Interview of a Friend of EDS

We all know that Ehlers-Danlos Syndrome is hard on those who have it but have we thought about those around them? Obviously it is hard on family but what about our friends? Think about it… These friends have seen some seriously weird stuff. They did not ask for the random dislocations in the mall or the numerous surgeries and having to send “hope your feeling okay” texts, but they do. They deal with all of this with such elegance. I am so thankful for all of my true friends that have stuck with me through it all. I asked some of my closest friends to answer a few short questions about having a friend with EDS because I wanted to know their true opinions. I sent them questions so they wouldn’t feel pressured to be nice if I asked them to their faces and over the next few weeks I am going to be sharing their answers. Today is the first. This is from my friend “M”. She has been a friend since high school and has been so supportive of me and anything I have wanted to do. This is what she had to say…

Explain EDS in your own words. 

 EDS is something that is widely unknown and invisible to someone who doesn’t know what they are looking at. Ever since learning what it is I am much more aware of what it is and what it may look like.

Does EDS scare you?

No. What scares me is my best friend being in so much pain and I can’t do anything to help.

What’s the hardest part of having a friend with EDS?

I guess the hardest part would be wanting to be able to understand what she is going through but knowing I never will. I only know what she tells me and I try my hardest to be understanding of what she is going through.

What questions do you have for a person with EDS?

My only question is how on earth do you find the strength to get up everyday in such pain? I definitely don’t want you to not get up, but I really truly admire you.

What do people need to know about your friend with EDS/people with EDS in general?

Don’t let this Invisible thing define her. She is an amazing person. Point blank. She is my hero. She loves with her whole heart and she is someone whom I can most depend on. I’m sure  anyone else with this invisible “beast” can be thought of the same way. They are not their “beast.”

Give the most memorable story you have about your friend and their EDS.

The most memorable time I have with tori is when she first dislocated her knee in class and then the many times afterwards. That first time was scary as mess for me because all I saw was the pain in her face and I didn’t know what was going on. But once I learned, I was the one who would thwart others from being too nosey or disrupting class. I knew that what she needed was to be left alone. Of course unless she told me specifically that she needed help.

Finally, I just want her to know that no matter what I am always there for her. Always. She is my sister and I love her.  ️

*I have got to mention that this is the whole truth. “M” would definitely be the person to say, “What are you looking at?” or “Mind your business” if someone was being noisy or rude when I would dislocate and many times I would have to control her when someone would say things like, “she is faking” or “she just wants attention”. I can’t thank you enough for all the times you have been there for me.*

I love you too and I will always be there for you (even if I am in pieces!).


If you have EDS and you wonder about your friends and family. Send them these questions. Tell them you want to know their true opinions of you and your “beast” (sorry M, I am stealing your word). You will be pleasantly surprised that everyone in your circle is also in your corner, pulling for you. Then share your experience with us!

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