As a Speech Pathologist, I have always been on the clinician side, working with patients with dysphagia. I have, of course, had my times when I aspirated this or that, and thought, how do people go through this so often?? It is painful!
I started a couple of Facebook Dysphagia groups a few years back. I decided that people who have dysphagia and their loved ones deserve a place to connect so I created the Dysphagia Support group.
The group centers around people who have dysphagia or parents/caregivers of others with dysphagia. It has been a place to go for questions or to share experiences. One of the most active members of the group is Karly.
Karly has offered great support and words of encouragement for others. She blogs about her experiences and she has an article published through the National Foundation of Swallowing Disorders. You can find the link for both below.
Below is a message from Karly. I would love to start a part of my blog dedicated to people with swallowing difficulties to share their stories and experiences!
“Two years on, and I’m still struggling with dysphagia. This has been the toughest thing I’ve ever been through. With everything I go through in life, I always make it my goal to reach out to others who are going through the same thing. I am doing this when it comes to my dysphagia too. A lot of this is done through Facebook support groups.
A long while back, I came across an amazing dysphagia website. I have interacted with a few professionals from the site and they are lovely. I decided I wanted to give something back to them. I did this by writing an article which was put up on their website. I got some responses from other
people who are struggling with dysphagia and it helped me to have that kind of interaction.
Dysphagia isn’t just about swallowing. It can affect us in so many different ways. I have a blog to display this. I share what I go through, the good, the bad and all things in-between. I’m not very consistent with my blogs. It’s something I have to be ‘’in the mood’’ for. It can be hard for me to
reflect on things, so I blog spontaneously.
My dysphagia is so self-limiting. As I can only manage liquids, I don’t have enough energy to do the things I want to or lead a normal life to put it basically. It’s a really hard thing for me to think about.
I don’t know what my dysphagia is. I think that is the scariest thought of all because it means I don’t know how to make it better and start my life.
Sharing your lived experiences can be one of the hardest things to do but it is the most powerful. I don’t want anyone to have to go through something like this alone. This is my biggest motivator for sharing my journey with dysphagia.
If you’d like to know more about me and my dysphagia, click on the links below.