Monday, March 1, 2010


I live my daily life with my joints dislocating quite often.  I have to adjust how I do things in order to help minimize the amount of dislocations I suffer.  I go snap, crackle and pop quite often!  My joint noises shock people quite a bit but to me they are just part of life.  Does it hurt when it happens?  YES!!  But I don't have a choice other than to just try to put it back and keep going.

One of the most difficult things about having Ehlers Danlos Syndrome (EDS) isn't the dislocations.  The most difficult part is the constant incredible pain and constant fatigue.  The second most difficult thing is the lack of understanding other people have towards me and my EDS.  People look at me and say that there isn't anything wrong with me because they can't see it.  Well, yes for the most part EDS is an invisible disease.  But just because you can't see it doesn't mean that it isn't there.

I wish that people weren't so cruel and lacking in understanding and compassion.


  1. I had no idea! I'm so sorry for the pain you're in.. and the lack of compassion from others. I'm sure it's startling and concerning for others, but, geesh, people, show some respect!

  2. Ignore 'em.
    I know that's hard sometimes. And it took me a long time to do it myself.
    Getting older does wonders for things like that.

    It's your life and your feelings. You don't need to care about what those selfish idiots think.

  3. Oh gees, that sounds awful, Stephanie!! People are insensitive--that never changes. Sigh.

  4. Thanks for the support ladies!
    You all are right that I need to just ignore the hurtful people, but sometimes that is just so hard to do!

  5. I know it is tough, but you can't let unsupportive people affect you. So many people will refuse to support you and you just need to ignore them. Stick with the people who are supportive and build you up, not those who tear you down.

  6. I am so sorry. I completely understand about people not understanding b/c they don't see it. It is a silent illness. I suffer from gastroparesis. Half the time I am either sick to my stomach like the flu or in pain. But because I have my makeup on and i look fine, then I must FEEL fine, right? Not.

  7. Just try to stay positive. I am so subversive that here is what I would do:

    I would make about a 1/2 page sheet of information on EDS (so you could print it out as two per regular sized piece of paper and then cut in half) and carry about 12 or so in your purse at all times. When you encounter someone who is insensitive or downright mean, just hand them the paper and kindly and sweetly inform them that you do have this ailment and you want to help them understand.

    And then, ignore all negativity and feel good that you are helping to spread educational awareness.