10 Things I have learned from living with Ehlers-Danlos Syndrome

1. It is not that bad to be spontaneous

When I was younger I had plans and lists for my whole life. I knew where I wanted to be when I become 30 years old. But then my disease hit me and I was not even able to plan 1hour in advance. I learned the beauty of just deciding things in the moment without prior planning. There are so many things to discover if you do not expect them. You might miss something pretty if you just run from one planned thing to another. There are beautiful things all along the way that are just waiting to be discovered.

2. Never say never

Honestly, I hadn’t even the slightest idea of how my life would change from one second to another. And I would not even partially expect what hit me. There were points throughout my journey where I thought I could not make it through. But I did it. No idea how, but it somehow worked. And now, after 5 years of being severely disabled I quit saying, “I can never do that.“ You know why? Because even if I think I cannot handle it, in the end I go through it and become stronger and stronger. Never underestimate your ability to adapt
to a new situation. Never say never.

3. Never say: not now, it is the wrong time for this…

I made that mistake a lot. While I was young and healthy I kept saying now is the wrong time for learning how to dance Salsa or it is the wrong time to travel to foreign countries. All I wanted was to plan my career. I did not do a lot of things even if there for sure would have been time for it. Well now, with my joints all over my body damaged, I am not even able to head bang. But as you know, never say never. I hope there will be a time when I can achieve all the goals I always thought it was the wrong time for. There simply is no right time, but if you can, just do the things you want to do right away.

4. Do not ever take your family and friends for granted

A disease like EDS is way harder to live with if there is no support system around you.
Doctors are a huge part of this system, but are not as important as family and friends. Luckily I have all my loved ones on my side. They do not doubt what I am saying, they support every decision I make. Unfortunately not everyone has that luck. When I was younger my family was always there and I somehow took it for granted because I simply did not know better. But now, I am very grateful that there is always someone who travels with me to my appointments, who drives me to physical therapy and so much more. We cry, laugh and shout together and in the end EDS brought us closer together.

5. I am worth being loved

Some time ago, I wrote an essay about how I struggled with myself because I thought
I would not be worth being loved. It is hard to see my true self without anything I could define myself by. I was not sure what I had to offer to my boyfriend especially during the time when I could not accept my limitations. Over time it became easier and I saw that I was so much more than only chronically disabled.

6. My disease is not everything I am.

I know I spend a huge amount of time reading about EDS, watching lectures, writing articles and more disease related things. But this makes me stronger. Educating others about my condition seems like a good goal to me. What I also learned during the past 5 years is how to plan and organize doctors’ appointments, appointments with authorities, physical therapy, how to organize traveling through whole Germany just for one appointment, and even traveling to the US just because of my health. I found out how to fly with disabilities, how to talk other languages and many more things. I am exactly what I need to be in different situations: I am a fighter, a lawyer, a physical therapist, a friend, a child, a partner, a financial advisor, an event planner, a travel guide, a psychologist, and a health advocate.

7. There is always something I can do

Not being able to work anymore is very hard for me. I was always independent and could care for my own needs. I had no idea what person I am without my job. I asked myself, “Is there something else you can do?” Because of my unpredictable flares of symptoms I needed something that I could do once in a while with breaks of sometimes more than one week. What would that be? First I tried all kinds of handworks, which I really do not have a talent for. But it gave me the feeling of successfully completing a task. I needed a sense, a purpose in life. After a while I started to write in a diary again, which I have been doing all my life but had quit shortly before I became sick. I found out that writing helped me a lot with my emotions and that I am not so bad at it. That’s when I created a blog, then a website, a forum and wrote many articles about EDS and essays about my life with EDS. There are days I cannot get up from my sofa but there is always a little thing I can do.

8. I should treat my body with respect

It took a while until I realized I cannot force my body to work. I needed to accept my body’s limitations. This is also something I took for granted. And honestly, I have never treated my body that well. I ate a lot of bad food, drank a lot of lemonade and other crap. Then the comorbidities of EDS joined my journey and mast cell activation prevented me from a lot of foods I loved. This brought me to the recognition that being a picky eater is not cool at all. I discovered that green things can taste very good, that Ethiopian food is actually one of my new favorites and that with a lot of discipline I can improve my overall health. Do not get me wrong, eating more healthily has not improved EDS but it might just give me a little more energy, prevent me from getting additional flus and other “normal“ diseases which can extremely worsen my condition.

9. Being bluntly honest is not bad at all

There were a couple of moments when I thought I would not survive. Especially with the
Cervical spine instability some symptoms were quiet concerning. These happenings showed me that there is no time for talking around without coming to the point. There is no time for lying to people. I started to tell everyone what I thought when I thought it. First I did not find that very helpful as some people were kind of upset with me but in the end it is the absolute right thing for me. I do not want to waste much time with small talk or with people I do not like. I want to use the little good time I have only for great conversations.

10. I love my life

Not much to say about this one. There is only this one life and I try to make the very best out of it. After I got my EDS diagnosis, with the acceptance of it I became happier and more relaxed. I do what I can to make my dreams come true. Yes, EDS sucks, but I am not sure if I would want to change anything in my life right now. I do not even know how I felt when I was healthy. This is my new life and I love the way my personality has changed throughout my fight. Not sure if I would be the same without EDS.

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About the Author: Karina is a bright young woman living in Germany. She has a blog and much of the posts she writes in her second language, English. Check it out here.