“Pain is soul destroying. No patient should have to endure intense pain unnecessarily." #chronicpain #spoonie

“It means the pride you feel from having a productive day can be suddenly swept away by waves of pain because actually, you did too much… It frequently means experiencing feelings of depression or grief over the way of life that you’ve lost.” #ChronicPain.

“During flareups #symptoms become unbearable… the only thing I can do is lay in a dark room… The very best of days can turn into the worst at the drop of a hat. This is a big reason why people w/ #Fibromyalgia are reluctant to make plans.” @creativefibro.

“Holding conversations can be particularly challenging and exhausting… When my #MECFS is at its worst I struggle to speak at all. My husband and I have developed code words for simple tasks… It’s like our own private language.” #chronicillness #pwME.

“I’ve lived with this #diagnosis for eight years now. I know how it affects me and I’m not afraid to say, ‘This is what I want’… You have to be your own advocate… I won’t ever be #pain free, but I want to be able to get out of bed.” #RA #chronicillness.

“Be good to yourself and put #selfcare first on your priority list. Do only what your body tells you to do and find healthy ways to soothe yourself. [Gentle] yoga, tai chi, meditating may be helpful. Rest!” When No One Seems to Understand #ChronicIllness

“When someone tells you that your illness isn’t so bad, or recommends a “surefire” cure, challenge their assumption… “I wish I could be cured as easily as you imagine. Unfortunately, it doesn’t work like that for most of us.”” #ChronicIllness #ChronicPain.

“I miss feeling productive. I miss feeling spontaneous… I miss not being #exhausted constantly. I miss feeling like I had a future… I’m trying hard to find my identity again. I have lost so much…after I worked so hard to become who I was.” #ChronicPain.

“Rest before you think you need to. I’m still working on this! I’ll tell myself: ‘I can do just one more thing’ but that one more thing is often one too many… When I finally lie down, I’m too [pain-] wired to benefit.” #pacing #chronicpain #chronicillness.

“‘Why is she parked in a #disability spot? She looks fine… She’s too young.’ Most of the public is uneducated on how #pain and disease affect young people too. We're not faking an illness to get a close parking spot. We would much rather be able to walk.”

“People have an idea of what they think pain is supposed to look like and if you don’t fit that… you are accused of being a faker… It’s hard to live with #chronicpain—it affects every aspect of your life—but it wouldn’t be as hard if #cpp were believed.”

“#ChronicPain, whether from illness, #disability or surgery, can distance us from others and, seemingly, from life itself… There is always this aura of pain that separates us… the quality of life is so different… Other people exist on another plane.”

“Often with #chronicillness we’re forced to do nothing as our health limits us—particularly in a flare. What if we gave ourselves permission to do nothing? Sometimes #selfcare with illness is letting go of the guilt we feel when we’re unable to do things.”

“It’s often hard to describe to people what it’s like to spend your life in #ChronicPain… Every time I have a moment where I am just absolutely desperate because I’m in so much pain—I remind myself that I have been there before. And I’ve made it through.”

“Your career begins to falter and you struggle to hold onto it… You may feel like you are failing loved ones… These thoughts come with #ChronicPain. But you see emotions, they twist thoughts. Especially when we’re tired, #fatigued…sad and in high pain.”

“People dealing with #chronicillness display courage in the face of fear and the uncertainty that is a constant part of their life. They retain #compassion—and smile through the #pain—to help put everyone at ease, even when they are imploding inside.”

“Never assume a #ChronicPain patient is not experiencing pain when they say that they’re fine… Recall a time you were in pain, multiply the intensity and try to imagine that pain’s 24/7—without any relief in sight.” @apainprincess #invisibleillness #cpp.

“I intentionally avoid taking a full shower on days when I have other commitments. Even with a chair, a shower requires considerable recovery time, so I do my best not to overlap—with appointments or other energy-draining activities.” #chronicillness.

“It is okay to rest. We need to take breaks… And understand there should be no guilt in this. We have #fatigue and it is part of managing our day… We have to pace. We don't pace and we suffer for it—sometimes for days/weeks.” #chronicillness #chronicpain.

“With a really good book I was able to pull myself away from the pain and into incredible worlds of fantasy… It’s the same with movies or TV… When I was asked what the secret was to surviving #pain that never quits: distraction.” #ChronicPain.

“There are just too many variables when it comes to our chronic illnesses… and they just won’t get it unless they get it… Everyone is fighting their own battles but—more likely than not—the person asking doesn’t have a debilitating #chronicillness.”