Navigating Hearing Loss & EDS: The Unexpected Journey of Lip-Reading, Music, and Adaptation

Hearing loss is often imagined as a sudden, dramatic event—one day you hear, the next you don’t. But for many of us, it’s a slow, creeping change, a background process we don’t fully grasp until someone—usually an exasperated loved one—points out that we’ve been nodding along to nonsense for years.

For me, that moment of realization came courtesy of my partner, Sam, who grew increasingly frustrated that I wasn’t responding when he spoke. Picture the scene: I’d be in the kitchen, focused on cooking, only to turn around and find him standing there, hands on hips, giving me a look that said, Are you even listening? An acknowledgment would be nice. This, by the way, is pure torture for his beautifully autistic brain—repetition is like nails on a chalkboard to him.

So off I went for a hearing test, expecting to be told I was just a little hard of hearing. Instead, I was diagnosed with degenerative hearing loss in both ears and told I needed hearing aids. It was one of those moments where the doctor tells you something life-changing, and your first reaction is, Wait… so you mean I don’t have to fight to be taken seriously for once? Weird.

What I didn't initially connect was how my hearing loss might relate to another unwelcome guest in my life—Ehlers-Danlos Syndrome (EDS). Turns out, this delightful genetic disorder, known for messing with joints, connective tissues, and generally making life more complicated, can also impact hearing. Research indicates that those of us lucky enough to have EDS often experience auditory issues due to the connective tissue dysfunction affecting tiny structures within the ear. In short, EDS isn't just content ruining your knees and wrists—it wants in on your ears, too.

[Source: Ehlers-Danlos Society - https://www.ehlers-danlos.com/associated-symptoms/]

The World Turns Up to Eleven

When I first put in my hearing aids, I was absolutely shocked by how much sound I had been missing. It was like getting glasses for the first time and realizing that trees actually have individual leaves, not just green smudges. Suddenly, everything was louder, sharper—more overwhelming. At my niece’s birthday party, filled with sugar-fueled, screaming under-fives, the hearing aids came right out. Who knew hearing loss had its perks?

The Heartbreak of Music

Of all the adjustments, losing my ability to play music was the hardest. I played the piano and ukulele, both by ear—ironic, I know—because reading sheet music never interested me. I wanted to feel the music, not break it down into scales and theory. One of my music teachers understood this and let me play whatever I wanted at the end of lessons. I remember painstakingly picking apart Beethoven’s Moonlight Sonata, bit by bit, even if I absolutely butchered it.

Now, between my hearing loss, EDS-induced joint instability, and declining motor skills, playing is out of the question. Even buttoning a shirt can be a struggle. And let’s not talk about Salsa dancing, which I adored but had to give up when standing and walking became impossible. Still, as long as I can hear music, it will always be a source of joy and energy. I may have to adapt, but I refuse to let it fade from my life.

Music to me is more than just sound, music carries memories for me. Certain songs instantly transport me to different moments in my life—some joyful, some bittersweet. Losing the ability to play hasn’t taken away those memories, but it has changed the way I experience them. Instead of creating music myself, I now rely on listening to reconnect with those moments, holding onto the emotions they bring.

The Lip-Reading Superpower

One silver lining of spending 25 years in hospitality, working in ridiculously noisy environments, is that I unknowingly trained myself to be an elite-level lip reader. I’m so good at it now that people forget I actually can’t hear them when I’m not looking at them. This leads to some awkward social encounters—nothing like turning around to find someone staring at you as if you just slapped them because you didn’t respond to something you never heard in the first place.

It’s one of those things that leads to recurring arguments, particularly as my hearing continues to slip. I try to remind people: If repeating yourself annoys you, imagine how frustrating it is for me to be scolded for something I can’t control. Most of the time, I let it slide, but on bad days, I’ve been known to snap: I AM DEAF. I HAVE BEEN FOR OVER A DECADE. YELLING AT ME WON’T MAGICALLY FIX IT. That usually gets the point across… at least for a while.

The Challenges of Socializing

One-on-one conversations are where I thrive. But throw in background noise, multiple people talking, or—heaven forbid—a group setting, and I’m out. It’s just too much effort trying to piece together fragmented sentences while my brain scrambles to lip-read six people at once.

The Joy (and Frustration) of Sign Language

Because navigating social situations has become harder, I decided to start learning sign language. When I lived in Canada, I started with ASL (American Sign Language), but since moving back to the UK, I’ve switched to BSL (British Sign Language). And let me tell you—BSL is way harder. Maybe that’s just because I was still working when I learned ASL, so I had more daily opportunities to practice. Either way, I’m mostly learning BSL on my own now.

I’ve tried to get others involved, but since I’m such a skilled lip reader, people don’t feel the urgency to learn. Which is a shame, really, because sign language isn’t just useful—it’s also fun. Who wouldn’t want to have a secret hand signal conversation across a crowded room like some kind of spy?

The Reality of Hearing Loss: A Balancing Act

At the end of the day, hearing loss is an adaptation game. Whether it’s lip-reading like a pro, managing the additional complications from EDS, using subtitles for everything, or selectively removing hearing aids when chaos ensues, I’ve had to adjust in ways I never expected.

Would I love for people to be more mindful? Of course. But life moves fast, and hearing loss is one of those things people forget—until they get frustrated. So, for now, I’ll keep doing what I do best: adapting, learning, and reminding the world that just because I look like I’m keeping up doesn’t mean I can hear you.

And if all else fails, I’ll just take out my hearing aids and enjoy some peace and quiet.