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.
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.
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!
Oh Jenni!!! I can so relate to the noise sensitivity!!! You are not alone! Mine has gone on for most of my life and it is maddening!!!
My hero is my husband! Just because he has always believed me and supported me. We’ve been together over 30 years and married for 26. I read a lot about how women who became chronically ill lost their partners. I am so grateful he has stood by my side through all of this insanity! Especially when I make him put his quartz watch in the bathroom when it’s ticking is making me nuts!!
Thanks so much for everything you do!! Much love! Mary Dean
oh i’m so glad your husband is such a champ! how awesome. hugs!
Dear Jenny. So relatable.next doors boiler drives me crazy. I also find that for me sometimes there in no sound. Do you ever get that ? I’ve looked for the same noise in three different houses and realised it is actually in my head. On another note my son who works shifts had his ceiling fitted with sound proofed plasterboard best wishes Linda
oh linda, that has to be so hard! i have had the same sensation of having a sound in my head – occasional tinnitus. it’s so difficult. some people live with it 24/7 – champions.
Oh, jenni- i almost wept reading your post. I am so shut down from many, many years of isolation and all the negatives you mentioned that i just don’t cry. Your words gave me the impetus to continue to be my own fixer and validator. That horrible “void of invalidation” is a killer.
oh babe, i’m sorry. that is so hard. you are allowed to have needs! and you’ll definitely need to drive the bus when it comes to caring for yourself, but… i hope you can find more folks in your life who can support you. even if they’re only online – that’s still real. hugs hugs!
What about the sense of smell! Having a husband who understands but can also be annoyed by my intense sense of smell! I smell it all. We have bottles of vinegar and water in every room. He is my hero and will help stamp out the odors.
oh it’s not bad for me but so many people have that – you are not alone!
My issue with smells doesn’t sound as bad as yours, but I feel ya on this one. I got a super human smeller during my 2nd pregnancy 12 yrs ago, and it never went away!! I often wake up during the night because I smell something. So annoying!!!
Jenny, I can totally relate to sound sensitivity. I used to work in a childcare setting but had to leave because the shrill sound of childrens voices in a classroom was giving me chronic headaches sometimes to the point of getting migraines. I also cannot stand the bass coming from cars. It will actually make me dizzy & nauseous if I am near it for to long. Other sounds that bother me are the volume on the tv or music systems. My husband has been an amazing support. We have been married for almost 37 years. So he knew what I was like before I was diagnosed. He has always told me that he believed me & he does what he can to support me & make me feel better.
Theresa C
theresa, i’m so glad you have good support. i’m sorry that you have to deal with this, too – and i appreciate you validating my experience.
Lol. It’s even more complicated when you have different members of the same family experiencing different super sensitivities, and you have to try to coordinate them. Our son (now 17) has extremely sensitive smell, to the point where he can’t eat normal food (it all tastes like it’s been in the garbage in the sun for a week). I have sensitive smell only to the extent that if I’m trying to eat something savory, and you put a sweet smell in the air, it makes the food taste rancid. Stuff like that. And the sounds… my husband and I are both musical but we don’t do anything like that in the house because our son can’t tolerate it, even with earplugs. He can’t sit in the music part of a church service or a concert, and being in the sanctuary during the sermon is usually a no-go because it’s too loud (even with earplugs). So I soooo relate. And I so relate about not being validated. I have had multitonal bilateral tinnitus for decades, and only recently my husband started having some tinnitus in the left ear and dizziness. He never tried to understand what I was going through until now. I try to be patient with him, but he sees as debilitating something where I lived and worked with far worse for so very long. I’m trying to be the understanding one and kind of bite my tongue for every time I want to say just deal with it and go on. But I hate that he’s going through it all the same. He doesn’t know how to deal with any illness that doesn’t just get better after a few days and is all gone.
oh, that has to be so hard. i hope that your husband catches the compassion bug now and realizes that you’ve been a rock star – and he can learn from your strength! 😉
Jenni-
You are a superhero for being brave enough and vulnerable enough to be real with your man. That was the biggest struggle for me-because I grew up in a “suck it up” house and later an abusive marriage, it took me a long time to be honest with myself first and then with my new partner.
Lyme has made me hypersensitive to sound and lights, but most especially sound. My sweet man honours that sensitivity all the time and last Fri walked me through the perils of a brain MRI-like a jackhammer right by your head. He helped alert the staff and get me some relaxing meds, a wheelchair, earplugs and stayed with me through it all-never once making a hurtful comment. He may not live it but he doesn’t have to to be able to support me. That’s the definition of compassion.
Yet I must say we are all impressed and calling our honeys superheroes, which they are-but it shouldn’t be anything but the norm. Being kind and understanding and supportive to your partner shouldn’t be a superpower. Yet it is. I’m happy you have a superhero to support you, Jenni. We all deserve at least one!
What you wrote: “Being kind and understanding and supportive to your partner shouldn’t be a superpower. Yet it is.” I agree wholeheartedly!…and LET IT BE SO! More and more understanding and compassion for all of us.
yay!
aw thanks, laurie! yes, i was kind of raised that way too, and it takes courage to be vulnerable – but once you establish that trust, it’s so good!
oh an MRI is the worst – i’m sorry you had to go through that! i’m also very glad you have the support you need to make it through. hugs!
For me it is sensitivity to light. The littlest light like the small green on light of my phone will disturb my sleep. I have blackout curtains over closed mini blinds and still need a pillow over my eyes. My husband has grown used to our dark cave and helps me to avoid lights for example he will warn me and make sure I’ve covered my head before turning out bedroom light on.
i love that your husband helps like that – so necessary!