by Kimberly
“How did you lose your hearing?” This seems like an innocuous question to most people, but as a person who hears it repeatedly, I feel the need to point out that it can be frustrating. I can see why people ask. Most of us associate hearing loss with age. I’m relatively young, so people are surprised and curious when they find out that I have significant hearing loss in both ears. The thing is, you shouldn’t always ask people about the things that you happen to be curious about.
For instance, my mom taught me that, “What do you do for a living?” is not the first thing that you should ask someone about themselves, and you should be careful about when you do ask it. Why? Some people don’t like their jobs and don’t care to talk about them. Many people don’t want to feel defined by their careers or categorized by what they do. They think that they have more to offer than just being a waiter or a postal employee.
As a woman of child-bearing age, I can tell you that, “Are you planning on having children?” is question that could open a huge can of worms. What if the couple disagrees on the subject and is trying to work it out? Sometimes people have trouble conceiving. Maybe they’re still unsure and uneasy about the subject? What if they really don’t want kids, but are afraid to admit it to someone who might take offense? It’s nice to express interest in another person’s life, but the wrong question at the wrong time can really spoil a conversation.
So what might be wrong with asking someone why s/he suffered hearing loss? The big answer is that many of us don’t know the answer ourselves. I personally spent several months trying to chase down the cause of my hearing loss and exhausted myself in the process. One otologist scared me, a rheumatologist laughed at me, and a chiropractor tried to get me to spend hundreds of dollars on a strict diet and supplement regime.
I was on steroids for months, and I got multiple MRIs. Needles were poked into me countless times. In the end, my hearing never improved, and I had very little new information about what had happened. I wasn’t even positive when the actual hearing loss had taken place, and that can really mess with your head. When somebody asks me why I lost my hearing, I get frustrated that I don’t have an answer for them because I’d like an answer myself.
It’s especially annoying when I tell someone the very little that I do know (“It’s nerve enlargement caused either by a virus or an autoimmune disorder,”) and they start asking me probing questions about whether I’ve tried this medical test or treatment…or they start suggesting illnesses that I might have! Who needs WebMD when your regular acquaintances are happy to make you a hypochondriac?! Maybe it’s Meniere’s or syphilis! Keep those suggestions coming! But seriously, I’m tired. I don’t want to talk about it. You’re picking at a scab that I’d like to heal already.
Consider, too, that some people do know the cause of their hearing loss, and it’s still not something that they like to talk about casually. It could’ve been caused by a head trauma, chemotherapy, or a childhood illness that they’d rather not revisit. It could be hereditary, and the person may be aware that, as a result, they’ll continue to lose their hearing until they’re quite deaf. This may be a sore subject. Of course, I’m sure that there are people who are perfectly happy to discuss the causes of their hearing loss, but let them bring it up. Let it come up in the due course of conversation. Don’t put someone on the spot and make them account for their physical differences.
If I don’t want questions about my hearing loss, I guess I just shouldn’t bring it up in conversation, right? Well, it’s not that simple. Often, I need to bring up my hearing loss because I want people to be aware of it when communicating with me. That way, if I need them to repeat something or if I clearly misunderstand something, they understand why and, hopefully, are a little more patient with me.
Conversations are easier and less stressful for me when others are aware of my hearing loss. It’s not always easy to know how to work that into a discussion either. Do I wait for a moment when I really can’t hear to explain, or do I try to drop it in casually earlier in the conversation? If I do the former, I run the risk of interrupting discussion at an inopportune moment, but if I do the latter, I run the risk of the person thinking that I want to start a whole discussion of my disability.
No one’s perfect at discussing hearing loss, even those of us who have it. If someone asks me the dreaded, “How did it happen?” question, I don’t hold it against that person. They just don’t know what else to say. I have a suggestion: “Is there something that I can do to help you hear me better?” That is the very best question that you can ask anyone with hearing loss.
Even if our answer is, “No, I’m hearing you just fine,” we appreciate the gesture immensely. It means that you’ve put yourself in our place and thought of how we must feel. You’re showing that you want to include us in your discussion. It means that you acknowledge that hearing loss isn’t something that happened to us so much as something that we deal with every day. I don’t bring this up to shame anyone. We’ve all asked the wrong question at the wrong time, but consider how much better everyone will feel if you ask the right question instead.
