Ehlers-Danlos Syndrome

Dear Support System | Life With Ehlers-Danlos Syndrome

Living with Ehlers-Danlos Syndrome (and many other related conditions) isn’t easy. Not only for myself, but for everyone that cares about me, too.

I can only imagine how difficult it is to watch your loved one deteriorate before your eyes, knowing that there’s little you can do to make them better.

I want to take the time to say THANK YOU. The words hardly seem to touch the level of gratitude I hold within my heart, but the only way I can think of to show the thankfulness within me is something like, “aslfjaslkdjfa;lskjdfa;lskjdflsjlfkjdlskjdflah!!!” and that’s just not very nice to look at.

So, here goes nothing.

Dear Support System,

Thank you for believing me when no doctors did.

Thank you for driving me to every doctors appointment even though it seemed like no one could help me.

Thank you for advocating for me when I was denied the disabled accommodations at Disneyland on my 20th birthday while I cried outside.

Thank you for spending the money necessary to get me my hearing aids so that I can finally hear clearly, countless doctors visits/tests to find out what was hurting me, custom braces to keep me from dislocating, medications to keep me going, and comfort food on the days that I felt like food was my only source of happiness.

Thank you for not hating me when I have to leave a store as soon as we walk through the doors because pain or nausea became too much too fast.

Thank you for staying up with me when my pain is so bad that all I can do is cry.

Thank you for spending hours waiting in emergency rooms.

Thank you for helping me recover from surgery, no matter how gross it was.

Thank you for joking about my health with me to keep me from feeling so down about it.

Thank you for being understanding when the pain becomes too much and I lash out at you.

Thank you for helping me feel at peace when I realized my body wouldn’t allow me to work in the field I am passionate about.

Thank you for pushing me when I need the push, and for alerting me when I am being too stubborn and need to rest.

Thank you for being okay with staying inside most days, since I am either too exhausted or in too much pain to do “normal” 25 year old things.

Thank you for listening when I need to lament about the life I will never have, and for reminding me of all the things I can still accomplish.

Thank you for loving me through every inconvenience, every change of plans, every cancellation, every frustration filled outburst, every dark day, and every (rare) great day.

With all of my heart, and every defective strand of DNA within my body, thank you. 

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