Psoriatic Arthritis Hearing Loss and Hearing Aids
If you’ve read my diagnosis story, then you might know that it largely revolves around hearing loss as one of my first “real” symptoms. I experienced sudden hearing loss, with little to no explanations from several visits to my first ENT doctor.
Even after my second opinion ENT, diagnosis of autoimmune inner ear disease, and subsequent pricey purchase of hearing aids, no one made the connection between my hearing loss and psoriatic arthritis.
Connecting hearing loss with psoriatic arthritis
I managed to receive a sort of backward diagnosis of psoriatic arthritis (PsA). Hearing loss was pretty much one of my first recognizable symptoms, only later to realize that it was caused by PsA. I suppose that is the beauty of hindsight (or hind-hearing would perhaps be more accurate).
Since then, I’ve worked very hard to spread awareness about the links between hearing loss and psoriatic arthritis. I spent too much time just floating in the sea of uncertainty while my body and joints suffered additional damage, prior to my diagnosis and treatment.
The consistency of hearing loss
However, even with proper diagnosis and treatment, living with PsA induced hearing loss and hearing aids is no walk in the park. If like me, you have hearing aids, then you know that one of the number one rules of life with hearing aids is that you must wear them consistently.
But the problem with this, in my experience, is that my hearing loss isn’t consistent! Which let’s be honest, is super annoying. The level of my hearing loss is very dependent on three things:
- The amount of inflammation in my body
- If my medication is actually working
- The amount of permanent damage my ears have sustained
In practical terms, something an audiologist would understand, some days my hearing is practically non-existent (someone could be mowing the lawn and I could barely hear it) and other days, “good days”, I can actually hear the dishwasher running. Which usually results in me questioning my family, “What is that strange noise?”
The chore of hearing aids
So let’s think about how this applies to life with hearing aids. How am I supposed to consistently wear them, when my level of hearing loss is so inconsistent? Hearing aids are “programmed” correctly by experienced audiologists. Which works really well for typical hearing loss patients, not so well for those of us with fluctuating hearing loss from PsA.
If my aids are programmed for my “bad” days, then wearing them on the “good” days is next to impossible. Which as you can see, really hinders my ability to consistently wear my hearing aids.
Over the years, I’ve tried several things to manage this. Before noticing the pattern in my fluctuating hearing loss, I started going to my audiologist very frequently for adjustments. I spent a ridiculous amount of time (not to mention money) there.
If managing psoriatic arthritis wasn't trouble enough
The more adjustments I needed, the more I thought I was truthfully losing my mind. The adjustments would be good for a few days, if I was lucky, maybe a few weeks. But then I would be improving on medicine that actually “worked” my hearing would improve, then I would stop wearing them because they would be too loud. And it just became a vicious cycle.
The constant time and money of running back and forth to the audiologist took its toll. I couldn’t juggle those appointments with all my other appointments as well as life with 3 young children. Eventually, I hit on a pair of hearing aids that can be programmed at home on your own computer, which was very helpful for a time. But with the amount of fluctuating I experience, even that became ridiculously tedious.
Does hearing loss affect everyone living with psoriatic arthritis?
I’d imagine (and maybe secretly hope a little) that I’m not alone. Of the hundreds of people that I’ve personally run across that experience PsA related hearing loss, I can’t be the only one that experiences the continuous fluctuations even sometimes on a daily basis. It is not only frustrating but unnerving and overwhelming.
I’m not the only one who suffers because of my hearing loss and hearing aids, without a doubt. My poor family doesn’t know whether to shout at me or talk relatively normally. It is understandably frustrating for them feeling like they aren’t being heard or having to repeat themselves over and over again. It really puts additional stress on our relationships.
Hearing loss is a part of psoriatic arthritis
The connection between hearing loss and psoriatic arthritis is one that certainly can’t continue to be ignored by the doctors and audiologists who serve our community. The stories that I’ve heard about doctors dismissing patient hearing loss as unrelated is absolutely absurd!
Every single part of the human body is subject to possible inflammation, why not the ear canal? After all, part of the ear is comprised of the smallest joint in the human body.
Have you experienced hearing loss? Does it fluctuate? Do you manage to get hearing aids to work acceptably well for you? Has your doctor done anything to help? I would love to know!
How do you plan to recognize PsA Awareness Month?