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Please know that your feelings are valid.

More often than I should I see Zebras (people with EDS) posting about how someone says they shouldn’t complain because they “don’t look sick”, “seem fine”, “weren’t on crutches yesterday”, etc. It is complete insanity to expect someone to “look sick”. It’s outrageous to think that you understand what someone is going through by looking at them. Every human being has skin that houses emotions such as: joy, heartache, pain, excitement, and more. No one can read those things by looking at someone. No one should feel a certain way about themselves because someone else feels that you don’t deserve your feelings. I have done this myself. I have condemned myself for being sad or hurt by my pain, because someone else couldn’t wrap their close mined brain around it. We, as a whole, need to be more understanding. I have had to learn to explain and not attack those who don’t understand. We can educate those who have misunderstandings. This can help both parties in the conversation. The Zebra can eliminate some stress by talking about the pain and heartache they experience, while the other person can expand their knowledge and (hopefully) empathy.

To those who don’t think their feelings are valid, you are allowed to feel bad, sad, mad, glad, or whatever you need. You are the only one who understands your feelings and what you need at the time. No one should try and challenge your feelings because they can not possibly understand the way you feel. Please know that you are allowed to feel and express yourself in any way. Please know that there are people who care enough to help. Please know that your feelings are valid.

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How do you describe EDS?

Recently I asked my Instagram followers to give me a one to three word description of EDS. I took the answers that I got and put them into a word cloud. I am very happy to present the descriptions of EDS provided by those who know it best. Screen Shot 2017-09-12 at 12.04.33 PM.png

Leave me a comment: Comment and let me know your one to three word description and if you liked this post comment and like to let me know and I will do more like this!

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Explanations by those who know it best.

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.