Last week, I had a super-aggravating experience related to what my husband, Joe, and I jokingly refer to as one of my “fibro super powers.” But luckily, it ended in the kind of validation I think we all need.

 

woman on a megaphone

Every sound is so loud!

Since I developed fibromyalgia 20 years ago, I have become extra-sensitive to everything—especially sound. I remember those first years post-diagnosis, when I would get frustrated about the sounds my neighbors made. I found myself plugging my ears every time an ambulance or fire truck went by, and started carrying ear plugs to wear whenever I traveled. And it’s not just the sound itself; the bass of loud music or trucks going by is also really tough on my system. And when you live in a huge city, it’s hard to escape. My amazing hearing is a terrible “super power” to have!

But no one around me seemed to experience the same sensitivity; in fact, when I would complain about the issue to people I was close to, I was mostly met with blank stares, or flat-out negation. “I don’t hear it, so I think you’re imagining it,” my ex would say. “It can’t be that loud if I can’t hear it, so can you just ignore it?” he would ask. Um, no. He certainly was not the only person to minimize or deny my experience; co-workers, friends, and family all did the same thing.

That negation was not intentional, I’m sure; I know that none of the people who did it was actively trying to hurt me. But wow, did it hurt. I learned to keep my mouth shut, even when it was causing me extreme distress. Sometimes, I would curl up in a ball in bed, with piles of covers over me, ear plugs in my ears, and just cry. It wasn’t just the constant negative sensation of the rock music from upstairs, or the nagging hum of the truck idling outside my window. The thing that hurt most was when people would shut down my concern or negate my experience.

Experiencing validation from my community

Recently, I attended a retreat for women with chronic pain. Spending a weekend with a handful of women who immediately “get” your experience is powerful. During one conversation, I discovered that at least two other people there with fibromyalgia or other chronic pain conditions also live with the intense sound experiences that I have. It was amazing—I mean, I was literally amazed by how good it felt—to be heard, and to experience validation.

Just knowing that someone understood my experience, and told me it was okay to be upset by it, made me feel like less of a freak.

headphones

My hero…on a step ladder

The place where I’m most bothered by nagging sounds is my home. The upstairs neighbors love to have loud phone conversations in the room above my home office, so I keep ear plugs on my desk. Our bedroom faces an alley, and I’ve learned to accept that I hear trash trucks every morning.

But one sound was making me feel CRAZY the other day. It was an insistent chirp chirp, like the sound of a smoke detector that wants you to know its batteries are low. It went on for two days, and it wasn’t in our condo, but it was loud enough i could hear it all the time. But Joe couldn’t hear it, unless he strained really hard. Still, he reached out to the neighbors whose places are adjacent to see if they heard it. They both said no. “It’s got to be in the basement then,” I said, but Joe thought there was no way there was a smoke detector down there.

I walked across the hall and asked my neighbor if they could hear it. “No, there’s no sound,” my neighbor said. “Maybe it’s a cat!” he said, laughing, as he shut his door. Hmmmm rhythmically beeping every 45 seconds? Nope, definitely not a cat. I mean, have you met cats?

Still, the sound went on…and eventually, Sunday night, I became a weepy mess standing in the kitchen. “I feel like I’m going crazy,” I said to Joe. “I’m not imaging this! But no one else hears it, and no one can do anything about it, and I don’t see how I can work with that in the background tomorrow.”

Joe paused. He cocked his head to the side and listened. Then he silently, slowly, started to pace around the condo, opening cupboards, shining a flashlight into corners, looking for…and listening for…something. This went on for about 20 minutes. “Let’s check the basement,” he said.

A few minutes later, he was downstairs on a step ladder, replacing the battery in a beeping smoke detector in the basement.

 

And then I was a blubbering mess

He came back upstairs and we hugged for a long time. I couldn’t stop crying. It was just a freakin’ smoke detector, but when you have extreme sound sensitivity and that beeping goes on for days, it can really mess with your head. I felt so relieved that he heard me and understood me—and thankful that even though the sound wasn’t bothering him, he put on his detective cap and helped me solve it.

I had no idea how much I needed that feeling of validation. When we live with invisible illness, we feel just that way: Invisible. Unimportant. Complain-y. Whiney. Misunderstood. Ignored. It can pile up and make us feel unworthy of care and support.

Today, I’m thankful for the relative quiet in my home office. And thankful for Joe, and his willingness to care for me in the way I need it. It makes me want to care even more for him, too; it makes me feel less alone with my disease experience. And it reminds me that there are people in our lives who understand, or at least respect our experience.

 

Do you have a hero?

I would love to hear if you’ve had a similar experience. We hear so much negative stuff about relationships that go sour when one or both people have illness. If you have a positive story to share about someone in your life who shows respect, understanding, and validation, I would love to hear it. Share it in the comments below, okay?

 

P.S. did you know I write about relationships in my book, ChronicBabe 101: How to Craft an Incredible Life Beyond Illness? I do! If you want to build stronger relationships and become a stronger advocate for yourself, I encourage you to grab your copy today. xo!