Read My Lips

Sorry to hear about your ordeal. The masking was very frustrating for me as well. I went to the doctor and the front office staff threatened to cancel my appointment because I wasn't wearing a mask when I came in the waiting room (which was empty).When I said I was exempt, the woman said to me "you are not allowed to endanger my life" (I was 6+ feet away from her) So I put the mask on and when another staff member started to talk to me, I told her I couldn't understand her because I was hearing impaired and she spoke louder. But the next time I said I couldn't hear her, she said " I should not have to raise my voice. " All this was against ADA regulations. I should have complained to my doctor but I didn't waste my alloted time with her.
At a different appointment, the dermatologist assistant would not remove her mask and she sat so far in the corner away from me like I was contaminated. She said she had to wear her mask starting in the parking lot and if she removed it she could get fired. Fortunately when the dermatologist came in, he was wearing a clear shield.
A third time was a more positive experience. I was meeting with a dietitian and told her I was hearing impaired and she was glad to remove her mask.

I have had similar experiences with medical providers because of masks. I changed primary providers in the past year because I had moved. My new doctor’s office required masking for a while. The new doctor herself had an accent and spoke very fast; I was unable to understand much of what she said. These kinds of issues certainly manifest a lack of understanding of and a lack of concern about hearing loss on the part of the general medical community, but I believe your experience, Frances007, manifests an even broader attitude on the part of much of current medical practice: a supercilious attitude of ignoring and dismissing individual patient experience and individual patient concerns overall.

I recently had an egregiously dismissive experience with an ENT provider and his office to the degree that I simply walked away from the practice, because I was treated with such little concern. Next week I have an appointment with a different doctor in the same practice. My visit with her will begin with a recital of my previous experience with her colleague and the pointed question whether I can expect a different level of attention and concern from her. Whether I stay with her will depend on her answer.

I believe we patients are becoming less and less visible to our doctors as thinking, feeling human beings with our own priorities and concerns about our health and wellbeing. We have become reduced to configurations of what doctors see on their computer screens as a result of tests, scales, and calculations. (Next time you visit a medical provider, note how much time they spend looking at you versus their computer. ) Treatments, medications, procedures, etc are prescribed pretty strictly on the basis of pre-set protocols rather than doctors actually seeing us, listening carefully to us, and taking our own particular histories with medical care and our own preferences into consideration. I think this blind, dismissive attitude is particularly acute when we patients are women, are older, or have hearing loss.

I have now made it a priority to seek out only providers who make it clear that as a patient I am seen as a fully functional, fully engaged, reasonably intelligent human being who understands her own health history, knows that today’s medical care - diagnostic procedures, treatments, and medications - is not always necessarily benign and can bring about harm as well as improvement, and has both a right and an obligation to weigh in on and, finally, to decide what happens to her in a doctor’s office, hospital, or treatment setting. I expect it will be an uphill battle.

Hello!

I’ve been a longtime reader of these posts, & today I feel like I have something to contribute so I’ve created my account! My name is Sara, & for the last 20 years I’ve worked as a Teacher of Students with Blindness/Low Vision. I’m also hard of hearing. Some of the areas I teach my students include braille, assistive technology, & Orientation & Mobility (long white cane skills)…but I think the most important skill I teach my students is self-advocacy. Reading this post made me think that some self-advocacy would have gone a long way in making this appointment successful.

This does sound like an incredibly frustrating situation, Frances! I’m wondering if additional self-advocacy strategies might have helped you in this situation. Some areas would have been out of your control, such as having the dr. look at your back—annoying, but, ok, rules are rules-- if it wasn’t part of the initial referral you’ll make another appointment for that.

Areas that could have been in your control might have included some additional prep before your appointment—after all, you’ve waited 6 months to see the dr., so you want to understand all of the important information the dr. has to tell you, & help make the appointment to go as smoothly as possible, right?

Have you considered using a speech-to-text app in situations where you may have difficulty hearing & have essential information to receive? There are a number of phone apps that will do just that. Depending on your brand of hearing aids, there’s also likely a tabletop or clip on microphone that connects directly to your hearing aids that you could use as well.

