Coming Out of the Dysphagia Shadows: When Telling Someone Opens up New Possibilities

Something wonderful happened last night.

I had been invited to introduce my book and talk about my experience as a dysphagia sufferer to a group of speech-language pathologists (SLPs) over Zoom. Some SLPs were based in Denver, Colorado, and others were based at the University of Pittsburgh in Pennsylvania. If you have swallowing issues, like I do, you know how difficult it is to talk about dysphagia.

Most people with dysphagia will see their voice change over the years. I am no exception. Despite previously working as a host on community TV and banking on that experience to deliver a clear and exhaustive presentation, I couldn't help comparing my voice to the clear speech of the young women in the audience.

But that wasn't the hardest part.

Talking about dysphagia and its reality has always been difficult to do. It feels as though I should be embarrassed to have trouble swallowing. One of the reasons why I wrote the book Give Me a Solid is to say out loud what a lot of people - me included - would rather keep secret. Yes, it does feel awkward when you choke on food, with nearly every bite, in front of other people. Yes, we don't want to admit that this seemingly benign issue scares us to death. And yes, we are too shy to ask for help because, well, it's not a big deal. Right?

During my presentation to the SLPs, together we realized that there is a large group of people out there who live with dysphagia but never see a doctor or consult a medical professional about their issue. They suffer in silence. It took me 20 years before I told my family doctor. Yet, dysphagia is no small matter.

It felt really good to finally share something I had kept hidden for so long. And they were glad that I did.

As Social as It Is Physical

Swallowing difficulties come with several issues.

Choking is the first one that comes to mind when the food we just chewed and tried to swallow will not go down. There are several others, such as malnutrition, dehydration, and aspiration. But there is an invisible issue, just as troublesome: social isolation.

The impact of dysphagia on our social life is so important that an Associate Professor of Communication Disorders and Sciences at University of Oregon, Samantha Shune, PhD, manages a lab that focuses on how swallowing impairments (dysphagia) result in profound biopsychosocial disability. Their goal is to frame swallowing within the contexts of mealtime and socialization in order to develop approaches that can improve quality of life for individuals and their families.

I am guilty of avoiding family dinners and other food-related gatherings. When someone invites me to a restaurant, I eat at home beforehand since I am not sure whether I will find something on the menu that will be dysphagia-friendly. And I make sure that the people I eat with are aware of my swallowing difficulty, so I don't have to explain myself if I eat unusually slow.

My advice? Reach out to a friend or family member. Share your experience with dysphagia with them. It will greatly ease your burden and help you keep a connection with society.

New Possibilities

We live in an era where medical discoveries are more impressive by the minute. Researchers spend countless hours working on solutions for the most prevalent or devastating illnesses.

Is dysphagia prevalent in the world? Absolutely. Do statistics show such a prevalence? Not necessarily. Because dysphagia is an invisible disability, scientists rely on medical professionals to gather data. However, if someone suffers from dysphagia but does not tell a soul, no one will ever know they exist.

When consulting a medical professional, such as a family doctor or an SLP, not only can your life improve dramatically, but you become part of data that scientists need to justify research. It's like you helping yourself... and others.

Thankfully, I am now part of that data.

But I also felt it was my duty as a former editor and publisher to speak louder in the form of a book, and now in a blog. I want to tell you that you are not alone, that there are tips and techniques that could help you improve your swallowing and your quality of life. Not all techniques work for all types of dysphagia. But if you don't try, you will never know.

I realize that in certain countries, medical professionals are hard to come by. Don't despair. Come forward, talk about it, search for tips and support. Remain socially active. One broken part does not define you. You can change the world just by being different and show this invisible side of you. The more people who speak up, the greater the chances of discovering ways to alleviate or treat different types of dysphagia.

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My Personal Tips

I may not be a medical professional, but I have developed several simple tips that have improved my quality of life when dealing with dysphagia.

Here are a some tips from my book:

1. Bottoms Up (page 29): Some people can go a whole day without drinking water. That is impossible when you have dysphagia. Staying well hydrated keeps mucus thin and helps with swallowing. Thicker mucus provides less lubrication to the throat and makes the passage of food more difficult. Aim for at least 1 L (4 cups) of water every day. And remember that although wine makes life sweet, it also dehydrates and reduces concentration while you eat.  

2. Good Vibrations (page 31): Excess throat mucus is most noticeable in the morning. For people without swallowing issues, they manage to clear it gradually with a hot cup of coffee and a good breakfast. With dysphagia, this issue will also arise when we go too long without speaking. I have noticed over the years that the vibrations created by vocal cords actually help loosen persistent mucus. As an alternative to talking to myself, I hum melodies, sing or chant the OM mantra to benefit from the vibrations.

3. Hold Your Horses (page 33): It's a lapalissade to say that swallowing problems force us to slow down. You can't gobble up food when it stops mid-track. We must take our time, savor our meals, and be kind to ourselves. Of course, people may ask if we like the food we've been served or remind us that our food will get cold if we don't eat faster. Eating small portions, and often, is not only good for your health, but also an excellent way to manage swallowing or chewing problems. We're never too old to learn new tricks!

From Me to You

I am of a generation who was told to think of others first; to think of oneself was to be selfish.

If dysphagia has taught me anything, it is to stop and listen to my body first. As flight attendants explain, during pre-flight safety demonstrations, that passengers must secure their own oxygen masks before assisting a child or another person, we, as dysphagia sufferers, must consider our swallowing needs before catering to someone's expectation of how fast chewing and swallowing should be.

In my book, I share a first-hand account of what it means to live with dysphagia and thrive. If my personal experience helps you in any way, I will have fulfilled my wish to help others. By helping myself first in developing simple tricks and easy-to-swallow recipes, it allowed me to gather them into a book so I could help others have a more pleasant life.

Let your hair down and enjoy the holidays!

Joanne

To purchase or learn more about Give Me a Solid, click here.