Advocacy Without An ESSENTIAL Tool in the Toolbox!
This is my 1st of 4 blog posts about navigating life with an uncommon form of laryngitis. View the others:
By Ailene Gerhardt, MA, BCPA, CSA®, Founder, Beacon Patient Solutions LLC & Navigating Solo Network
As an Independent Board-Certified patient Advocate and Certified Senior Advisor®, I spend my professional life helping clients navigate the complexities of our healthcare system. Not only do I work with clients one on one, but I also offer educational talks on a variety of topics. Throughout my work week, I use my voice, literally and figuratively, to amplify the voice of others and make sure they are heard, and their needs met.
As I was driving home on the afternoon of Wednesday, August 2nd, after a presentation at a fantastic event for solo agers in NYC, I somehow lost my voice. I am not sure how it happened.
My presentation at 10:30 am went very well and I left NYC around 3 pm having stayed hydrated and energized, and somehow lost my voice. By Thursday, my voice was strained (sounded like a loud whisper), and on Friday it sounded a little like a goose was stuck in my throat.
On Friday, I even tried my best to support a client by virtually participating in a family conference with a care facility, but it was a massive struggle. By Saturday morning my voice was lower than a whisper. It did not improve at all over the weekend and by Monday morning, it still wasn't back.
I arrived at urgent care on Monday morning with a printed list of symptoms and other key medical information and handed the providers a piece of paper which said "I have laryngitis. I am happy to ask and respond to questions in writing!" I brought a pad of paper and a pen with me to be able to take notes and to communicate as needed. After ruling out any kind of illness as a cause, I was diagnosed with laryngitis, ordered to rest my voice, and referred to an ENT (Ear, Nose, and Throat doctor).
I returned to my home and called the Otolaryngology department to which I was referred and tried to explain the situation and make an appointment for myself. Straining my voice to be heard on the phone gave me a headache. When the scheduler said “first available for new patients is mid-November” I took the appointment and tried to ask about anything sooner, but it was a struggle and I wound up completing the call.
This was a new experience for me. I have interacted with scheduling staff at numerous offices for personal and professional reasons. I have asked follow-up questions, sought more information, and insisted on scheduling appointments on a reasonable timeline. During that phone call, I could not do any of that and it was frustrating.
After stubbornly trying to figure out ways to accomplish the task on my own (was there an electronic option via an online portal, how else can I achieve this?), I accepted the assistance of those who offered their help from the get-go. One friend (also a healthcare advocate) checked in with their ENT’s office to see if there were any appointment openings and then also called a throat specialist’s office. Another friend (and healthcare advocate) reached out to some contacts at a well-known hospital here in Boston. After a short amount of time, I had an appointment with a throat specialist that week! I am very grateful for the hard work of good friends.
Now that I had an appointment to explore the cause of my laryngitis, I still had to tackle audible communication with others. Like many, I take my voice for granted (or I did before all of this). It is my key tool for communication. Using my voice is an integral part of working with clients. From the moment I speak with a prospective client as part of the intake process, it serves as an essential tool in my advocacy toolbox and now, at least in the short term, it is not a tool I can draw upon.
I am also fortunate to offer a variety of community education talks and presentations in partnership with community organizations around Massachusetts and nationwide. My voice serves as an essential tool for this as well.
However, voice rest means not using my voice and NOT whispering (it puts a lot of strain on one’s larynx). Having limited social interaction {not using the phone and not speaking during meetings) all to protect my voice was feeling more and more isolating. My voice is being protected, but my mental health is being affected.
Research is a key part of self-advocacy and I decided to explore what text to speech/voice software is available for our computers and phones. I’ve landed on a few tools I am testing out and trying to get the rhythm of typing what I want to say and then playing it back. It’s going to take some practice, but having some options gives me the opportunity to feel more connected.
Below is an example of a tool I am using on my phone:
When my friend made my appointment with the throat specialist, she texted “Let me know if you’d like a companion and I’ll be your speaking advocate!” I took her up on her offer! Another friend also offered to be my “wingwoman!”
I needed my friend’s assistance from the time we arrived at check-in. Although I could easily present ID and an insurance card, audibly communicating my name, and other details was not a possibility. Throughout my appointment, my friend took notes, listened to the explanations, prompted me to ask the questions I had planned to, and offered support and comfort. I am very grateful.
After the throat specialist and a speech pathologist reviewed my history and symptoms, and did a flexible video stroboscopy, I was diagnosed with idiopathic ulcerative laryngitis. The layperson’s takeaway is that my vocal folds have some damage and are working to heal. It's an uncommon type of laryngitis, recovery of the voice is slow, and there is no known cause (and when it does occur it often affects women). In addition to voice rest, my homework involves straw therapy. Then I check back in with the throat specialist in one month!
My recovery is going to take patience and a lot of self-advocacy. It’s also going to help me continue to learn how to accept assistance from others.
Advocacy is most effective when you have all the tools you need functioning at full capacity. But one can always improvise. Some technological tools will hold the place for my voice in my advocacy toolbox and it will return when it is ready.
Connect With Us: When the complexity of your healthcare situation is too challenging to navigate on your own, working with an independent board certified patient advocate can help cut through the “red tape,” reduce complications, and offer peace of mind at an emotional time. Contact Ailene to learn more about the value of working with a private patient advocate.