Dealing with changes in eating and drinking can feel very isolating. Few people know that it’s even possible for swallowing to go wrong until its touching their lives personally. But social media is changing that for people experiencing dysphagia today.
While dysphagia is a large umbrella term for many different kinds and severities of symptoms, it can still be helpful to connect with people that are sharing similar experiences on a daily basis. Offering hope, sharing research and resources, encouraging advocacy, and even a little humor, can go a long way in this community. I have been actively looking on popular platforms in the hopes of finding people that are giving candid looks at what life is like for them currently and where they have come from as well. There is a range of countries, personalities and conditions, so I hope that you are able to find an account or more that can help you feel more connected and heard. I will do my best to keep adding more accounts as I find them. And if you are someone with an account that would like to be added to the list, please feel free to connect with me on social media or email me at SameMenuAmy@gmail.com.
Facebook Groups
Dysphagia Diet Dilemmas and Solutions
A group that shares questions around following dysphagia diet guidelines. It is public so it does tend to have more marketing type posts but is still a space where people trade inspiration and ideas.
Dysphagia Foods & Recipes Group
This group is fairly active with sharing modification ideas and asking questions related to eating some of member’s favorite foods. This group is technically private, but I found the moderator to be quick to get requests to join addressed.
Instagram Accounts
@dysphagiachef
From Cork UK, Niamh has been sharing photos of the dysphagia-friendly foods she creates for care facilities for years. More recently, she has developed Ocras, a line of frozen premolded foods designed to assist in faster and more appealing options for those on texture modified diets.
@dysphagia_food_vienna
An Austrian-based experimental kitchen out of Vienna shares some beautiful presentations, using molds and 3D printing techniques, to inspire your plating possibilities.
@gastronomiaadaptada
This Brazilian chef offers inspiration examples and coursework for replicating inspired dysphagia dishes. She also participates in live discussions about challenges and solutions for adequate nutrition and enjoyment with meals when required modified textures.
@oakhousekitchen
Based out of Nottingham UK, this dysphagia catering team shares their classes in commercial cooking. Even if you are a home cook, their posts can still offer inspiration for how to prepare and present some national favorites.
@texture_modified_food
Amanda Orchard offers inspiration for presentation of texture modified foods, utilizing 3D food printing and molds to add visual interest to dysphagia diets.
TikTok Accounts
Bxnnnaayy @bennnaayy
Creating stories about his experiences with eosinophillic esophagitis (EoE), Bxnnnaayy has taken his followers to appointments, talked about real cravings as well as even some food texture trials. Using a great sense of humor and even sharing some exciting life moments, he has found a way to bring awareness to conditions he has as well as keep perspective to the person he is beyond those conditions.
ChronicNrsSteph @squasch31
This nurse has been sharing how she is navigating chronic conditions including GERD, ineffective esophageal dysmotility and vocal fold dysfunction following a neck injury. Along with regularly sharing her medical updates, she also has offered travel vlogs, medical product reviews and cute pet rabbit videos. She has been active for a couple of years now so she has a larger set of videos to check out around these topics.
Emily Guess @emilyguess95
Along with a healthy dose of dog and baking, this mom has shared multiple videos about thickened liquids for her daughter.
FromJohanna @fromjohannaelizabeth
This account of a mother with a son with special needs including dysphagia shares food trials and explaining thickened liquids. Along with sharing her art, she shares her perspectives on being a caregiver.
Penny @dysphagiatravels
This creator’s account focuses on how she has worked with fueling her body while she continues to socialize and travel following her diagnosis. Penny reports that her changes are due to late onset radiotherapy damage to here head and neck while addressing tongue cancer. While the treatment was about 22 years ago, she only recently started having problems swallowing food and liquid about 3 years ago. Penny is eating foods at a pureed diet texture and slightly thickens liquids to address frequent coughing. While she is hopeful for a future where restaurants are more aware and offer a wider puree menu, she is not letting that keep her from traveling to have new experiences.
Sara Michaels @xosaramichaels
Sara has shared multiple posts about her 5 year journey with dysphagia, including the celebration that she is no longer experiencing the condition! Diagnosed with EoE, she shared information about testing and treatments as well as beach life.
Reddit Communities
r/dysphagia
This community, founded back in 2015, has over 10 years of conversations saved around the topic. It’s common that a question you have will have been asked by someone else so it can be a resource for answers around meals as well as testing, treatments and products. It is moderated by a speech-language pathologist (SLP) to help avoid shaky science or predatory practices. You will find the community is a mix of professionals and people experiencing dysphagia of all ages.
r/functionaldyspepsia
For a section of those with dysphagia, there can also be symptoms of functional dyspepsia, a condition that impacts the mind-gut connection. The motility of the digestive system can be impacted and can lead to hypersensitivity to food in the system. This community shares experiences, their own paths to treatment and ask questions.
r/gastroparesis
A condition that impacts the muscles ability to push food through your digestive system, this group can have overlap with some people experiencing dysphagia. When the stomach has difficulty emptying, it can lead to a back up that is witnessed higher up in the system and disrupt eating and drinking. Closely tied with functional dyspepsia, members discuss how they and their care team are managing it and ways to compensate in the meantime.
r/GERD
There are a lot of people experiencing dysphagia that have GERD diagnosed along their journey to treat their swallowing changes. Discussions of dietary changes, medication options and lifestyle choices along with general questions and progress stories can be found to help.
r/phobiaPseudodysphagia
One community founded for support and problem solving of the psychosomatic fear of choking or even just swallowing generally. A newer community, founded in 2024, it includes some personal accounts of progress.
r/Pseudodysphagia
More established, back in 2018, this subreddit also addresses the fears around swallowing. While some people participating do have a physical source to their swallowing changes, they may not have found it or may also have a mental component that is impacting their physical abilities.
All information contained in this article has been offered by the users publicly and any opinions shared on their accounts are theirs only and do not necessarily reflex the opinions of Same Menu.
Looking for more?
You can also find support and accessibility resources or learn about fortifying your foods as well.
Every recipe and resource here is designed for texture sensitive eaters: from dysphagia to dental issues to picky eaters. Get recipe roundups and practical tips by joining the mailing list.
