The Sentence That Enabled Me to Share My Chronic Pain Story

As someone with chronic pain, I regularly hear things like, “But you don’t look sick,” or, “It can’t be that bad,” coming from people who don’t see what I go through on a daily basis. I have had people tell me they saw me walking and then sit down in my wheelchair, so I clearly don’t need it. I’ve had others tell me that I’m only doing it to avoid working, when all I want to do is be able to at least work part-time and have that social aspect of things again. Being a full-time patient with a list of chronic pain conditions, Asperger’s, complex post-traumatic stress disorder, anxiety and depression, is not how I envisioned spending my 30s, I can tell you that.

But then, in an email from a friend recently, when we were discussing my medication options, my pain relief options, and what I can possibly do to make things better made my heart soar. She said one little sentence that I wish others would say:

“I can’t begin to understand your pain.”

That one sentence meant the world to me. Why? Because it means she gets it. She understands that she can’t possibly know what it’s like to have pain 24 hours a day, seven days a week. But she wants to know how she can help me. She wants to know if there’s anything she can do. Even if it’s just listening to me. That means more to me than anything else she cold have said in that moment. There was no judgement, no criticism, just a validation of what I deal with. Anyone in the chronic pain community will tell you how rare that is.

It was that conversation that led me to writing a long, public Facebook status about the realities of living with fibromyalgia for the friends who don’t have it. So they can try to understand a little better. The below is taken from that post:

Want to know what fibro feels like? Ever had a tattoo? That constant scratching pain? Imagine that pain in every muscle in your body. In every part of every muscle. Constantly. Unrelenting. It doesn’t stop. There is no limit on that pain. It dials up, it can dial down, but it doesn’t stop. Now, throw in the joint pain that can go with it. It might just be the fibro, but it could be another condition.

It feels like knives being dug into your wrists, ankles and knuckles – hammers being beat against your hips and knees. Some days you face all this whilst wading through a thick and gelatinous fog that resides within your brain. You can’t remember the word for “coffee” because it just doesn’t register. So you end up asking for “not tea” and pray that the person you’re with understands you. You need something from another room but you can’t remember its name and you get frustrated because the thing from the thing should be the lip balm on the bedside table. You need to go to the shop to buy bread. It becomes “we need the stuff to make the toast with.”

There are a million different things you NEED to get done, but the pain won’t let you leave the bed or the couch. Your brain can’t even begin to make sense of what you have to do, even with the list in front of you. All you want to do is crawl back into bed. But sleep won’t solve this, and you can’t sleep anyway. You are in constant fight or flight mode. Your body no longer knows how to relax as the nerve endings misfire and send the wrong signals to the brain which in turn sends back the wrong instructions. You are constantly and perpetually exhausted.

The good days feel almost like the days before this all began. Because you can do more. You get more done, and you have more energy. You almost forget you’re ill. But the day after, or a few days after when the bad days start again, you realize that you did too much and didn’t pace yourself. You did too much. And this time it’s worse than before.

So, to that friend – thank you. Thank you for saying those words. Because you enabled me to share with the world just a part of what this pain is like. What this life is like. You’ve enabled me to show my family, who often don’t believe that chronic pain is a thing, what I go through each and every day.

I’ve said it before, and I’ll say it again. You really are my angel.

Getty Image by jacoblund

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