I’m not sure if you caught Meghan O’Rourke’s essay What’s Wrong With Me in a recent issue of New Yorker? It shines a spotlight on what it’s like to live with autoimmune disease. Totally pervy stuff for us AI folk.

Image via
Image via Oyster magazine

I read it. I read it again. And I wept. You know that kind of weeping that is all about the sheer relief of having connected after not realising you felt so, so, so alone? Or of having recognised a part of yourself in another, of feeling the enormity of it all, and finding that this is somehow comforting. The bigness – and one’s own smallness and individual pain – is exponentially comforting. Oddly enough.

Of course, weeping is one of the 2938747 side effects of thyroid disease. And connecting with other sufferers is the most soothing respite we AI-ers can draw on. Ain’t that a fact. (As always, at this juncture, I ask anyone reding this who doesn’t have an AI to  a) read on regardless as any AI insights can be extrapolated out to the meta population’s health and b) pass this to any loved ones with an AI.)

For those of you without a New Yorker account, I’m going to a) suggest you subscribe even just to read this article and then b) outline the bits that I was compelled to underline for those of you who only like highlights. I’m good like that! I’ve added in my own experiences and observations, too.

1. It can feel like depression… but not. “I wondered if I was depressed. But I wanted to work,” writes O’Rourke. “I didn’t feel apathy, only a weird sense that my mind and my body weren’t synched.” Shit! I get this. Let’s break it down…

2. Work is OK. The rest is hard. Of all the commitments in my life, working is the only one I can deal with when my thyroid folds. But only when I can shut out (oh, I hate that this is so…) people and other “complications”. It’s two things. First, in times of desperation (like when I have to do TV or speak to a group), adrenalin will kick in and dull AI symptoms. And I get through. Adrenalin trumps AI symptoms, but longterm this equation is a recipe for disaster as adrenalin acerbates AI.

Second, while AI causes brain fog, this can actually work to shut out distractions. With extra effort (which AI sufferers are good at), a singular focus can be kept. I’ve written before how pain and “fending” can make me really present.

(PS I’m writing this post in the midst of an AI flare. I’m hurting like hell. But I’m able to focus and write and get down and dirty with you all.)

3. You feel distant from yourself…”not synched”. This is the bit where I really cried. Like, wailed. For O’Rourke’s description so, so, so neatly sums up something I’d assumed was just me being neurotic. I recognised a part of myself and the bigness – and my smallness – felt so, so, so deep. “To be sick in this way is to have the unpleasant sensation that you are impersonating yourself… When you’re sick the act of living is more act than living.“

Healthy people, as you’re painfully aware, have the luxury of forgetting that our existence depends on a cascade of precise cellular interactions. Not you. 

Oh, indeed. In an AI fug, I feel like I’m both hyperaware of everything about existence, and yet so removed, like I’m in one of those dreams where you’re trying to run through quicksand.

4. The fatigue is unique. AI fatigue is different from a sleep-deprived person’s exhaustion. “The worst part of my fatigue, the one I couldn’t explain to anyone was the loss of an intact sense of self,” O’Rourke writes.

For me, it feels like a completely “alert vagueness”. Like you’re propped up on caffeine after 48 hours of no sleep. Ratty. Distant but hyperaware.

5. Flow is not possible. The fug, the fog, the pain, the…disconnect and hyperawareness makes it impossible. “Normally, absorption in a task – an immersive flow – can lead you to forget that you feel sick, but my fatigue made such a state impossible. “ Again, running through quicksand…it renders effortlessness forever tantalisingly out of reach. You never get traction. You’re always reaching. Just trying to get to stable ground from which you can take a certain, solid step forward.

6. Bruises are a thyroid thing.  “I had nosebleeds and large bruises up and down my legs.” I get the bruises. Not the nosebleeds.

7.  Itching sensations. I don’t get these. O’Rourke’s feel like needles in her back. But I do get…

8.  An unbearable swollen and burning sensation. Mostly on my right side.

The right side seems to be a thyroid thing.

These leave my veins bulging and my skin raw. And phantom nerve twitches on my right side.  As well as…

9. Weird non-growing bits. My toenails don’t grow at all (like 1mm a year), but my fingernails do. Sometimes. All of which are not “typical” thyroid symptoms. Which brings both  O’Rourke and me to conclude…

10. There are no typical thyroid symptoms. Helpful to know? I’m not sure.

To break down point #5 further, sadly…

11. Contact with people hurts. Humans really are too much for me when I’m not good. Why? I don’t know. It’s the accountability, I think. I don’t want to explain myself. I can’t. How can I?

I don’t want to connect, because there’s nothing in my tank with which to provide the social spark.

12. Thyroid drugs can make you worse. O’Rourke gets told to take less medication as the endo seems to think she’s swung to hyperactive from hypoactive thyroiditis. My endo has told me the same. O’Rourke however feels she needs more. And takes more. Does anyone know what’s going on?!

13. Your thyroid hormones can be whacked, but your antibodies normal. And vice versa. Both O’Rourke and I have the former bloods. Which make no sense to the endos.

14. “The nature of AI is to attack in cycles, to ‘flare’”. Oh, yes! Ain’t this the truth. It’s not a linear story, where you get sick, you get worse, then you get better. Done. Nope, it goes in ebbs and flows and flares. The sooner we accept this, the better.

15. AI understanding is “shadowy”. No one knows what’s going on. No doctor knows what they’re on about. “In fact, AI is as much of a medical frontier today as syphilis or tuberculosis was in the nineteenth century”.

16. Cinnamon helps. It stabilises blood sugar. Which is another symptom.

17. Dairy-free kefir (from coconut) also helps, says O’Rourke. I rate the stuff, too.

18. Paleo eating helps as well: “No gluten, no refined sugar, little dairy”. It also helps me.

19. It’s a young chick thing: AI is the leading cause of illness in young women.

20. Finding help takes five years. And an average of five doctors, according to the American Autoimmune Related Disease Association. Shit! I’m not alone!!!

OK. That’s enough for now. I’m going to follow this post up next week with some thoughts on the cure to these crazy symptoms and quirks. Tune back in…Meantime, share your crazy symptoms below. Because recognising ourselves in others does help…

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