I often carry an extra mask that’s designed for people who are deaf/hard of hearing. You may have seen the ones with the clear window. Those can be helpful to give others in situations where speech reading would be helpful, such as a dr.’s appointment & masks as still required. Again, like with the referral for the sore on your back, if the policy is that doctors must continue to mask up, you, as the other half of the communication team, should other ways in your back pocket to ensure a successful interaction.

Most of us know that many people, (some doctors included!) are under the impression that hearing aids “fix” hearing loss the way glasses fix vision in some cases. Those of us who wear them know all to well that even with hearing aids, our hearing is not perfect. So, this dr., when he heard your comment, “see my hearing aid?” he likely thought that since you were wearing it, you would hear/understand him.

Other than not lowering his mask, since that was the only suggestion provided to him, I’m not sure a negative review was warranted because no other options were given. Had he said no to the mask, he might have been more than happy to write information down in a notepad, use your speech-to-text app or wear a small microphone that was streaming to your hearing aids! Rather than thinking about signing some choice words, instead, see if CART is available for your next appointment.

You were asking how others handle this sort of situation. It sounds like you have another chance for a successful interaction at your next appointment, so take some time to play around with apps until your comfortable, order some clear window masks, & instead of just stating that you have hearing aids, giving some suggestions on how the communication partner is essential—"I wear hearing aids, SO IT WOULD HELP ME OUT IF YOU COULD face me while talking rather than looking at the computer/speak slower/get my attention before you start speaking,” etc. whatever it is that you need! People generally want to be helpful, but they often have no idea what to do unless we provide them with that information.

I love working on self-advocacy skills with my students because it takes practice to figure out what it is that we need, how to ask for what we need, & how to adapt when our needs aren’t being met. It takes at least 2 people for a successful communication interaction, but it’s up to us to let people know how they can help!

Good luck at your next appointment!
~~Sara

in reply to @zach8051 Thank you for this response. I suppose I could have asked if I needed "assistance" for the appointment, IF I thought that the doctor would not remove his mask. Because there are currently no masking rules in place, presently, I was not prepared for the disrespect this doctor showed me. Even if there had been mask restrictions in place, my request for his to remove his mask, while I placed a mask on my own face, was not an "unreasonable" request according to Sutter's Code of Conduct. In the alternative, the doctor could have raised his voice so that I could better understand him. He also could have offered to write things down on paper for me. He is the professional, I am the patient and I believe he has a higher standard of care when he is treating someone who is "disabled." I do not identify myself as "disabled" but am "hearing impaired." Also, prior to going to any "new" physician, the physician is required to know enough about my health prior to the appointment, and I had completed a questionnaire months ago outlining not only my need to see the dermatologist, but also documenting as much as my medical history as I could on the form I was sent prior to the exam.

In the RARE event that I ever see this guy again, I will simply revert to ALS of which I am very proficient, having learned as a result of a friend who lost her hearing. I have also had a "hearing dog" which died last year, and she too knew many "signs." In any event, I have to disagree with your analysis of my experience, and that is okay.

I spent several hours at Sutter just yesterday and there was not one clinician wearing a mask, with the exception of the phlebotomist, because I had to hand her some specimen containers.
I am aware of many "apps" but not all of them are a good fit for me. In fact, during COVID my hearing aid broke, and I was without a hearing aid for quite a long time before I met a woman named Betty who owns Avalon Hearing Aid Center in Sacramento where I live. If you are interested in seeing her or learning more about the deaf and hard of hearing, I suggest that you watch a program on YouTube, "The Power of Silence." It is a remarkable 30 minute film about the difficulties people like us have when trying to communicate, and I attended the showing of this film with Betty at the local public broadcasting studio. Betty has a program in which she "adopts" those who cannot otherwise afford a brand new high tech hearing aid like the one my sister has, and she sells refurbished hearing aids to those like me at a very reasonable price. If not for Betty, I would still be without a hearing aid, and I am very grateful to have met her via my sister who refused to help me out.

I editing a large part of my experience when I initially arrived at the dermatology office because I did not feel it was important in terms of my "overall" experience; however, suffice to say that after I told my PCP about this doctor, he said to me: "Did you report him. That is terrible."
The doctor was an arrogant person to say the least, and I do not feel I did the wrong thing by giving him all zeros.

