The Reality of Accepting Ehlers-Danlos Syndrome

Throughout my life, I have had my share of trauma and heartache. It hasn't really been easy.  I have survived so much and am definitely a fighter... but Ehlers-Danlos Syndrome has brought up some obstacles that I never realized I'd face.  Ehlers-Danlos Syndrome has stolen so much from me.

I think one of the things that always presents as a challenge to me is accepting who I am... But not just me, my illness too.  I was raised to be independant, strong, loving and was taught how to have a great work ethic.   I have worked so hard to keep those qualities as a huge part of me over the years. 

One thing I think most people don't understand is that accepting my illness and accepting all it brings as part of me isn't the same as giving up.  Most people also don't know how hard it has been accepting my illness and the reality it brings to my life.  Accepting Ehlers-Danlos Syndrome has really sucked.  I still pray with all my heart that someone can find a better treatment or even a cure.  I think I would cry for days if they found a cure. 

Accepting Ehlers-Danlos Syndrome is accepting life-long pain. 
Accepting Ehlers-Danlos Syndrome is accepting increasing dislocations in more places and more often.
Accepting Ehlers-Danlos Syndrome is accepting the possibly of having to go on disability when I'm young.
Accepting Ehlers-Danlos Syndrome is accepting that it will be harder to find a job that my body can handle.
Accepting Ehlers-Danlos Syndrome is accepting the need for multiple medications to help me function.
Accepting Ehlers-Danlos Syndrome is accepting that some employers may discriminate against me (regardless of any law).
Accepting Ehlers-Danlos Syndrome is accepting all the comorbidities that come with it.
Accepting Ehlers-Danlos Syndrome is accepting that I will have to teach every doctor that treats me.
Accepting Ehlers-Danlos Syndrome is accepting when doctors or staff think I'm making up my pain.
Accepting Ehlers-Danlos Syndrome is accepting that I will always need excellent health care.
Accepting Ehlers-Danlos Syndrome is accepting that my body controls everything in my life, regardless of if I say otherwise.
Accepting Ehlers-Danlos Syndrome is accepting that I will forever wear a mask to hide how I really am feeling.
Accepting Ehlers-Danlos Syndrome is accepting that what I go through grosses out or bothers others and so I can't really talk about it.
Accepting Ehlers-Danlos Syndrome is accepting the stares and judgement from others that think I don't look sick, and therefore I'm lying about my health.

It has been really hard lately.  I know people who love me hate seeing me in pain.  I know people who love me have good intentions.
This is what I really need everyone to understand:
ACCEPTING EDS IS NOT THE SAME AS GIVING UP!

Accepting EDS means I can try to live a full and blessed life for as long as I can.