Dysphagia: A Disorder Understood by Few
Up to 22% of adults over the age of 50 live with dysphagia or swallowing problems, and yet, this swallowing disorder largely remains a mystery to the general public. A recent survey found that, among participants who were not linked to healthcare occupations, 71% had low-level awareness of dysphagia [1]. Even people currently living with dysphagia have admitted that although they knew about swallowing difficulties, feeding tubes, and aspiration, they had not heard of the word ‘dysphagia’ until they were diagnosed with it themselves. As one woman described, dysphagia is “not known, not understood, hidden, and an invisible disorder”.
What is even more of a concern, however, is the spread of misinformation regarding dysphagia. Unfortunately, out of the scarce knowledge that the public does have about the disorder, much of it is heavily tainted with myths and misconceptions. Because dysphagia is life-altering for those who are affected by it, it is important to be adequately informed about the disorder.
We reached out to individuals living with dysphagia to ask them what myths are currently circulating that they have come across. We compiled five of the most common myths below – and busted them here for you. Maybe you have a friend or family member who just shared that they have dysphagia. Maybe you’ve been recently diagnosed yourself and want to learn more. Or maybe you simply want to educate yourself on a new topic. No matter the reason, know that by educating yourself on the following facts, you are taking the first step towards making people with dysphagia feel seen, heard, and understood.
Myth #1: Dysphagia only occurs in older populations.
Although dysphagia is common in older populations because the muscles used for swallowing naturally become weaker with age, dysphagia can actually occur across all ages – even in newborns. Dysphagia impacts such a broad range of ages because of its varying causes, many of which are unrelated to aging. Some of these include neurological causes such as stroke, traumatic brain injury, or brain tumors, congenital conditions like cerebral palsy or cleft palate, muscular conditions, and obstructions that narrow the throat and may make swallowing difficult [2].
Myth #2: Dysphagia is caused by a fear of swallowing.
This may be one of the most common – and most harmful – misconceptions about dysphagia. When asked, almost all interviewees expressed that someone, at some point, has said a version of this statement to them before. As one interviewee put it, “If they can’t see [the disorder] or understand it, they assume it’s mental”. In reality, dysphagia can be psychogenic; however, most cases do not fit into this category. The majority of dysphagia cases are due to structural or functional impairments, like the ones described in the previous section. To people who have dysphagia, hearing from others that “it’s all in your head” can be triggering and even insulting. Many of those affected by the disorder are heartbroken that they are unable to eat foods they once adored and cherished – fear was never a factor.
Myth #3: It is obvious when someone has dysphagia.
Despite what some may think, you cannot look at someone diagnosed with dysphagia and immediately detect it. In fact, one interviewee said that their experience has been the exact opposite: some friends and family are still only finding out that they have dysphagia 9 years after their diagnosis! There are many reasons why dysphagia may not be immediately noticeable: for one, many people with dysphagia have found “social hacks” that allow mealtimes to run smoothly, leaving others unaware of their underlying swallowing difficulties. These hacks can include preparing texture-modified meals for themselves before company comes over, looking at restaurant menus beforehand to determine what they can safely eat, or even avoiding eating in front of others altogether.
Another reason dysphagia may go unnoticed is that not everyone exhibits external symptoms. For example, silent aspiration is when food enters the lungs by accident and can occur without any overt symptoms, hence the ‘silent’ in the name.
Finally, even when symptoms are noticeable, they may be perceived as something else. One interviewee expressed that strangers often think they are sick when they cough; “People start moving away from me, and look at me like I am spreading a virus to them – it is so embarrassing”. Others have shared that their friends and family simply thought they were a picky eater for years, when in reality they were simply avoiding foods they knew they couldn’t safely swallow.
Myth #4: Having dysphagia means being on thickened liquids for life.
Many who are recently diagnosed with dysphagia feel a wave of panic or sadness at the thought of only having thickened liquids for the rest of their lives. However, while this may be the case for a few, it is definitely not the case for all. Thickened liquids are not a one size fits all approach; it is simply one option to manage dysphagia of many. Some people, after time and treatment, can move to a less-restrictive diet beyond liquids. This can include pureed, minced and moist foods, as well as soft and bite-sized foods. One interviewee described herself as a “graduate of the thickened liquid program”, and hopes that others with dysphagia realize that being on thickened liquids is not always a permanent solution.
Myth #5: Having dysphagia means you can’t have a ‘normal life’.
“When I tell people I have dysphagia and what that means, they sometimes react as if I’m near dying. They’ll gasp and say ‘I’m so sorry’. I want to tell them that I’m just like them – I can live just like them”. Many individuals with dysphagia have experienced a similar reaction to their diagnosis, and although each individual and their circumstances are unique, it is entirely possible for a person with dysphagia to engage and participate in life just like everyone else. As described in previous sections, many individuals have found “social hacks” that have allowed them to fully engage in social situations. Although more preparation and caution may be involved, it is still possible to have a ‘normal’ social life.
As one interviewee put it, “There are people young and old on feeding tubes who live as normal a life as they can and do all the activities that other people enjoy”.
Busting Myths on Dysphagia: What Can You Do
By this point, you have probably realized that along with many other disorders, dysphagia is often misunderstood. To people with dysphagia, some of these misconceptions can be devastating. By educating yourself and others about this topic, know that you are making a meaningful difference for those with dysphagia. If you would like more information on this swallowing disorder, please follow the links below.
Resources
- “Swallow: A Documentary – Dysphagia”, developed by the National Foundation for Swallowing Disorders
- Free Online Course: “Swallowing Difficulties and Medicine”, put on by the National Foundation for Swallowing Disorders
- Dysphagia Research Society
References
[1] McHutchion, L. D., Pringle, J. M., Tran, M.-H. N., Ostevik, A. V., & Constantinescu, G. (2021). A survey of public awareness of dysphagia. INTERNATIONAL JOURNAL OF SPEECH-LANGUAGE PATHOLOGY, 23(6), 614–621. https://doi-org.login.ezproxy.library.ualberta.ca/10.1080/17549507.2021.1912179
[2] NHS. (2021, March 4). Causes of Dysphagia (swallowing problems). NHS choices. Retrieved from https://www.nhs.uk/conditions/swallowing-problems-dysphagia/causes/