I think it is great that you are an advocate, or rather teach others to advocate for themselves. As you are new to this platform, you don't know a lot about me or the medical conditions I have or the advocating I have had to do just to get to the right specialist. In fact, if not for this platform I probably never would have gotten the nerve to advocate for myself, and many of the mentors know this about me.

I commend your work, as it is very important for one to learn to advocate for themselves, as I do. If I have offended you in some manner with this response, it was not my intent, but admittedly it did strike a nerve.

in reply to @kmseay You could not have said it any better, and I too have sought out providers who see me as fully functional and engaged. Often when I have video visits a friend comes over and sits with me because a few of my doctors do have accents, which are difficult for me to understand, naturally
A social worker who I have befriended, and who works where I go to get my treatment told me, as did the phlebotomist yesterday, that things are very bad within the medical system and they do not expect improvement any time soon. Sadly, this makes it all more difficult for all of us to get the right treatment at the right time from the right person. As an example, I have just given access to all of my medical records to my former rheumatologist, who is now a friend since she retired, and she is going to go through all of my records and try to figure out what might be going on in terms of my health, because none of my clinicians can seem to determine why I have lost 40 pounds, have no appetite etc. My friend is incredibly smart, her intellect astonishing and she also did some residency work at the Mayo Clinic. I could not be any luckier or grateful to have her in my life.

Best to you.

in reply to @brian93 Thank you for the response. We must have the same dermatologist LOL
As I was waiting for the doctor to come in, the medical assistant was crouched in the corner applying a band aid to my arm, while saying, "I really an not supposed to be doing this, but I want to help you, I hate it here, the uniforms are so expensive....." Oh dear! I am laughing as the memory comes back to me, because it was so unbelievable. I told the young woman, not to worry because when I got home I would submit a compliment for the help she provided, which I did. Good luck

I certainly didn’t mean to strike a nerve, & I’m absolutely not offended, but when you spend your career helping others learn to advocate for their needs, I couldn’t resist commenting. While I’m a teacher of blind students, you may remember from my post that I’m also hard of hearing. I have had to learn to advocate for my own hearing needs, which include when communicating in medical settings, or in other situations where understanding information is critical.

You’re right that, even if there were no mask restrictions in place, we have no idea if your doctor was just getting over covid/had a bad cold/etc. & simply did not want to remove his mask. He may not have even thought of raising his voice or writing information down. That’s where self-advocacy comes in! We need to be the ones to ask for what we need! And if one strategy doesn’t work for us in a given situation, we need to feel confident enough to ask for the communication partner to try something else.

Yes! I absolutely agree with you…with all of the paperwork & questionnaires that we fill out for medical appointments, wouldn’t it be great if all doctors could remember our needs? Unfortunately, I’ve found that’s not always the case. Just a couple of weeks ago when I arrived for an appointment with a new doctor, I asked the receptionist to make a note on the top of my chart that I was hard of hearing. I then took a highlighter out of my bag & asked if she would highlight that in pink so the dr. couldn’t help but see it as soon as she looked at my chart. It must have worked, because the first thing the Dr. asked me was, “How can I best communicate with you today?” Wow! I realize that might not be the norm, but I can’t help but think that the pink highlighter around “Patient is hard of hearing” on the top of my chart had something to do with getting my appointment off on the right foot!

I believe I know the video that you’re referring to, & it is a good one! I’ll check later to be sure, & if the one you mentioned to is different than the one I’m thinking of, I’ll definitely watch it!

You’re absolutely right that I don’t know you, except for what I saw in your profile, but in your initial post you specifically asked “I wonder how others deal with this sort of thing” with regard to having difficulty understanding people who are wearing masks & I was simply giving a variety of options to improve communication, masks or no masks. Not everyone is aware of the variety of phone apps or how to suggest specific strategies to their communication partner who may have no idea what would be helpful to us in a given situation. Perhaps I simply missed the self-advocacy strategies that you used during your appointment when you wrote your initial post!

