the emotional labor of pain

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Physical pain is emotionally draining. I think sometimes people don’t understand that. When your body is clawing at and punching itself and your brain is sending signals every second to cope with each wave that comes, it is literally exhausting. When the pain is so bad you bite your own fingers to the point of leaving marks or bruises simply to focus on a different area of pain for even a second—it feels like each second is torture. If and when the pain leaves or at least becomes less intense, or before it intensifies again, you are left feeling like you climbed a mountain or ran a marathon. You are sore and tired and aching. But your mind is also sore and tired and aching. When the physical pain subsides, the mind still goes; which is when I take to writing it all down, letting it out.

As someone who experiences chronic pain, I know firsthand how those of us with illness blame ourselves for what we’re experiencing. When my body is writhing in pain and nothing will stop it, my thoughts are a chaotic mess, not just of wishing the pain away, but interrogating myself: why is this happening to me, why won’t it stop, what did I do wrong this month to cause this, did I eat something bad, did I not move my body enough, should I have done more self-massage, how did I get like this, when will my body learn to protect me, why does my body hate me. It spirals out of control while I’m trying to breathe and simply make it to the next moment, desperate for relief.

But even the months when you do what you or others consider as “everything right,” (whatever that means), your body still betrays you, and you’re back to torturing yourself with the idea that you just need to be more perfect and then this will all stop. So you spend hours calculating your exact game plan for the next month, crossing fingers it will work this time, punishing yourself mentally for not being good enough to conquer something unconquerable, to control something out of your control.

On top of all this guilt is more guilt. Wondering if anyone truly believes you, because yesterday you were laughing and moving and seemed fine, is it all an act? Wishing you could keep your commitments and responsibilities and not burden your coworkers who you know are already extremely busy and burnt out themselves. Worrying that you are too much for your spouse, hard to love in these hours when every breathless utterance of “fuck” is a prayer to the universe for mercy. Feeling shameful for not being an easy person to deal with, employ, befriend, count on. Feeling like a burden to ask empathy of those in your sphere month after month after month. When will they get tired of holding space for you?

Tangled up with guilt is the feeling of being misunderstood. By doctors who want you to pop pills that give you other horrible symptoms like IBS and severe depression and a compromised immune system and no libido—pills that will eventually stop working, anyway, after they’ve ruined your gut beyond repair; or who encourage expensive, time-consuming surgeries that would create scar tissue that may cause even more pain and increase your risk of other reproductive issues, eventually leading to a hysterectomy. By friends who think you aren’t even “trying” to “fix” it because your focus is on holistic solutions instead of Western band-aid care.

But how can anyone else decide which existence is better for you? This one, or the one where your gut is always upset and you catch every cold and flu that comes around? This one, or the one where you have post-op fistulas that cause constant pain even when using the restroom? What sounds worse: endometriosis that leaves you bed-ridden with labor-like pain contractions for 3 days a month, or a partial colectomy that leaves you with recurrent bowel obstructions that require surgery each time?

You question your own sanity. Are you weak, is it all in your head? Does the pain still count today if it comes every few hours, or only if it lasts for several? On a scale of 1-10 with 10 being call an ambulance, does the pain have to be above a 3, or a 6, for it to be acceptable to work from home? Are you allowed to feel better when the pain is finally gone, or do you have to be a martyr for the disease? Can you still find beauty in the tiny moments to find the strength to keep going?

The shitty part is: there are no answers. For chronic pain, for invisible illnesses, much is unexplainable. Which makes your existence feel exhausting, because even when you feel good, it’s in the back of your mind, taunting you, threatening you. And the more power you give it, the less joy you can cultivate in your life.

I may never gain power over this pain physically; but writing about it helps me gain power over it emotionally. It’s therapy, for me, and I hope for others dealing with endometriosis. Words help us heal, and they also help others hear. We need both if we’re going to survive.