Well said! I didn’t know what to say for years, like my doctors I shrugged my shoulders and said “No known reason, it’s just one of those things.” I don’t think people always believe it.
I’ve become pretty good at shutting down inappropriate questions, but I’m very open most of the time and if someone is truly interested it can lead to a great conversation that goes beyond hearing loss and creates a lasting connection. You’ll find there are those dealing with hearing loss, whether themselves or someone they love, who will inquire because they see you as a person who is living a vital life with hearing loss and that inspires them. It’s those times that talking about how I lost my hearing and recounting my own experience is the most rewarding. I’ve written some blog posts here on SWC about it. :o) ~~Michele
It’s really frustrating to see people disappointed when I can’t provide answers because I’ve worked so hard to get over my own disappointment in what I can’t know. I don’t want to bring it back! I’m getting better at this though. Even in the few months its been since I wrote this blog post, I think I’ve become less fragile about these things. While I’d still rather people not ask me these questions, I do use them as an opportunity to remind myself that it’s OK not to know.
I think most of us don’t have a clear-cut answer as to why we have a hearing loss. I think the medical community should want to provide this information, if for no other reason, to try to discover if more cases of hearing loss are preventable? We know how to prevent noise-induced hearing loss, but that’s about it. ~~Michele
It’s true–you never know what someone is going through themselves, so I am pretty careful about how I deflect such questions. Sometimes I’m talking to someone who works with or has children, and I think that in those cases particularly, the person is trying to broaden his or her knowledge about how these things happen. It’s understandable, and it bothers me less and less.
Also, it’s totally different when another deaf or hard of hearing person asks you. I got the “how” question a few times at the Say What Club convention, and I didn’t mind at all…because in those cases, people are looking for connections. For instance, if I said that it was hereditary and I had deaf parents, there would be a bunch of similar people that that person could introduce me to. When I did respond that I didn’t know, people understood and left it alone.
I definitely don’t mind the questions about how I cope or even at what age I lost my hearing. And eventually, if the conversation comes around to how it happened, that makes sense. I think it just puts me off when people go straight to the medical stuff. I guess maybe that’s some people’s way of making sense of the world around them–putting things into clinical terms and attempting to problem-solve. I’ve had to learn that medicine sometimes doesn’t hold all or even most of the answers. Ultimately, this whole process of my understanding my hearing loss isn’t about “fixing” what happened to me; it’s about accepting and being honest about the way that I am. That kind of thing doesn’t happen in a doctor’s office.
I have to admit, I’ve run into some pretty shoddy bedside manner when it’s come to diagnosing and treating my hearing loss. I’ve either run into people who guess at answers before they have evidence or people who shut down my desire to know with a flat out, “You can’t know,” along with implications that I’m some kind of hypochondriac for caring. I’d take, “I know that this is really frustrating not to know, but it’s really difficult for us to tell for these reasons…” Doctors should learn this!
When I first met Jim, I was careful not to ask personal questions about his hearing because I wanted him to know that it was not as important to our relationship as the things we had in common were. I figured he would tell me when he was ready, and those of you who know Jim know that he doesn’t hold back! Now I admit that one of the things I first admired about him was his adaptation to his hearing loss (still do). What are some of the ways a person can deflect this or any other personal question tactfully? One response I’ve heard is, “why do you ask?”
Ooo, that’s a good one!
People rarely ask me how I lost my hearing, except kids. It doesn’t bother me at all when when they do. Usually I am the one to bring it up, and then they tell me they always wondered, but weren’t sure if it would make me uncomfortable if they asked. It doesn’t. I am keenly aware that people wonder how these things happen and are probably concerned it might happen to them. Anyway Kimberly, I am the same as you. The doctors have theories but because it was a gradual loss that showed up long before it was diagnosed, no one knows for sure. When it was first diagnosed, I had a bunch of tests, including Connexin, and they eliminated all the serious things. I had the Connexin testing because I have kids, but it didn’t show up as hereditary. Which wasn’t a surprise. No one else in my family has had hearing loss. Not even my grandparents.
A few doctors have suggested that the pattern of my hearing loss is similar to those who lost their hearing from the measles. Since I did have measles as a kid, they usually say that was “probably” it, but they don’t know for sure. I’ve been told that it isn’t uncommon not to know, especially in the case of a gradual hearing loss. I usually tell people it was measles, because a few doctors have suggested it’s the most likely cause. But they really don’t know.