It’s not something I really write about (yet?) but I have the genetic condition Ehlers-Danlos Syndrome, which causes amongst other things frequent joint dislocations, pain and fatigue. I’m mostly sort of okay and I look mostly sort of okay, but I can’t do as much as everyone else, and I need to rest and take recovery time fairly regularly.
Which is fine, and over the years I’ve learned by trial and error how to do this and still lead a mainly normalish life. I am extraordinarily fortunate to have a job I can do from my sofa in pyjamas, that can accommodate both the ‘absolutely cannot go out’ days (that’ll be writing days) and the ‘actually feeling pretty good and want to go and pretend to be normal’ days (let’s schedule some meetings and rehearsal room visits heyho!) and which enables me to take time off without anyone’s permission when I need it. It’s a huge privilege and one I wish all disabled/chronically ill people had.
And yet, and yet, and yet…
Sometimes finding that balance can be incredibly hard, because your body lies to you. Your brain lies to you.
In the past I struggled quite badly with agoraphobia. I don’t know why, whether it was organic, or a side effect of depression, or whether a rather severe EDS relapse triggered it.
I feel like I have to constantly negotiate a fine line between caring for my physical needs, and my emotional needs.
As my writing career has gone from strength to strength (and heaven thank whatever wonderful thing I did in a past life for that), I’ve been busier than I ever have been. Which is wonderful, but it’s hard to resist the temptation to say yes to everything, and sometimes looking at my packed schedule makes me panicky about whether my physical health will hold out. Finding a line between what limits I need to impose for the genuine good of my physical health, and not letting my lizard brain talk myself into believing I can’t manage something out of fear, is a challenge.
I don’t know why, but out of all the mistakes I’ve made and no doubt will continue to make, nothing makes me feel like more of a fuck up than deciding I “can’t” go to something I’d otherwise been looking forward to (“you’ll be too exhausted” “it’s important to conserve your energy” “if you stay in you’ll get lots of writing done” “if you go it will be crowded and horrible). I know a lot of people love cancelling plans, but I’m so weirdly intransigent that I genuinely don’t say yes to social events unless I really want to.
I’ve read enough articles on the FoMo (Fear of Missing out) phenomena* to think it’s Hipster Nonsense**. And it feels so whiny and self-indulgent to cry about choosing not to go to some party or theatre event and then regretting it. But I think about everything I’ve missed or that illness has stolen from me over the years, and what’s most exhausting is the constant responsibility for ‘Spoons’ self-policing.***
I could write a whole other post about feeling othered and the difficulties of practising self-care in an area of an industry that tends to skew pretty young (well, ‘up and coming’ or ’emerging’ playwrights and theatre-makers tend to be young) and being surrounded constantly by actors, who tend to have remarkable fitness and stamina. It’s not the worst thing in the world and it’s nothing compared to what so many disabled people live with, but it is awkward and just kind of … wrangly, having to insist on regular healthy meals and a reasonable bedtime when working with a group of 23-yr old actors and theatre-makers who think nothing of springing from ten-hour coach journeys into a full day of rehearsals, eating from vending machines and petrol stations to save money, and drinking all night.
But fundamentally it’s about the question: How do you integrate being a Person with Chronic Illness with just being a Person? How do you integrate your internal person with your external persona, regardless of ability-status?
And if you enjoyed ‘Naomi takes on and completely ignores the point of vaguely trendy pseudo-psych slang from several years ago’, don’t miss my upcoming blog entry on Imposter Syndrome!