I'm sorry you had such an awful experience with the dermatologist. While I have no solutions or answers, I credit you for being honest in your comments on MCC and also with the evaluation after your appointment.

Sadly, there is quite a bit of insensitivity among medical professionals when it comes to understanding how to work with patients who have hearing loss. They don't know how difficult it is for us when we cannot see their faces. The mask issue has been a nightmare for people with hearing loss. People also feel frustration when a medical provider sits facing a computer rather than looking at the them while talking. Any time a person's facial expressions and gestures are unavailable we struggle with communication.

Some people find that speech to text apps they can use on smartphones and/or tablets can help in some of these situations. But it's hard to watch a screen when someone is talking to us, and they tend to not think we're listening.

It's so important to be upfront and honest about an invisible disability like hearing loss. It sounds as if you were. Did you let this practitioner know when you scheduled your appointment that you had special needs relative to hearing loss so they could be prepared?

in reply to @julieo4 Thank you for your response to my post.
You are correct that many people, doctors included often misunderstand hearing loss. As I type this I am recalling the last time I saw the audiologist, a woman I had never seen before. After the hearing test we were walking back to her office, and she was walking ahead of me while talking at the same time. Obviously I did not "catch" a word she said and told her this when we made it to her office. Suffice to say that I never returned to her, and my friend Betty takes care of my hearing needs going forward.

Having said this, I agree that the text to speech apps are generally useless, at least for me, however I do like the visual voicemail, which I lost for a period of time after another iPhone update. And of course, I rely upon closed captioned television most of the time. As a side bar, my friend with dementia and who I take care of every day, now insists on watching television without the sound. I understand why, and have finally convinced her to turn the volume up so I can at least hear something. LOL. She too wears hearing aids and refuses to go with me to have our hearing aids adjusted. Go figure.

In any event, I would encourage everyone, hearing impaired or not to watch The Power of Silence if it still exists on YouTube. I will look for it and if/when I find it I will share the information because it really was a very thought provoking film, and while at the studio viewing many in the audience shared their own personal experience about what it is like to be deaf and/or hearing impaired. Obviously, being in crowds is one of my biggest challenges, as it was for many in the audience. So many with a hearing loss feel left out, ignored or viewed as stupid, in my experience. When I was trying to come up with a "heading" for my recent experience, I kept thinking about that movie with Robert De Nero, Taxi Driver, where he came up with that line, "You talkin to me?" That line wasn't even in the original script, but boy has it become a useful saying for many, myself included.

When I was working for an insurance company handling the most awful automobile and other general liability claims, I used to say to myself, "Go figure that I would get a job where I had to be a very good listener." One company I worked for had a very difficult time when I asked for a headset with an amplifier because no one had ever asked for such a device. The long and short version is that my employer hired a work comp RN to assist me with my request, and my employer not only got me the headset, but also a brand new set of hearing aids. I am telling this because this was back in the 80's when there was not a lot happening in terms of providing assistive devices for those who needed them.

The practitioner "should" have known about my hearing problem because of the questionnaire I submitted prior to the appointment. I suppose I could have added something to the online check in tool regarding my hearing loss, but I really didn't think about it because I knew that there is not currently a masking mandate at the hospital where I go for treatment. There is a question asking if one needs any assistance for the visit, such as a translator or help with mobility and things of that nature, and maybe next time I will add something to the online check in tool when I have an appointment with a clinician I have not seen before. On the other hand, I do have a referral in place with a back surgeon(I know him) who is Greek, and while I love all things Greek (having spent 3 months during college working on a farm in Greece), I did tell my doctor that I will need to rely upon his assistant to "translate" for me because the doctor's accent is "Greek to me."

I landed in the ER twice this past summer and told the receptionist about my hearing loss because I can never hear my name being called when the staff is ready to triage me. My solution to this issue is to tell them that they need to look for the woman with the black baseball cap on, and this has solved the problem. It never ceases to amaze me however, just how far back the tech stands away from the waiting room when they call out the names of patients. So yes, the management of those with an invisible disability can be so inefficient at times.

Fortunately, all of my "regular" clinicians are aware of my hearing issue, and during COVID the only doctor that did not lower his mask was my PCP. Nonetheless, I still see him and he does speak loudly to accommodate me.

