I should wear my hearing aid in my right ear.
That’s the sentence I always start with.
Not I do.
Not I can.
Just… I should.
A few years ago, when I was immunocompromised, what everyone thought was a massive ear infection turned into a bit of a medical nightmare. Round after round of antibiotics. My body absolutely hammered. At one point, I was genuinely close to sepsis. It was terrifying, exhausting, and confusing — especially when nothing seemed to be working.
Then an incredible audiologist paused, looked at the bigger picture, and said the words no one else had considered: “This isn’t an infection. This is your fibromyalgia having a full-scale revolt.”
And suddenly… it all made sense.
Fibro is a double whammy like that. It doesn’t just cause pain — it sends your body into dramatic, over-enthusiastic responses to things that aren’t actually threats. Inflammation where there shouldn’t be. Symptoms that mimic something far more sinister. Panic layered on top of already fragile systems.
Last summer was another reminder.
Out of nowhere, I developed a rash across my upper torso. It felt like sandpaper and looked like chickenpox had a baby with something unnamed and angry. No cream worked. No treatment shifted it. And then, just as mysteriously as it arrived… poof. Flare over. Gone. Fibro logic.
Which brings me back to my hearing aid. Technically, it helps. Clinically, it’s the right thing to do. But practically? Sensory-wise? Neurologically? It’s… a lot. The shift from small, contained spaces into open environments becomes discombobulating. My brain doesn’t just hear sounds — it fixates on them. The hum of lights. Background chatter. Cutlery. Shoes on floors. All of it suddenly amplified and competing for attention. Add masking on top of that, and what should be supportive becomes overwhelming.
So I adapted.
I face people when they speak.
I watch lips.
I read expressions.
I fill in gaps using context and intuition.
And yes — I say “huh?!” far more than is probably polite.
I know that likely annoys people.
I know it can look like I’m not listening, when actually I’m concentrating incredibly hard.
But adaptation isn’t failure.
And choosing what keeps me regulated isn’t giving up — it’s self-preservation. Maybe one day I’ll wear my hearing aid more consistently. Maybe my tolerance will shift. Maybe technology will catch up with bodies like mine. Until then, I’ll keep listening in the ways that work for me — with my eyes, my presence, my patience, and my honesty. And if I say “sorry, can you repeat that?”
Please know it’s not because I don’t care. It’s because I care enough to really hear you — even if I have to do it a little differently. 💛