Friends with an HEDS-er?

When you tell someone you have HEDS, I've discovered that people turn into one of these...

The Grandma. 

This is when they give you the "awe poor baby" speech and the sad puppy eyes. *gag* I'm sure they mean well but I'm not a porcelain doll. Leave the worrying to me, I've been dealing with it for a  long time. 

The Avoider. 

If I get injured, it's not your fault. So please, do not feel the responsibility to keep me safe by not inviting me activities you assume I cannot do or will be too tired to do. EDS is a random disability so you never know how I'm feeling. And to top it off, I would like to assure you that I'm not contagious. 

Curious George.

 These people are my favorite. They genuinely want to be informed and encourage you to share your story. These people also tend to be the ones that may ask if doing an activity will be okay for you, but drop it after that.

MiniRant...

One thing people with HEDS struggle with is people not believing them when they ARE tired or injured. I can wake up feeling fine, make plans for that night, then feel like I've been hit by a bus by the evening. There are so many factors that can cause someone with HEDS to not be up for hanging out. Please please please don't get frustrated with that person. Brush it off and make other plans. Yes, it's annoying - but at least you can go make other plans. We are stuck at home in bed, on a couch, in a bath tub... trying to still find the joy in life realizing that you are now going out with out us. It's hard. And for the love of all that is good, DO NOT stop inviting us to things just because we are unreliable. I promise it bothers us much more than it bothers you. If it doesn't seem like it, it's because we have to deal with it on a regular basis. Keep inviting your friend with EDS even if they don't attend anything for an entire month. It's likely not personal.

What you think we do when we cancel...

What we really do...

Do this...
Something you CAN do for someone that keeps canceling is offer to come over to their place and do something like play board games or Mario Kart. Yes, Mario Kart. That way they can do what they have to with out leaving the house and still enjoy your company.

**If you have any personal experiences or bits of wisdom to add please leave comment.