Again, I thank you for your reply

in reply to @zach8051 Thank you for this reply. My apologies for being harsh. Understanding that you are a teacher and you encourage others to advocate for themselves, I would like to share with you a site that I am involved with, and which was started by The Global Healthy Living Foundation. Here is the link

I am very involved with this organization which was created to help change the lives of people like me who are living with a chronic disease. As a person who helps others advocate for themselves, I think you will like its content.

I realize I may have been a bit dictatorial in my response to your post. I was aware that you too are hearing impaired, and I am sorry for that. This problem is so misunderstood, that I cannot even begin to describe to you the many times during which I have been ignored, treated like a moron etc because I was unable to hear what was going on at the moment. You have provided some very helpful information, and I especially like the idea of bringing a highlighter pen with you to highlight the fact that you are hearing impaired. I will start bringing one with me to all of my appointments.

When I first read your note, it took me back to the total experience I had when I entered the dermatology office, and I am going to tell another story here, that probably influenced my response to your reply/post.

When I initially got to that doctor's office, all of the clerks were wearing masks, and I was able to hear them because they spoke loudly. However, when they greeted me, they said: "Oh, yes, you are here to be seen for a problem with your foot." I told them that no, I was being seen for a lesion on my face, that I have just come from the neurologist's office and he insisted that I have the doctor look at my back because it was covered with hives that were a result of 2 medication allergies. I mentioned that I was also bleeding from another wound on my arm, and had asked for a band aid, of which I was refused because of the "referral."

I was taken into the exam room where a young female medical assistant began taking my vital signs, and we struck up a conversation. She looks at my arm and recognizes that I really do need a bandage so she moves me over to the exam table where I sit down and she crouches down in the corner, saying the following: "I really should not be doing this, but you are bleeding and I want to help you. I really hate my job, I hate the doctor, and my uniforms are so expensive that I am constantly washing the ones I have." Naturally, I felt compassion for this young woman because it was obvious to me that she was just as stressed out as I was because of everything that had occurred in waiting room when I asked that the doctor look at my back. In fact, there was another patient sitting in the waiting room shaking her head as I was told that since my back issue was not on the referral, it could not be examined, nor could I get a band aid, which I said I would pay for. LOL.

I am currently dealing with many medical issues at the same time, all of which remain elusive to my clinicians. Prior to seeing your reply, I was receiving all these messages from Sutter regarding the lab work I had on Friday, and which I did not want to look at because I know what my doctor is looking for, and if I look at each message that comes from Sutter it only causes more stress, which is why I do not look at them anymore. My total "medical" experience has been a "medical nightmare" to say the least. I am not telling you this because I want sympathy, but more so because all of us, hearing impaired or not, face a medical system today that is so vastly different than it used to be, and which I doubt will change any time soon. At least that is what I have been told by the majority of my doctors, including my PCP who sent me a message last night at 9 pm to tell me the results of one tests, and that in a few days there will be more results. I will be having a CT scan of my chest, abdomen and pelvis in 2 weeks so that the doctors can "rule out other things." I have not asked what they are trying to rule out because I already have a fairly good idea what they are looking for based upon some recent exotic lab tests.

Again, my sincerest apologies for the jarring tone of my reply. It was one of those moments where I was already upset about something else, I should have read my reply a third time before I hit the "reply" button. However, I think my response to you has brought us both a better sense of mutual understanding, and that is a good thing, and why I like this platform as much as I do. It brings together so many wonderful people all looking for essentially the same thing: to be heard, understood and valued.

You sound like a wonderful person who wants to help others, just as I do. I commend you for the work you do to help others advocate for themselves, something that took me years to do, and did not happen until l became involved with MCC. For what it is worth, I have some obscure disease that has resulted in a 40 pound weight loss because one of the side effects of having dilated bile ducts in one's liver is loss of appetite. However, I feel great, have a lot of energy and do everything within my power to help others in many ways. Helping others gives me purpose, and I have a heck of a lot of gratitude that I am able to do so.

Okay, I have read this 4 times and I think it looks good so I am going to hit the "reply". Have a wonderful day. I look forward to hearing from you again soon.