be incredibly painful, difficult to manage, affect fertility and have an impact on your quality of life — in my case it can sometimes be totally debilitating.
Since I was diagnosed at seventeen I’ve had 10 operations (surgery is the only way to definitively diagnose and remove disease), a pseudo-menopause treatment, a breast cancer treatment and many hormonal medicines in an attempt to slow the growth of the disease.
I have an extreme version but sadly I’m not as rare as you’d think. It takes an average of seven to 10 years to get a diagnosis. This is partly because women are often led up the wrong (lady) garden path medically: they’re often old that it’s IBS, just bad periods or and or that it’s all in their heads.
As a writer I have times when I don’t interact much with the outside world, but endometriosis flare-ups can lead to many days where I don’t leave the house at all. It’s difficult, lonely, and sometimes it feels overwhelming, but over the last 23 years I’ve learnt tricks galore to manage mental health and perfected the art of what one does during house arrest.
So, during this universal time of lockdown where many of us are self-isolating, I thought I’d share some things that have helped me to stay sane, positive and calm. Finally endometriosis might have some use for us all!
Everything I’m looking forward to is cancelled. It’s normal to feel disappointed — even if it seems trivial in the grand scheme of things. Talk about it, shout and scream, punch a pillow and then make new plans. Think of what you’ll do when this is over, what adventures you’ll have when we can be together again.
Psychologically reframe it. As soon as you feel you’re ‘not allowed’ to do things, you will resist and push back. Instead, think of the distancing as a gift of time; to reflect, reassess and do things you’ve been putting off.
Breathe. Anxiety and stress cause our breath to become shallow and restricted. To re-regulate, inhale through your nose and exhale through your mouth for three beats, each breath slower and deeper than before.
You need routine. Always get dressed: even the switch into slouchy clothes separates day from night. Don’t sleep all the time. Structure your work/home day — it’s amazing how washing/cleaning/sorting eats away at your time.
“Cling tight to the people you love — even if it’s digitally for the moment — keep going at a slower pace and remember nothing lasts forever.”
Make a list. It gives you some control, orders your thoughts and reduces panic when you feel like you’ve run out of ideas. It’s a ‘Here’s a list I made earlier for myself list’. Fill it with things you have to do, then what you’d like to do, and then what you would love to do but haven’t because you’re too busy or scared to try.
Create something that wasn’t here when you woke up. Knit, paint, draw, write. Clear out your clothes, make-up and toiletries. Make piles for charity and storage. Perfect your smoky eyes without worry that you’ll look like a panda for the first 15 goes. Do an online class, learn something new. Do things where you can track your progress.
Activities. Sing and dance like nobody is watching because, well, they aren’t. Do your own Desert Island Discs: make a communal playlist. Watch box sets/films, read, listen to that podcast/audiobook/radio show you’ve been storing up. Anything that brings the outside inside for a bit is vital. If you’re worried about money, share subscriptions with family and friends.
Exercise. Yoga, weights, online classes. (Dance Queen Oti Mabuse is doing classes on Instagram/YouTube.)
Cook and bake. Make batch meals and freeze: it helps with anxiety about food but also you’ll have a quick meal ready if you do get sick.
Combat the loneliness. FaceTime, Zoom and Skype, Houseparty, phone, message, share photos, jokes and recommended stuff.
Allocate time to watch news, talk about it, check social media. It reduces anxiety to segment this, rather than have it as a constant background to your life.
Acknowledge thoughts and feelings. ‘What if’ and ‘catastrophic thinking’ at the moment are normal, but try to remain in the present. Don’t drift into the past or future because you cannot control either. Break the cycle — distractions help to combat this.
Sometimes it’s the little things that get you through: nice food, hot showers, long baths.
My biggest advice is to try to look for the good bits. Cling tight to the people you love — even if it’s digitally for the moment — keep going at a slower pace and remember nothing lasts forever. We really are in this together, and that’s something to hold on to.
Eleanor Thom is a comedian, writer and author of Private Parts, a funny, feminist memoir about what it’s like to really live with endometriosis