Why I'm So Open About My Pain

Yes, I talk about my illnesses… and people sometimes judge me.

I do talk about them. I talk about them a lot. I talk about my pain and what’s happening in my body. I talk about them on social media, in real life, and I do it pretty much anywhere, even if people are not there to read it.

I’m not doing this so you will feel sorry for me.

I’m not doing it so you will pity me.

Sometimes, I’m not even doing it in the hopes of educating someone about an illness they might never have heard of. Although, I do do this in occasion.

I’m not so much doing this for you.

It’s for me.

If I don’t talk about it, I’m just burying it deep down and all that’s going to happen is that I’ll likely end up feeling worse.

I talk about my illnesses; how a migraine can floor me, how fibromyalgia is more than just pain. How hypermobility is more than flexibility. How gastritis (or GERD) can utterly destroy my day, even my week. I talk about them because they are my life.

You talk about your job, post lots of pictures of your kids, discuss how school is being annoying, how your car needs some work. You talk about your life.

That is all I’m doing when I discuss the mish-mash of the physical and mental health conditions that I have. I’m discussing my life. I’m not picking the worst part of my week and talking about it for pity. I’m just discussing what goes on in my life. To me pain has become my normality.

I do keep stuff deemed “icky” away from public places. It’s not deemed polite to discuss gastric issues, but I feel that puts people with them in a very dark place. Suffering with, yet fearing to mention it. This creates a wall between everyone else and yourself, and no matter how much you talk, there is this huge thing that affects things throughout your life.

The pain is never just pain. It never just affects that one thing. It’s like dominoes, all stacked up and you knock one and it just keeps going. It goes through your life affecting things you wouldn’t even think would be related in any way.

This it’s why it’s important that pain and illnesses, especially invisible illnesses, are not kept in this dark hole. They need to be in the light. It’s better if people can understand that you’re in pain, and that you are in constant pain.

No, it won’t vanish with a diet change or yoga. Yes, it permeates every branch, every tributary of our lives.

If I hide it, is it any wonder that people seem to be confused when I can’t go out? They’re confused that I’m not better yet when I know the chance of me miraculously waking up better are not likely. If I keep this wall where I stash my pain, it’s no wonder that people call me lazy or I blame it on myself. I had a friend tell me that their sister accused them of only being ill when she wanted to “get out” of doing something, because the only time she discussed her illness was when she couldn’t do something.

It might annoy some people. They might accuse me of whinging. They might say I’m looking for pity. However I know I’m not. I’m just giving them a glimpse.

I’m standing in this picture, outside no less. Tomorrow I might barely make it out of bed. People around me need to know that just because I had a good day, I’m not cured.

The pain is still there, but I strive to live my life around it. If people know, then maybe people won’t say, “Well, you did it yesterday. Why not now?!”

I know some random people on my Facebook don’t need to know I woke up in pain. But maybe just getting it out, writing it down, maybe it will make me feel better.

I had a friend who told me I made too many pain noises when standing and moving around the house. She suffered from pain herself. She asked me why I did it. Did I want attention? I said, “Nope, no attention.” If I stand and go, “Argh,” it gets it out.

Think of it like a kiai in martial arts; it’s a mixture of correct breathing and confidence. It is a sound that brings your energy into harmony with the situation. Doing moves without it, to some people, makes the move feel stunted. All I might be saying is, “ahhh-oww,” but it’s getting it out, and that helps me.

The physical representation of exclaiming the pain as I stand makes the process of standing just that much easier, just a bit more bearable. Many of the people I have explained this to has felt silly at first but after a while, it helps.

That’s what matters. It helps lessen your pain. It might make someone feel weird, but does pleasing that person who seems insulted at your vocalization of pain more important than something that could make your pain easier to manage?

If they care about you, they shouldn’t mind if you groan a little because it helps you deal with your pain. If talking and voicing your pain results in you feeling less burdened, less bogged down… less alone, that’s what is important and why would anyone want to deny you that?

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