Last week I shared some bits I found interesting in writer Meghan O’Rourke’s essay “What’s Wrong With Me” in New Yorker magazine. She has the same disease as me: hashimotos, with a side order of several other (possibly) related vague autoimmune (AI) conditions. And her insights touched me – and you guys – big time.
But I saved the bit that REALLY grabbed me in the guts for this post.
Have you ever thought you knew Everything about Something, but then you read something that really stopped you in your tracks? It stops you so abruptly because it’s so blindingly obvious. How could I have missed this? A total A-ha! Moment.
In her essay, O’Rourke shares her frustrations about how no one really knows what causes AI, nor what will fix it. It’s “shadowy”, she says. For some it can be a matter of taking the drugs, and off they go to live normal lives. I know lots of folk like this. I’m happy for them. But if, like me and O’Rourke, you let the disease tangle for too long before getting help your clusterf*ck of symptoms won’t be unraveled with one pill. And, so, like me and O’Rourke, you can develop a domino-ed set of other AI conditions.
And so the “morass of uncertainties” twists tighter.
Like me, O’Rourke reaches a point where she’s largely able to manage her disease through diet – no gluten, no sugar, meditation, kefir, avoiding nightshades, etc. etc. I’ve tried it all. And it’s all required to maintain something resembling a normal life when you have a tricky AI.
But, and this is the two points of note:
- She hasn’t been cured as such. The “flares” and cycles continue.
- Her focus on trying to find a cure, and on controlling the AI, has seen her AI control her.
Her A-ha moment comes, however, when her endo delivers blunt news after a “lapse”. Despite her best efforts to control things with her lifestyle habits, she seems to go backwards, causing her to lament, again, that no one knows what the hell is going on. Says the endo to O’Rourke: “This may just be how it’s going to be. You may always feel like you’re eighty per cent.”
Wow. And shit. And tears. And just for good measure, let’s read that again:
You may always feel like you’re eighty per cent.
80 per cent. And that’s at your best. What are the implications of this?
For me, it’s relief and sadness in equal measure. It’s a fact: I’ve not felt beyond 80 per cent – even on my best days – in six years. I’ve grasped and reached and tried in an effort to get beyond this ceiling. One day… one day I’ll feel good again. To think this is actually out of reach for the rest of my life saddens me to the core.
But, to be honest, the simultaneous relief I feel is greater than the sadness. For it gives me a leave pass from trying and reaching so hard. And I can back off.
I realise I have a choice. I can keep being the frustrated, forever reaching “sick” person. Or I can get OK with 80 per cent. And get on with the remaining years of my life.
In more dramatic moments I’ve wondered if it’s worth living if I can’t get back to normal, if I keep failing and lapsing.
But with this slight shift of perspective I can see peace is about accepting “a new normal”.
As O’Rourke says: “You can’t muscle your way through the enervation and malaise of autoimmunity”. You have to ride with it. More than this you have to switch your gallant and brave efforts from trying so bloody hard, to being OK with 80 per cent. This is a noble cause – for us and those around us.
O’Rourke’s endo adds this: “You’re not nuts…We just might not be able to do anything to help you.”
This is OK, too. What do you think?
