sound aa woman with an x over her ear and sound waves on both sides of her

Hearing Issues and Rheumatoid Arthritis: Add It to the List

I’ve struggled with my hearing for as long as I can remember. It’s been something that has caused me feelings of isolation and embarrassment, especially when I was younger, because I was sometimes scolded by various adults who just assumed I wasn’t listening.

It shamed me enough as a kid that I hid my issues as much as possible, and I developed strategies for figuring out what was said. I would sometimes get by with hearing fragments of sentences and then putting the rest together, and in the era of COVID-19, I realized that lip reading was something I’ve used, too. Masks are so hard when you have hearing loss!

Seeing an audiologist for my hearing loss

When I met my current partner, I quickly learned that he lives with catastrophic hearing loss and relies on his hearing aids all the time unless he is sleeping. He encouraged me to consult an audiologist and get my hearing checked.

I was reluctant, only because I was pretty sure I would be told I was a candidate for hearing aids. Until then, it had been something I could mostly hide, and I had convinced myself that it wasn’t too bad; but, deep down, I knew I was lying to myself.

I walked into my appointment feeling apprehensive and prepared to try to talk my way out of hearing aids — I just didn’t want to bother with yet another gadget, and I had gotten by all my life without them, so what benefit would they actually give me?

My decision to get hearing aids

Well, as I learned during that appointment, a lot. My audiologist explained to me that the many years of high doses of aspirin I took during the beginning of my life caused changes to certain cells in the ear, and that the middle ear joint can get inflamed with rheumatoid arthritis (RA), which also causes hearing loss and tinnitus, or ringing in the ears. It made me remember my Mom telling me that as a young child, I had told her that I had birds in my ears.

"When you have hearing loss and don’t wear hearing aids, your risk of cognitive decline as you age increases a lot," said my audiologist. She asked me, "Do you struggle to hear at parties, dinner out, or watching movies? What if that wasn’t happening anymore? Would that make your life better?"

I decided then and there that I was getting hearing aids.

Hearing aids have made my life better, but I still struggle

I wish I could say that they did change my life dramatically, but because juvenile rheumatoid arthritis seems to mess with how everything grows, my ears were hard to fit. I ended up with 1 choice of aids that kind of fit, but not really. They had to remove a part of the hearing aid, called the wax trap, and I’ve lived with them for 5 years.

Since I got them, I have noticed certain improvements — as it turns out, when you start to hear better, your brain perks up and starts paying more attention to sounds, and it starts getting exponentially better at hearing. My aids have made my life better, but I still struggle because they don’t truly fit. Unless I literally hold them in place, they never stay in place for long.  

Who else has experienced hearing issues with RA?

So, 5 years later, I am getting another pair from a new brand, one that will hopefully stay in place and help much more. I’m spending a lot more money on this pair, and I’ve decided that unless they truly fit, I will keep looking to see if I have any other options. I do hope that they will and I can finally experience good hearing.

I am wondering if anyone else experiences hearing issues, and if so, how are you handling them? Did you talk to your rheumatologist about it or go directly to the audiologist? I never heard from any rheumatologist about this issue, and I wonder if anyone else has.

There are so many issues that come with rheumatoid arthritis, and hearing loss seems to be a really hard one; but also, in my experience, it is often ignored.

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