In Bed with hEDS: My Symptoms

Addison Smith
10 min readNov 15, 2023

A list of the 39 symptoms and effects of hypermobile Ehlers-Danlos Syndrome that I have been diagnosed with over the years and more.

Since completing my first run of Ask Addi, I have turned to raising awareness for the disability that affects me and my child, hypermobile Ehlers-Danlos Syndrome (hEDS). This genetic disorder weakens the connective tissue in the body, causing myriad effects. This limited video series, filmed on the days I have to call off from work due to hEDS symptoms, examines those effects.

Hello, humans. I’m Addi Smith.

Welcome back to my bed, as I have called off from work yet again. In this episode, I will do something I usually don’t like to talk about. I’m going to list everything that is wrong with this body- everything that can be connected to hypermobile Ehlers-Danlos syndrome, or h.E.D.S., hEDS.

Welcome to In Bed with hEDS.

I don’t like talking about this because it’s personal. And frankly, I don’t like people knowing what I’m dealing with because I don’t want to be seen as weak or frail. In certain ways, I am, and I don’t like admitting it. Also, there are people with the same disorder who have more going on than I do. Still, I think people need to know what hEDS is so that they can understand this disability.

Therefore, I have gone over my medical records and read through the literature on hEDS. I’m just going to list everything I’ve been treated for that shows up in that literature- no explanations, just a list.

Now, there is a caveat. I can’t say that everything I will list is directly caused by hEDS. That’s not how genetic disorders work. All I can say is that there was a greater chance of these things going wrong with me because of hEDS.

When I say list, I mean list. I have bullet points in front of me, and I’m just going to read off everything I’ve been diagnosed with and give you a very brief description of the more exotic diagnoses like:

Clinodactyly: The bending or twisting of fingers or toes, like my big toes
which bend in and up, and my index fingers bend to the middle toward the middle finger and twist downward.

--

--

Addison Smith

I’m an LGBTQ+ DEI educator, activist, and writer living in the Midwest with my cat. Call me Addi. They/She. Booking and more info at https://addisonsagenda.com