"Suffering the Slings and Arrows of Outrageous Fortune"

11 years old, and EDS had struck. I lost my life. Now the meaning of  “Hey mom, I’m going to the park with the neighbor kids” doesn’t mean anything. The things that gave me a rush before are pointless. Now going to physical therapy is as normal as going on a picnic. Going to the doctor’s office is as normal as going to the mall. Taking meds is as normal as asking mom for a piece of gum. Putting braces on is as normal as changing clothes 4 times a day for a little girl. Putting a dislocation in is as normal as putting on a bandaid. Putting a hard collar on is as normal as putting your hair up in pigtails. Sitting in a wheelchair is as normal as riding a bike.

And yet I get up everyday. I deal with the same issues everyday. I put a smile on my face. I stay strong. I deal with the pain. Every 5 minutes I have to stop what I’m doing to put a joint back in place. No matter what I do I am still in pain. I can’t walk for long, but I can’t sit in a wheelchair for long. I take medicine 4 times a day. Every single day. Whenever I do something to relieve a problem, I get 15 more. Whenever I put a joint back in place, my skin splits. Giving me 1 more problem to deal with.

You can see that EDS is a real thing. 1 in 5,000 people have it. And yet doctors say we’re faking it. That we have gone mental. That we don’t have pain. We want attention. That we are blatantly lying to their faces. Well, Doc, where’s the proof? We have presented our physical proof to your, where’s yours? We get treated like crap by doctors, and yet we have no choice but to go back to them. They tether us to them using medicine that we have to get renewed every 3 months.

When the outrageous is normal.

When time feels like an eternity when you have chronic pain.

And yet EDS has made me a better person.


Comments on: "“Strong is what happens when your weak runs out” – A guest post by Emily" (6)

  1. You are amazing. Full stop. I’m twenty and I don’t think I could survive what you go through. Strong isn’t right under the weak for everyone…I, for example, hid mine beneath fear and anger. It comes out once in a while when I’m explaining EDS to someone and my pride demands it, but otherwise, it stays hidden.

    It sounds really corny, but you’re kinda one of my heroes. You’ve dealt with so much. I’m only on two medicines and I can get around fairly well, and I still lie down for a good cry sometimes. You are so strong, and it’s not because there aren’t any alternatives, because there are. It’s because that’s who you are.

    *gentle hugs* Please give Mr Padme a petting when he allows you…he’s so very adorable (though I’m sure he’d hate to hear that) and he looks so soft. My sweet tabby baby, Tiger Lily, is at home while I try to figure out college, so this is vicarious cat petting.
    And if he’s anything like Lily, he doesn’t mind the attention as much as he pretends to.

    • I am going to try to get Em to reply to you herself. She really doesn’t get why people say such nice things to her or that she really is an inspiration to a lot of people. So, thanks for sharing your own experience – that is the great thing about social media – we can all help each other along on this tough journey! Oh, and I bet the strong is right underneath for you – don’t sell yourself short! 🙂

  2. Michelle said:

    That was beautiful- and sad- and made me proud of you- and mad for you. You’re doing a great job. (and so is your mother)
    God bless you,
    Michelle and Megan
    (EDS, pots, gastroparesis, gastric pacer, multiple autonomic issues)

    • Thanks for the kind words – I had Emily read your comment, maybe she will comment back herself!

      How are you and Megan doing? I have been thinking about you recently and hoping all is well with you. I think last time you commented, Megan was having surgery. Did it go well? I haven’t seen her on Inspire lately and hope she is doing well!

  3. Rachael said:

    Wonderful Em 🙂 It is so great. I am 15 and EDS stuck me at 7. I understand everything you said

    • Thanks for commenting Rachael! I am really sorry you can identify with what Em wrote – EDS sucks – but it is nice when you know someone else gets how you feel! I am going to encourage Em to reply to these comments so she can really speak for herself!

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