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!!