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!

What Is the Most Misunderstood Aspect of EDS… Revised

I have a crazy schedule most of the time due to going to school and teaching. It is hard to keep up with things some times. You can relate, right? To deal with this I typically write these articles in advance and schedule them to go up on Tuesday’s and Friday’s, with the exceptions of the daily update posts. When they post, I go back and reread them (for the 10th time) and this time, I read it and was not happy with the post. Continue reading

What Do You Think is the Most Misunderstood Aspect of EDS?

I think that the most misunderstood aspect of EDS is the most obvious one. You can’t see EDS. You can’t look at someone with Ehlers-Danlos Syndrome and think “oh yeah, I can tell she has that.” Being invisible makes it harder to understand for those who come in contact with a zebra. Understanding a broken arm is easy because you see the cast or psoriasis because you see the red skin. It is impossible to see EDS in everyday life. You can’t see the pain behind someone’s eyes without really knowing them and you can’t tell when someone is falling apart from the inside out. Because of this people mistake those with EDS as complainers and hypochondriacs. It is important to understand that everyone has struggles. Some are larger than others but all are important. I struggle with this. I struggle to understand why people can’t just stop and take a moment to think about what others go through but I know that if I was not going through something myself that I may not do this either. This is why I started a blog, to help others understand that just because I look okay does not mean we feel okay. We are literally living through a battle under our skin but smiling through it. Please, next time you see someone take a moment to understand them before you say something about them.

Top Things to Pass the Time When Stuck in Bed

What are your top things to pass time when stuck in bed?

With Ehlers-Danlos Syndrome there is a lot of much needed down time. Everyday activities are really hard on our bodies. It is hard to maintain a healthy life with we are in constant pain and the pain wears us down to the point that dislocations and subluxations are more prone to happen. It is difficult to understand how going to the grocery store can make us miserable but it’s wear and tear done to our bodies. When you body is fighting to stay together it is important to give it some rest. But the pain isn’t what makes us miserable all the time. Sometimes it is even more crippling to be bedridden because of the pain. So what do we do during that time? Good Question. Continue reading

How Do You Feel About Your Current Treatment Plan?

How do you feel about your current treatment plan?

Treatment plan? What treatment plan? HA! Right now, I do bare minimum to deal with the daily pain and dislocations. When I hurt, I rest the limb and try and distract myself from the pain. When I dislocate, I rest, ice the limb and sometimes take some advil or something over the counter. I try to avoid medicines as much as possible because of the damage they can do to your body. Other than ice, rest and some advil, I have no other treatments other than taking a hot shower to relax. I am doing fine without extensive treatment right now but I know that I will need more and more as life progresses. I think that it is easier for me to live with such a relaxed treatment plan because I am able to make the adjustments I need to deal with day to day life. For instance, at home I use a walker to help navigate and I sit when needed. I also have an amazing family that is there for anything I need. My brother is a pro at setting up my ice machine and I can’t thank him enough for everything he helps me with. I am happy that I am on a minimum effort treatment plan right now because I am young and I do not like the idea of being held back by the plan set in place for me to survive. We will see what the future holds but for now, I am content. 

Healthy Habits and Why They Help

Another day, another post. So the question is…

What healthy habits have you adapted since getting diagnosed?

Since being diagnosed I have changed some of my habits but I haven’t changed tremendously. These have included… Continue reading

Laughter is the Best Medicine… Right?

So, we all know that I have Ehlers-Danlos Syndrome and that it makes my life just a tad bit harder sometimes. I deal with dislocations and pain on a daily basis but I feel that it is important to try and describe the severity and ridiculousness of my dislocations. If someone without EDS dislocates it has to be some sort of accident or tragic event. It does not have to be so dramatic for me. Listen to this story about how I dislocated yesterday…

I was walking into a store to grab some stuff for school and I sneezed. Whelp, that was it. I sneezed and somehow that dislocated my knee! Crazy right? That small amount of movement made a totally different part of my body dislocate. This is what it is like for most zebras. The smallest things can make us dislocate. I have dislocated sitting, standing, laying down, sitting in class (a friend could tell you many stories about this), etc… As you can see, it takes almost nothing to make me dislocate. The point of me telling you this is not for you to feel bad, trust me I thought it was hilarious, it’s so that you understand how fragile most of us are. To everyone around me yesterday I was just a girl who was laughing because I sneezed, they probably thought I was being weird.  What others didn’t realize was that I was laughing at how ridiculous that dislocation was. No one would have known I dislocated because I was laughing through the pain. (Laughter is the best medicine, right?) With this post, I am only asking you to understand how fragile people can be under the skin before making snap judgements based on appearance. We may not look sick but under the skin is a whole lot of zebra print.

If you have any funny dislocation stories you would like to share, please comment them down below.