5 Reasons I'm Speaking Out About My Ehlers-Danlos Syndrome This Month


Kathleen sitting in a chair smiling, showing off her beaded necklaces
Kathleen.

When people look at me, when my feeding tube is covered and PICC line neatly tucked away, when I’m not carrying around a backpack containing a pump and my tube feed formula that keeps me alive everyday, when I’m not relying on my cane or a wheelchair to get around, I look like a “normal,” healthy 19-year-old girl.

People can only tangibly see one side of me. They see I’m a photographer, an artist, a writer. They see I’m a daughter, a sister, a friend. They see I’m an aspiring doctor, a student, a bookworm. They see I’m determined, I love fiercely and that I’m always happy. They see that all it takes to make me smile is seeing the beautiful golden sunlight shining through my window at 7:08 p.m.

What people can’t see are the debilitating symptoms that interrupt my daily life. You can’t see the incredible wave of nausea that just overcame me out of the blue. You can’t see my joints slipping out of place with every step, with every breath. You can’t see the overwhelming fatigue that makes it difficult for me to even get out of bed every day, despite getting more than enough sleep. You can’t see my heart racing and vision blurring just from standing up. You can’t see Ehlers-Danlos syndrome (EDS).

The month of May is Ehlers-Danlos Syndrome Awareness Month. Although, for us zebras, we can’t help but to be aware of it every hour of every day.

This is why I raise awareness.

1. For friends and family, I raise awareness because it’s hard to be compassionate about a battle you don’t understand. I would never expect anyone to completely understand the fight I fight every day unless they’ve been through it themselves. But, through sharing my story, I can help give you glimpse of what it is like to live in a body that is falling apart at the seams. I’m not looking for pity, I don’t want you to feel bad for me, all I ask is that my family and friends do their best at trying to understand.

2. For medical professionals, I raise awareness because EDS is too often brushed off (due to a lack of knowledge) as just being able to do party tricks and not recognized as the multi-systemic illness that it is. Even worse, I am often faced with doctors who haven’t even heard of it. It’s not only disheartening to not be understood by the people who hold my life in their hands, but it can also be very easy for patients to be mistreated when their health care providers don’t understand the complexity of their disease. To any medical professional reading this, never be afraid to ask a patient about their illness. Chances are, we will be able to shed some light on our situation and you may even learn something new.

3. For fellow patients, I raise awareness because being in limbo having an undiagnosed illness is, I think, one of the most difficult experiences you can face. When you have debilitating symptoms that nobody can put a name to, it’s scary. People don’t seem to take you seriously until you have a firm diagnosis. The process is a huge test of your strength and courage. Had it not been for others dealing with this illness that have spoken up on social media and shared their story for the world, I may not have my diagnosis today. We may never have figured out what is going on with my body. I will forever be grateful to other zebras for sharing their experiences and being a huge comfort to me during that difficult time. If I can help just one person achieve the peace of having a name for the madness their body is going through, then I say it’s a job well done.

4. For everyone else, I raise awareness because everyone is fighting a battle you can’t see. That battle could be mental illness, physical illness, or something else. Mine just happens to be EDS and friends, so those are the experiences I bring to the table. I want to share the importance of understanding and compassion. I want to share the importance of patience and love. I want everyone to know, no matter what they’re fighting, as isolating as it can feel, you are never alone. Most importantly, I want to share how important it is to see beyond what’s on the outside. You can’t judge a book by it’s cover because you could miss out on a story so incredible your life will never be the same.

5. For myself, I raise awareness because people like to say, “Don’t let your illness define you.” But, you know what? My illness does define me. It has played an instrumental role in helping me become the strong, outspoken person I am today. Every challenge I’ve been faced with and every mountain I’ve climbed has contributed to my being. It is not, however, the only thing that defines me. I am so much more than just a zebra. But if you want to understand who I truly am, I need to share not only the part of me that you see on the outside: the artist, the sister, the friend. You need to also see the warrior fighting an invisible battle every single day.

This May, take a moment and care to be aware.

Follow this journey on Green Eggs and Spoons.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


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