When this pandemic first started becoming the anxious invasion in our lives that we now know it as, everyone was wondering if they’d be able to keep working, if that holiday they booked would go ahead and if they’d still be going to the party they’d been looking forward to all month. We didn’t know when all plans might be cancelled and for how long. This uncertainty is a constant in the life of people living with unpredictable chronic illness.
My life is a succession of cancelled plans and new adjustments to fit around new symptoms. I suffer from endometriosis, a disease where cells like the lining of your uterus grow in other parts of your body, most commonly the pelvis and on organs in that area, but some cases spread to other areas of the body such as the lungs. It’s an incredibly painful, life altering disease that has more symptoms than I can count and effects 10% of women in the UK. Flare ups can happen when you least expect them and just when you think your in control, a new kind of pain or wave of symptoms can swoop in and take that away from you. Whenever I have big plans or work projects the excitement is met with the anxiety that I might not be well enough to be there or for fill my role. I do my best to look after myself, but no amount of celery and yoga is going to get rid of my illness or stop this uncertainty.
So many of us are now feeling the repercussions of not knowing what’s happening next and being unable to plan for the future is having on our mental health. The way I get through this in everyday life is trying to take things day by day. If I feel well - great, today is a good day to get stuff done. If I don’t feel well - moan for a bit then get in the bath, catch up on EastEnders and wait it out (a good piece of advice for any situation, I feel).
I have not mastered this though, because there is something that regularly gets in the way. Guilt. Raise your hand if you have ever felt victimised by the ‘I’m not being productive enough’ guilt? *Insert Mean Girls meme here*. The lockdown has had us all feeling like we should be learning Mandarin and doing online courses in project management. When we don’t have the capacity for this, guilt takes the place of productivity. Likewise, when I’m having a flare up, especially one that lasts longer than I can keep refilling my bath, I feel guilty and useless. It’s a hard feeling to shake but it’s also totally pointless. We’re not going to feel better or be able to feel more productive if we kick ourselves for needing rest during a bout of illness or GLOBAL FUCKING PANDEMIC. It’s still there though isn’t it? Right in the bottom of your belly and the back of your throat. If anyone has any tips on how to get rid of that last little bit, please let me know.
People are learning new ways of working from home but bed desks and ‘working baths’ have been a thing for chronic illness sufferers since the first time they couldn’t make it to school or realised a bus trip to work might result in an ambulance trip home. The lockdown comes with the shared sense that ‘we are all in this together’. Before this, for people whom this is the norm, weeks cooped up at home, feeling disconnected and mentally strained were incredibly lonely. I hope that in a years’ time, when us lot still have to cancel on you and need help getting to the shops, you’ll remember how shit that feels and you’ll reach out to your mate who’s still in the bath watching Phil Mitchell try win Sharon back.