“Does anyone in your family have a hearing loss,” the doctor asked.
“Yeah my 80 year old grandma.” That didn’t count.
“Have you been around a lot of noise; rock concerts, hung out around airports or went hunting a lot?”
“I’ve been to three concerts, I went hunting a handful of times with friends as a kid but never hung out at airports.” None of those counted for the amount and kind of hearing loss I had at 23 years old.
“It’s just one of those things then. I don’t know why you lost your hearing.”
Over the next fives year, two more doctors would tell me the same thing. “We don’t know why you are losing your hearing,” and it bothered the hell out of me. I wanted to know why.
Some years later, another doctor suggested it might be auto-immune hearing disorder but it wasn’t backed up due to foul ups with referrals during the whole HMO process along with doctors not communicating with each other. I didn’t pursue it after doing a little research because the treatment was immune suppressants and steroids, yuck. At last I had a possibility of why and my roaming mind settled down. I could now tell people, my hearing loss might be auto-immune related. Between the doctors and the HMO, the experience left a bad taste in my mouth and I haven’t been to an ENT since the late 90’s.
Doctors aren’t high on my list and I lost respect for them over the years. They waste my time keeping self-inflicted, impossible schedules and rarely take time to get to know me. Every 15 minutes they have at least one person scheduled. If I kept my appointment book like that as a hairdresser, clients would walk away in droves. There are hair emergencies just like the health emergencies and clients will put up with it from time to time but doctors do it to us all the time. (Maybe we should rebel and start charging doctors for our wasted time?)
Once I showed up early at a new office to fill out the appropriate paperwork and the office was packed. Mine wasn’t an emergency appointment and made well in advance but looking around, I knew I’d be losing money taking the time off work. Already irritated, one sheet of paperwork asked me about my personal health history along with my family’s. Out of curiosity, I marked everything wrong to see if my time was further wasted with this exercise.
After 45 minutes in the waiting room past my appointment time, and another half an hour of waiting in the examining room, the doctor came and sat down. He looked at one page in my chart (I suspect to see if I had health insurance), he barely glanced at me while asking a few questions, wrote the prescription for my asthma inhaler and was out of there in ten minutes. What a huge waste of my time! And another chunk of respect lost for doctors.
Luckily the internet provides lots of medical information and there’s plenty of opportunity to meet people who have been through the same thing, like hearing loss. Questions can be answered without stepping foot in the doctor office, reserving that for the times I need antibiotics only. The internet also gave me the SWC where I met lots of people with hearing loss who experienced the same thing I did. “We don’t know why you are losing your hearing,” and they were just as frustrated as me. I even met a few people diagnosed with auto-immune and in talking with them, I carefully considered the path I wanted to take, which not pursuing proper referrals and the treatment.
The urge to know why isn’t white hot anymore but that doesn’t mean I don’t wonder from time to time. Is it auto-immune hearing disorder or something else? While doing research for various projects on hearing loss over the last year, I ran across information about childhood illnesses the doctors never asked me about. I had mononucleosis at 11 (before I started kissing the boys) which is known to cause hearing loss. Is this new information or did the doctors not take enough time to get to know me? At 14 years old I had scarlet fever – also known to cause hearing loss. There’s also a link between allergies and hearing loss and I’ve had major allergies all my life.
Could all this add up to a why? Looking back, I think scarlet fever may be the culprit in a combination ways. Before scarlet fever, I was sick every month or two. If it wasn’t something odd like above, it was strep throat, tonsillitis or bronchitis. My poor parents had me at the doctor several times a year. After scarlet fever, it all reversed and I hardly ever got sick. Over active immune system??? Or maybe it was the scarlet fever itself?
It was not long after that, I started asking for repeats more often, couldn’t hear from back seats of vehicles and walked right by people who tried talking to me. Since it’s a progressive hearing loss, I’m not sure that’s answer either. In all likely hood, the cause of my hearing loss will stay unknown. It could be mono/scarlet fever/allergies… but they will never know for sure and neither will I.
Doctors understand hearing loss better than they did 20 years ago but a good portion of it remains a mystery. Even fourteen years ago my family doctor thought auto-immune hearing disorder was a bunch of “bull” but I hope he knows otherwise now. Wouldn’t it be nice for doctors to get more in depth with us so we aren’t left wondering why so much? I might feel a little better about my money spent or long waits if that was the case.
What are your doctor stories? Anyone have a good doctor to share?