Your words, my medicine: What the online community means to me.

It’s impossible to adequately explain to people what the online community has been for me. My face to face network of support got so small when I actually needed it, leaving me feeling so much more alone then I ever had to begin with. And not to say that I didn’t play my part in that; as the pain worsened so did the depression that followed and I began to isolate myself from a world that I felt no longer understood me and that I could no longer properly be a part of. I pulled away. Now I don’t even think that I know how to act like a teenager; to let loose and just have fun with my peers. I can’t pretend that I’m carefree – not when there’s medications to be taken, bone shattering pain all over my body and the lingering question of if I needed to go to the hospital how would I get there safely? – clearly I’m not carefree, there’s just too much on my plate for that. Pain can take all of the fun out of things and it does.

Online I’ve found understanding and support. I’ve been able to talk to other people my age with my disorder that I’d never have access to otherwise. I’ve been able to learn from and lean on people from every corner of the world who also spend their days in pain or who care for someone who does. I’ve been on the receiving end of such genuine care and kindness and in turn have become so invested in the lives of those that I converse with. When they hurt, I hurt for them and vice verse, and it’s not a bad thing. It’s because I can relate on such a deep level to them and everything that they tell me that it’s impossible not to become involved where their lives are concerned. Not to mention what the kindness of those same people has meant to me. It lifts me up even when I don’t think that such a thing is possible. 

Sometimes the deep connection that I share with these incredible people can have painful repercussions – for instance when someone loses their battle with their illness. I mourn for them as I would for any other friend because it cuts just as deeply. When it is my specific disorder that takes a life it’s a painful, sobering blow that hits extremely close to home. It’s during these times that I’m reminded of the reality that is Marfan Syndrome but also that I am lucky to still be here. I do my best to honor and remember them: I mark their name on the mural/sketchbook that is my wall and am sure to be ever reminded and thankful that I’m still here. Sometimes deep depression and extreme pain cloud that thankfulness but for the most part it serves it’s purpose. 

My online community or “family” are a constant reminder of the sheer strength and power of words. I very often start my day by checking the comments on my blog because the kindness does so much for lifting my spirits and readying me to fight it out another day. I’m so grateful for all of you and to have that support system. 

10 thoughts on “Your words, my medicine: What the online community means to me.

  1. Katie, you are an excellent writer! As a victim of Ehlers-Danlos, I relate. I probably wouldn’t bother with Facebook, except I love the EDS and Marfan communities. Don’t tell the EDSers, but I kinda like the Marfans better. You guys are almost the same as us, but just a little bit different.

    The whole on-line community has made me feel like part of a cool club, and very understood for the first time in my life. I love my on-line friends as if I saw them in person every day.

    You are so young. You have many wonderful years and experiences ahead of you, even as a Marfan. I’m a lot older than you are, and at this point, I’m not sure I would trade in my Ehlers for normal. I never thought I’d say that. I’ve had a very difficult life due to my collagen weakness. But it’s been a special, even enchanted life.

    Normal people are totally overrated.

    Keep writing and I’ll keep reading. Your blog is one of my favorites.

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  2. I agree. I’ve found support online for my fibromyalgia. My friends and family try to understand but they’ve never experienced chronic pain. Online, I’ve found people who are going through this too. It’s mad me feel less isolated.

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    • I can relate to this 100%. I find that it’s extremely hard – impossible even – for others to be able to truly grasp the concept of being in pain 24/7 unless they experience it, for me the effort that they’re willing to put in has always been the most important factor. The online community has allowed me to feel much less isolated too, thank goodness for it because I’d feel so alone without it.

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  3. Your strength gives me hope in my battle with YOPD. It’s also great to know I’m not alone as my world changes often faster than I can adjust to. Your amazing!!

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  4. Dear Katie, I am so happy that you realize there are many here online full of support and most of all understand of the range of emotions that you are experiencing. I would love to reblog your post with your permission as you have been able to put into words what many who are ill would like to express. Today I will think of you often and send you virtual hugs filled with love and strength. Take care.

    Health & Happiness.
    Narelle :-)

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  5. Brave Katie you are such an example of courage and compassion and you mean a lot to us, your online fans and supporters. You have articulated emotions that I can only guess at – I understand my own child’s pain better because of your blog. Thank you!!

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