A cascade of precise cellular interactions

I cried big fat tears at work today.

It was lunch time and this article popped up on my Twitter feed:

What’s Wrong With Me?: I had an autoimmune disease. Then the disease had me.

The article is all-around beautifully written. It was when I got to this bit, though:

It wasn’t just that I suffered brain fog (a usual autoimmune symptom); and it wasn’t just the “loss of self” that sociologists talk about in connection with chronic illness, where everything you know about yourself disappears, and you have to build a different life. It was that I no longer had the sense that I was a distinct person. Taking the subway to N.Y.U., where I taught, I felt like a mechanism that moved arduously through the world, simply trying to complete its tasks. Sitting upright at my father’s birthday dinner required a huge act of will. 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.

To be sick in this way is to have the unpleasant feeling 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.

…that the tears started.

Tears of relief to have my experience articulated so perfectly. Of hopelessness at the reality that this is my life right now. Of frustration that there isn’t more known about this type of chronic illness. Of loneliness – because dealing with chronic illness is fucking lonely at times. Of relief that there is at least one more person in the world who knows I’m feeling this way not because of something in my head or because I’m not trying hard enough.

The worst part of all of this for me, outside of the shear physical toll it’s all taking on my body, is the constant and heavy feeling of loss. Loss of the person I used to be. Loss of my body autonomy. Loss of my fitness that I’d worked so hard for. Loss of my optimistic and positive frame of mind. Loss of faith from the people around me. Loss of friendship from the people I’ve shut out of my life. Loss of self-esteem and confidence. Loss of my previous sense of direction for myself and my life.

And if you’re a person that applies themselves and works hard and historically has just tried to get on with things, it can be really hard to articulate out loud how bad things are. The fatigue turns into ‘my energy levels are a bit low today’. The brain fog turns into ‘I’m a bit scattered today don’t mind me’. You play down the daily struggle to a whole bunch of ‘oh silly me’ anecdotes.

And you try to not die a little on the inside every time someone tells you they know how to fix it. If only you exercised more, exercised less, managed your stress, pushed yourself a little harder, was a little easier on yourself, drank this kind of milk, cut out this kind of food, took this kind of supplement, prayed to Jesus (yes, really), it would get better.

There’s hope in the article though. And with all of it. If there wasn’t, I wouldn’t be going to my PT session in the morning. I wouldn’t be trying to struggle through my new gym program. I wouldn’t be writing here. And there are a whole lot of other delicious foods I would be eating.

I do have hope that it gets better than this, and I just need to hang in there until it does.

Tonight I’m grateful for Meghan O’Rourke, and this article she wrote. It opened up something inside of me today.

A positive thing about myself today: I turn 42 tomorrow and I don’t even mind.

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