Notes from Fighters

Hey all my lovely followers!
There are many people like me who struggle every day with Ehlers-Danlos Syndrome and other illnesses like Fibromyalgia and Chiari Malformation (It causes too much pressure on the brain).  I asked everyone a question on one of my support group pages on Facebook.  I wanted to know if they could tell the world anything about their life with an invisible illness, what would it be.  I got a ton of answers in a very short period of time.  I wanted to share some of them with you because most of them are how I feel too.  I have permission to share this information with you. :)


"I'm not making it up.  I have more pain than you realize.  I might look like I'm doing great, but really, my pain can be at an 8. I just hide it and keep fighting." -Me, Carley C.

"Just because I'm up and walking around functioning doesn't mean I don't feel like shit or that I'm healthy and can do anything you want me to." -Chey S.

"That I'm not lazy." -Wendy B.

"When I say that I'm fine, I'm really not" -Holly B.

"To take a moment to empathize and try to feel it - to try to imagine what it would be like to feel like you were 'hit by a truck' many days yet nobody can see that you feel that way, and that somehow you must carry on anyway. And that as a result of the pain, physical degradation, and activities I've had to give up, I feel like I live in the world in a reduced way & that I am a mere shadow of my former self. Perhaps ask how it would feel to hurt or sprain just one joint, or to hit your finger with a hammer, strain your neck; how would that feel, how would that impact their life? Now multiply that by every part of your body and sit with that feeling."- Cydney B.

"Just because I take care of my twin boys who are 3 at the age of 18 and am able to function doesn't mean I'm not hurting like crazy. I'm not okay as people think I am." -Courtney J.

"That young and healthy are not mutually exclusive." -Cindy T.

 "That I feel bad and guilty that I cannot live a "normal" life and do "normal" things anymore." -Shannon C.

"I haven't had a single day without a headache for decades; everything I say and do is done fighting through pain. If I seem oversensitive or misinterpret or misunderstand, or say something that is clumsy, hurtful or callous, it is not ever my intention. It's just that pain is competing for my attention; it's like trying to hold a conversation with someone screaming in my ears. Sometimes it is all I can do to understand and respond to what is said literally so I frequently miss subtleties." -Renata B.

"That EVERYDAY is different. Just because one day I can do something doesn't mean the next day I can even though I will "look the same" -Allyson O.

 "I wish I FELT as good, as you think I LOOK."     "Often just getting out of bed and dressing is a monumental task, so judging how much I accomplish ,or do not, daily is unfair". -Finette R.

"I hurt ALL THE TIME. Some days are worse than others. My pain level is never a 0. I'm still up and functioning because I'm tougher than most "normal" people." -Corinne M.

"That I am not a hypochondriac and it offends me when your children call me one as I know what you have been saying behind my back." -Brianne G.

I will share more quotes in a different post so there isn't one super long post. :)
Gentle Hugs!