Last week I wrote about how a couple of doctors I had as a child dismissed my mom when dealing with me and my medical issues due to their arrogance. This week I want to write about the single worst doctor I ever had in my life: my first audiologist.
While I have mentioned this before it is important for me to say once again, I have a really rare genetic condition. In fact, the total worldwide population at any one time of people who have my specific diagnosis is probably between 750 & 1000 people. Due to the fact that only two states have newborn screening for my illness, it can be very difficult for kids to diagnosed at a early age. (This is something I am on working on changing at least in NY). If you happen to have a doctor who has seen someone with my illness, it is pretty easily to identify others who have it since many of us present similarly the way someone with Down Syndrome looks like most other people who have Down Syndrome. The problem is, especially 40 years ago when I was diagnosed, is that there are so few of us, many doctors will never see a child with my disease or a similar one.
Because there are many effects of the illness that begin presenting very early on in a child's life, there are certain specialists who are more likely to encounter someone with my illness than a local pediatrician. Many kids with my illness experience frequent ear infections and have hearing loss or fluid build up in their inner and middle ears which brings a lot of us in contact with audiologists and ENTs very early on. Because we also tend to get a lot of colds and bouts of pneumonia, it is normal for many kids with my illness to see an allergist before being diagnosed as I did.
The early years of my life were spent constantly in and out of doctors offices and hospitals. I was frequently sick with all kinds of colds, ear infections, and quite a few bouts of pneumonia. I had already had a few surgeries to repair issues or have tubes placed in my ears and adenoids removed. I also spent about 6 months under the care of an allergist trying to find the cause of my constant runny nose because my pediatrician thought I must be allergic to something. I also got my first pair of hearing aids by the time I was 4. Clearly there was something bigger going on. It wasn’t until my pre-k teacher finally convinced my mom to do more investigating on why I walked differently than the other kids that she asked my pediatrician what kind of specialist I could see for it. Not being sure what to do, my pediatrician suggested she make an appointment with a rheumatologist.
My mom made an appointment with a pediatric rheumatologist at the hospital where I have been followed since that fateful day. By happenstance, an allergist from South Africa walked through the waiting room where I was seated and must have looked over at me. A few minutes later, the doctor with whom I had the appointment came out to ask my mother why we were here. My mother being the sarcastic person she is said, “We have an appointment. Why do you think we are here?” After going back into the examination room and being seen by, not one, but two doctors and then being told they needed to consult a doctor who was home sick, the doctor with whom I had the appointment came in to tell both my mom and me what they suspected I had.
After I the diagnosis was confirmed through additional testing, my mom went to each of my then doctors to let them know I had this rare condition and that they would need to begin collaborating with the specialists I would be seeing going forward. When my mom told the audiologist about the diagnosis. he told her he already knew that I had the illness. I had been seeing this man for more than year by then. When my mom asked why he never said anything to us, he said he thought we already knew. To say my mom was furious would be a massive understatement.
There is nothing worse than knowing you or a loved one is sick and not know why. To have a medical professional proactively keep you in the dark when they know the answer to the question you most want to know is disgusting. Considering how many people I know and knew with my illness who went years before getting the diagnosis they needed and only got it by happenstance like I did, it is infuriating. We immediately changed audiologists.
I have now described some of the worst doctor experiences I had as a child. I have had a few as adult but usually being the most knowledgeable person about my disease when I am in a doctor’s office does have its perks. I am quick to know whether or not a doctor is right for me based on how open they are to my questioning and suggestions. Living in the NYC area and being on Medicare does give me the advantage of having lots of choices. If someone doesn’t work out, I can look for another.
While next Monday is going to be a terrible day (my flag is staying at half staff), I will try to write something positive for Tuesday to lighten the mood. Have a week. LOL
Diarist reserves all rights to his original writing only. Community material is not covered by this ©
Now a word from out sponsor and onto the Tops!
Here at Top Comments we welcome longtime as well as brand new Daily Kos readers to join us at 10pm Eastern. We strive to nourish community by rounding up some of the site's best, funniest, most mojo'd & most informative commentary, and we depend on your help!! If you see a comment by another Kossack that deserves wider recognition, please send it either to topcomments at gmail or to the Top Comments group mailbox by 9:30pm Eastern. Please please please include a few words about why you sent it in as well as your user name (even if you think we know it already :-)), so we can credit you with the find!
Top Comments for june 19, 2025
None tonight :(
TOP MOJO june 18, 2025
First comments and tip jars excluded. Thank you mik for the mojo magic! For those of you interested in How Top Mojo Works, please see his diary on FAQing Top Mojo.