Living With Psoriatic Arthritis Induced Fluctuating Hearing Loss

People don’t really understand all of the possible implications of what it means to have psoriatic arthritis.

Painful joints? Yes.

Swollen digits? Yes.

Fatigue? Absolutely.

But there are so many more avenues that psoriatic arthritis can wreak havoc on our lives. Many people struggle with additional issues such as uveitis or plantar fasciitis. In my case, it is fluctuating hearing loss. I first experienced hearing loss before I even knew I had psoriatic arthritis. It turned my life upside down then, and the craziness hasn’t stopped since.

Day to day life with traditional hearing loss is challenging enough. For many causes of hearing loss, such as the age related or congenital variety, the actual progression of hearing loss occurs in a steadily worsening pattern. However, in my experience, PsA related fluctuating hearing loss follows no such progression. Some days my hearing loss is tolerable, while other days, I feel like I can barely hear anything. According to my doctor, the expectation is that my hearing would gradually decline until it “settles” around the moderate to severe level. Well, it has been roughly two years now and it has yet to “settle” anywhere. On any given day, my hearing loss can go anywhere from mild to moderate to severe.

Fluctuating hearing loss comes with many challenges

Money

Like most things medical related, losing your hearing comes with a hefty price tag. Oddly enough, unless you are a veteran or qualify for special services, you will end up paying for hearing aides out of pocket in the United States. They are rarely covered by health insurance providers. Trust me, these babies aren’t cheap. A middle-of-the-road pair will easily set you back several thousand dollars, not to mention the fitting fees and maintenance costs.

Reliability

PsA related fluctuating hearing loss can make it almost impossible to know what to expect on a day to day basis. The up and down nature of the hearing loss makes it very difficult get used to any particular level of hearing loss. It can make it hard to know what to expect in different social situations or events. Not knowing at what level you will be able to hear from one day to the next makes planning quite difficult.

Frustrations

For the most part, feeling frustrated with hearing loss is mostly felt by those trying to communicate with me. Although I’ll admit, saying, “Huh?” can get pretty old too. Normally, when people experience hearing loss, it takes a bit of time to get used to wearing hearing aids, but eventually, with the right programming for your hearing loss, you will adjust. However, my hearing changes, sometimes daily, making it extremely difficult to adjust to effectively wearing hearing aids. Some days they are too loud, other days they aren’t loud enough. Constantly adjusting them up and down is frustrating and exhausting.

Unforeseen benefits of living with hearing loss

One of the perks of hearing loss, however severe it may be on any given day, is that it is easy to “tune out” things that I don’t necessarily want to hear. My children are young so my house if filled with many of those lovely children’s toys that play the same obnoxious songs over and over again. Some days, I am lucky enough to me pretty blissfully unaware. I’ve also discovered that I have a deeply hidden talent of lip reading. Between still being able to hear some things and this amazing talent, I can usually get by with most people not even knowing I can’t hear them. And if not, the difference between what I hear and what is said is always good for a chuckle.

One of the most important parts of my fluctuating hearing loss is I have even been able to notice that my hearing loss always gets worse, very shortly before a flare. This little signal allows me a little notice to make sure I get myself home and rest.

Do you struggle living with PsA related fluctuating hearing loss? Have you found any tips or tricks to make life just a little easier?