#ThisIsMyEDS Part 1

Blog post

[Photo shows three spoons laying on a laptop keyboard, overlaid is clipart of torn white notebook paper with a red paper clip. On the paper in black text reads, “#ThisIsMyEDS Part 1: What EDS Is Like On My Body”. Below the text is a picture of the profile of a zebra head. In the bottom left corner is the blog banner that reads “Thee Crohnie Grace”]

“For EDS Awareness Month I’d like to try and uplift the DIVERSITY of EDS and how it impacts our lives as individuals. EDS manifests itself on a wide spectrum and our symptoms can be fluid as well.” -Annie Segarra


You probably know Annie from her Youtube videos where she talks about disability and diversity. Annie also has Ehlers Danlos Syndrome and is an activist when it comes to spreading awareness. Thus came her idea of EDS tag. It includes three separate parts to be released over the month of May (EDS Awareness Month). This is the first part which is mainly a bit of an introduction and just covering some of the basic stuff, so let’s get started. And if you have EDS, feel free to join along and tag in with the hashtag: #ThisIsMyEDS

1. Name, Pronouns and EDS Type: So my name is Grace, my pronouns are she/her or they/them (Gender is a social construct) and I have Classical EDS which was formerly known as Type 2.

2. How Are You Feeling Today? Overall I feel pretty decent, of course I’m also writing this after taking pain medicine and Benadryl haha.

3. Can You Explain EDS in a Sentence? Ehlers Danlos Syndrome is a genetic connective tissue disorder in which the body doesn’t produce enough collagen or produces defective collagen.

4. Whats Your Favorite Analogy for How EDS Feels? OR What EDS is Like? For me it feels like my  joints are like wet spaghetti or like I’m being held together by very old rubber bands that stretch way more than they should and snap very easily.

5. What Are Your Symptoms and Comorbid Illnesses/Conditions? I have chronic pain in my joins, sometimes muscle pain from bruises, hyper mobile joints that frequently subluxate or dislocate, stretchy skin, trouble walking, poor memory and trouble regulating body temperature.  Comorbid illnesses such as POTS, Gastroparesis, Cluster Headaches and Crohn’s Disease.

6. How Does EDS Impact Your Daily Life? Well I have to use a walker or wheelchair now to get around, I’m in physical therapy twice a week, I’m tube fed, I have an ileostomy, I have to take medicine in the morning, afternoon, and night. I’m unable to work, but I am still in college. I very seldom leave my house except to go to college or doctors’ appointments anymore. I am often in too much pain to do much of anything except stuff I can do from bed or from a couch, I’m always exhausted no matter how much sleep I get and have trouble getting to sleep because of pain or here recently because of cluster headaches. It can sometimes do a number on me emotionally because there’s so much I want to do any I’m unable to do it. Such as the fact I didn’t go to my latest LARP event because I was feeling so horrible.


This concludes the first part of #ThisIsMyEDS. Part two will be done on the 15th, and part 3 will be done at the end of the month. To learn more about EDS check out The Ehlers Danlos Society.


[Image shows me with strawberry blonde hair without my glasses, my makeup is on and my feeding tube is dangling over my arm. I’m wearing a white halter tank top and wearing a Mjolnir necklace. Along the bottom in black text reads #ZebraStrong and has the face of a forward facing zebra.]

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