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.
The following is a list of questions answered by my fiancé. I asked him to answer questions related to what it is like to have a spouse with EDS and have not changed any of his answers. I hope that this can help give insight into how others affected by EDS handle it and what their lives are like. I am so thankful to have someone as supportive and loving in my life and want to thank him for putting up with me and all my zebra tendencies.
- Explain EDS in your own words.
EDS to me is a chronic “invisible” disease that limits the mobility of one’s body from accomplishing certain everyday obstacles.
- What is the hardest part about having a spouse with EDS?
I think for me, the hardest part is keeping in mind about how much we do together in a single day, whether it is going to the grocery store, hanging out with friends, even long car trips, makes it difficult for her at times, and that’s something that I always have trouble with.
- What is the most rewarding part about having a spouse with EDS?
The most rewarding part about Tori having EDS is that I have gotten to see over the last 4 ½ years, how strong she has become. Even though she is in constant pain 24/7, she never lets it get the best of her.
- In your opinion, what is the hardest part of your spouses life with EDS?
I think the hardest part about Tori’s life with EDS is that she is in constant pain. The smallest tasks can sometimes be almost unbearable for her to get through, but I’m not sure how she does it, she always seems to reach her goals without even slowing down!
- Does having a spouse with EDS differ from having a spouse without EDS? How? Why?
Yes, it does differ having a spouse with EDS, due to the fact that it is so rare or invisible if you’d rather. You can’t see it, so you never know how someone with EDS is feeling at the time, unless you really understand what EDS is.
- What are the challenges that your spouse faces?
She experiences different challenges daily. It can be getting out of bed, taking a shower, picking something up off the floor, or even holding her cat.
- How do you think it will affect your future together?
From what I know about her case of EDS, is that as it progresses, her ligaments will slowly begin to get stretchier and stretchier to the point where she may have to begin having surgeries to fuse her body parts into place, but no matter what, the more that we learn about it, the easier it is to plan out our day to day routine(s).
- Does it scare you?
Excuse me, but yes, it scares the Hell out of me at times. I’ve been there for good days, bad days, and worse days, and it’s never easy going when it’s a bad day, let alone a worse day. A lot of times I feel like I am helpless when she has dislocated or subluxed. I have no idea of what pain she may be in or what I can do to make things better. Luckily she is able to coach me through a lot of times what she needs, and what I can do to help her and make her more comfortable.
- What are you most proud of when it comes to your spouse having EDS?
How strong minded, dedicated, and motivated that she is. Always going that one extra step to make it through the day, hurting or not, always helping someone else in need, and how amazing of a person she has become despite her disease and discomfort.
- Anything you wish to add?
(Personal Message): Tori, you are truly and inspiration and have played a huge roll in helping me understand this invisible disease that you suffer from on a day to day basis. I can’t imagine what you go through, only what I see for myself. You are one of the most amazing people that I have ever met, become friends with, and have had the chance to get to know you on a level that many others haven’t. You are a living superhero. No matter how bad you may be hurting, you continue to strive to make a difference in other people’s lives. Always putting others before yourself, and helping them make the best of their situations. I Love You!!
Before I begin this post, I want to mention that this is something I never talk about but I promised myself that I would put it all out there in attempts for those of you reading to better understand the zebra lifestyle. Please understand that not all zebras feel this way and that this is just the way I feel about my situation. Also, as I have said before I encourage comments and questions but remember, “if you don’t have anything nice to say, don’t say anything at all.”
The question for the day is…
What were your initial thoughts about being diagnosed?
When you are chronically sick, it doesn't just effect you. Unfortunately anyone who is near you is part of it also. But have you ever wondered how it changes your friendships? I think we all have.
Being sick is something that can make or break your relationships. As a healthy person it is hard to understand those who are sick and put yourself in someone else's shoes. On the other hand it is hard to be a sick person and not feel guilty for being sick or jealous of those who aren't. It's a scary cycle but it is one we deal with everyday.
As a person will a chronic illness, I know that some of my relationships have been strengthened and some weakened and some all together cut. Some of the relationships I have that are strengthened are my parents and siblings. We are so close because I am forced to rely on them more than I should. At 22 you shouldn't have to think about how bad you are hurting and how you need a ride to the doctors because you may not be able to drive. It's terrible but my parents and siblings are so supportive and helpful.
Not all of my relationships have flourished quite as well though. Some of my friendships have been weakened because I am not able to do the things that my friends wanted to do. I mean I can't go on those hiking trips or go play frisbee in the park. After hearing, "I probably shouldn't" or "I'm hurting too bad" people will stop inviting you places. I get it completely. I feel bad that I can't do these things and trust me it is an internal struggle knowing what I want to do and what I can't do. I don't blame these people and I'm not mad. I understand that EDS is hard to deal with and I respect those who have shied away.
I get how relationships are different for everyone but as a person with a chronic illness it is hard to make and maintain friendships. I know who my friends are because they have been to hell and back with me and stayed by my side through it all and for that I can't thank them enough! I Love You Guys!
So recently I found 29 quotes from people with Ehlers-Danlos Syndrome explaining what it is like to live with EDS. I am going to start posting them periodically to give a voice to those with EDS and try to give you guys more than just my opinion. This is the first of many to come.