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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!
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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
https://www.50statenetwork.org/become-a-50-state-network-advocate/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.