What were your initial thoughts about being diagnosed?

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?

Being diagnosed was a very hard time as I can imagine most with EDS will agree. The rush of emotions isn’t something that someone can really prepare for. They say there are stages of grief. Well, I think that also applies here. There was a clear process that I had to go through before I truly accepted my reality.

At first, when I started to hear the words Ehlers-Danlos Syndrome I thought “oh well that’s not it. That sounds too fancy for a torn ligament or broken bone.” Boy was I wrong. As I started looking into EDS more and more, I thought, “oh gosh, this is more serious than what I have.” Yeah, you guessed it. I was in denial. I started telling myself that I was making it up and it was all in my head. Yeah, that’s not healthy. I was getting annoyed that the doctors couldn’t find the “easy fix.” I told myself that the surgeries would fix me and when they didn’t (big shock there… not.) I would get very upset. Right again, anger. It was a hard time for me and my family. After all of my hope being crushed by the failed surgeries, came the hardest part of being chronically ill. Depression. This is hands down the worst I have felt in my entire life. Depression is something so taboo that people don’t like talking about it or even thinking about it. It is hard to understand and there are different levels to it. This is how mine progressed.

Back when I was first dealing with some of the draw backs and the difficult times after surgery, I started to feel down. My friends would ask me to hang out but I couldn’t because they wanted to go walking on the trail or play frisbee. I wanted to go more than anything but if I did then I would have been miserable. I knew I would be in so much pain the next day but sometimes I would get the courage to attempt the pain to go. I would mention it to my parents and always got a response similar to this, “you’ll hurt yourself.” It really started to wear down on me. I know my parents only meant well and that they were actually telling me what I already knew and did not want to admit but the idea of being so limited for the rest of my life hurt. I started to see a change in myself to the point that I did not like who I was. I would be the same old girl everyone knew in person but when I went to my room at night, I would hate on myself for being broken. Sounds like a dumb teenage movie, right? Well, what people don’t tell you is that those movies aren’t all wrong. It got to the point where I couldn’t take it anymore. I was so disgusted with myself for being broken that I finally opened up and told my parents that I was feeling really down. I was scared of how much I hated myself and my body for betraying me. I think I scared my parents as well. The depression was the hardest part to get through but with some help from my family and close friends, I made it. Now that I have had some time to understand the way my body works and what I have to do to make sure I am doing okay, I am a much happier person and I think that I am stronger for having been through the tough times. Sounds cliché right? It’s the truth though. I am glad to know what causes my pain and problems and I am at peace with what I have. I love to talk about EDS because I want everyone to understand what it is and how it effects us. I want to help others with chronic illnesses to be able to open up and express themselves because I don’t want anyone to bottle it the way I did. I have still struggled with the fact that I am chronically ill but I live for the small things. The EveryDay Successes. Hah, see what I did there. 😉


If you or a loved one has dealt with something like this, please comment or direct message me if you ever feel down or need a person to talk to.

2 thoughts on “What were your initial thoughts about being diagnosed?

  1. tntdesignsncgreenville says:

    I am so proud of you and all of your accomplishments throughout this whole ordeal. You are such a strong woman and even though you have been diagnosed with this chronic disease, you have climbed your way to the top, even when you hit rock bottom. I’ve seen your good, bad, and some of your worse days and I know it’s not over, but I do know that no matter how bad you are feeling, you will continue to keep rising and never let this invisible disease put you down! I Love You Sweetheart❤️ You are truly one of my biggest heros!


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