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

“But you were fine yesterday so why are you canceling today? Surely your medication will treat it… You’re too young to be that ill… You’re smiling so you can’t be in pain.” Why Being Questioned About Our Invisible #Disabilities Is So Harmful #ChronicPain.

“It’s not surprising that living with a long-term health condition…repeated bad days, or daily #pain and #fatigue, can keep us focused on illness… When we choose to do a little too much for the joy of it, it’s hard not to anticipate a crash or a flare.”

“It’s so difficult to explain to people how incredibly challenging life can be when you have a number of illnesses that cause pain… Doctors need to be more compassionate, responsive, listen… It’s hard enough to deal with #pain and #chronicillness.” #cpp.

“Life with one #disease is so hard. Living with many diseases is unbearable… #Autoimmune disease doesn’t just set one body function on fire. It sets the whole house on fire… Every day I open my eyes and my first thought is, ‘PAIN’.” @globetrotteri #AxSpa.

“There‘s not one moment I‘m not in pain. The medication simply allows pain to be at a level where I don’t absolutely lose my mind… Sometimes my pain‘s so intense that [#opioids] don’t even touch it. Anyone with severe #ChronicPain will tell you the same.”

“With #CRPS our nervous systems are in overdrive—malfunctioning 24/7. The pain is so intense & new symptoms are popping up… None of it makes sense. The #stress & #anxiety revs up our nervous systems even more which causes even more #pain—a vicious cycle.”

“Ask them to note in your chart that they are refusing to do X against patient request (a great tip from amazing #chronicillness patient and lawyer Matt Cortland), if a doctor won’t do something—won’t order a test, prescribe you a medication.” #ChronicPain.

“In all my years as a doctor treating patients with #chronicillness, I never saw a patient who enjoyed feeling ill. I saw the opposite, patients who were once very active, desperately trying to find answers and treatment for their overwhelming symptoms.”

“It is not about numbing or ignoring your emotions, but rather observing them without judgement… Seeing them as clouds passing on a sunny day, instead of letting them crowd your mind and take your attention.” @bloomingmindxx #MentalHealthMatters #Spoonie.

“Rare patients don’t expect you to know everything, but they do expect you to #bekind and helpful… Listen to the patient! We know our condition better than most doctors… You don’t have to hide that you’ve never dealt with it.” #RareDisease #Zebra.

“I wonder though if people who don't live with #chronicillness truly realise how much it impacts upon daily life? Do they realise that symptoms can be there 24/7… or that medication doesn't magically alleviate all our symptoms?” @throughfibrofog #spoonie.

“When you see me out with my friends, what you don’t see is that it will take me three days to recover… When you see me looking energetic and getting things done, what you don’t see is that this is the first good day I’ve had in weeks.” #InvisibleIllness.

“When you have #Fibromyalgia, it’s a monthly, weekly—sometimes daily—thing, getting knocked down… Boom. A flare hits… immediately back to basic survival again… I’m suddenly just pushing through…struggling to do the day-to-day minimum.” @SoIsFibroReal.

“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.