Princess in the Tower

RobinReach

“Most people start the day with possibilities, and energy to do whatever they desire, especially young people… Every little thing I do as a person with #chronicillness(es) and #chronicpain requires energy (especially because #fatigue is a symptom).” https://buff.ly/3VeuDEP

“I experience fear every time I make any kind of plans—how will I feel when the day comes around? Will I have to cancel? Will my friends be upset? Will my body let me down? … It’s one of the parts of #ChronicIllness that most people would never think of.” https://buff.ly/m4I89dF #ChronicPain

RobinReach

“Not being in pain seems so far removed from my reality… Trying to remember the feeling of not being in pain or besieged by other debilitating symptoms is like trying to recall the feel of the warm sun on your skin during the cold, dark months of winter.” https://buff.ly/4etYwaw

22 Things People With Chronic Illness Don't Admit to Their Healthy Friends 22 Things People With Chronic Illness Don't Admit to Their Healthy Friends

“While they know my illnesses are bad, I don’t often show just how bad they can get… When I’m able to hang out, that’s me on my absolutely best days.” https://themighty.com/topic/chronic-illness/what-sick-people-dont-tell-friends/ #RareDiseaseDay #RareDiseaseDay2026 #ChronicIllness #ChronicPain

“It’s very isolating. It’s hard to get out to socialize when you hurt so badly you can barely stand it…I try to mask the pain… If I walked around showing how I felt—people would be truly concerned. The pain is unbearable most days.” https://buff.ly/K1bR2aW #CRPS #RareDiseaseDay

RobinReach

Today, I am joining the #ShowYourStripes campaign in honour of #RareDiseaseDay and the millions of people all over the planet living with a #RareDisease. Visit rarediseaseday.us To learn more and get involved @RareDiseases (@nord_rare) 🤍🖤🤍🖤 #Zebras

“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.” https://buff.ly/3tMRRH2

“Chronic conditions are just that. Chronic. They’re not short term temporary issues and there’s no getting better soon, maybe not even ever. All we can do is manage the symptoms and deal as best we can.” https://buff.ly/7M19Zqi @InvisiblyMeBlog #ChronicIllness #ChronicPain

“I explained why I don’t show up…why I cancel last minute, why I feel so lost… If they’re your friends—they may not understand the #disease but they’ll do their best to understand your feelings.” https://themighty.com/topic/complex-regional-pain-syndrome/chronic-pain-shutting-out-friends #CRPS #CPP

The Silent Battle: Living in the Shadow of Chronic Pain The Silent Battle: Living in the Shadow of Chronic Pain

“The unpredictability: You might carefully venture out, attempt something normal, only to be ambushed by #pain's sudden intensification. Each time this happens, the disappointment cuts deep, and the narrow path of what's possible seems to shrink further.” https://buff.ly/ANglZ0Q @remotetherapy.space

“I feel isolated all the time so when someone reaches out to me just to catch up, check in, or say hi, it can quite literally make my day. Text me, message me… anything to remind me that you’re thinking of me and I’m not forgotten.” https://cme.sh/autumn-floweriNg #chronicillness #disability

“Listen. Create a safe environment for them to be heard without dismissive statements like “be positive”… It’s OK to admit that you don’t know what to say. When in doubt: “I don’t know what to say… but I’m sorry you’re struggling,” will work just fine.” https://buff.ly/41vUBXz

“I want to normalize a person feeling scared or nervous about the future while in the waiting…because for most, answers don’t come immediately… I hope we can give ourselves kindness and grace…but also find people and safe communities that do and will.” https://buff.ly/s61fJA7 #hEDS #EDS #ChronicPain

“I spent days and weeks bedridden due to crushing #chronicpain flare-ups… People who don’t have #fibromyalgia or another #chronicillness often don’t get that chronic pain is an ongoing struggle. If my body tells me not to do something, I better listen.” https://buff.ly/3ypPbBr

“A huge part of #chronicillness is #isolation. This is magnified because of the pain and fatigue, because of the search for things that might help, and heartache when they don’t, because of the unpredictable flares that disrupt what slender life remains.” https://cme.sh/chronic-caRe

“Denial gets me every time. In my head I’m still healthy and active, until I try to be healthy and active. It doesn’t matter how long I go through this same circular pattern—it’s always I think I can, I think I can, then fail.” https://buff.ly/d4grqhR #chronicpain #chronicillness #disabilitysky

RobinReach

“Healthy people don’t understand that #chronicillness and pain is not linear…the consequences don’t match the actions. We have no idea if what we choose to do now will mean that we can’t move tomorrow.” https://invisibleillnessbattle.wordpress.com/2015/04/18/no-one-talks-about-the-fear/ #chronicpain

“It’s a day-to-day battle… a lot of the time it feels more like just surviving… Pain makes the most simplest tasks, like getting out of bed or getting dressed, difficult feats. You’re battling everything. All of the time.” https://buff.ly/4blEHS3 #ChronicIllness #ChronicPain

“I just love how #reading is gentle, restorative and a way to travel…when your body needs to stay still… Flares are never easy, and can be very frustrating, but finding cosy moments in a #fatigue flare makes all the difference.” https://buff.ly/2crqTdU @bloomingmindxx.bsky.social

“Remember #YouAreNotAlone there's a whole community here you can come to… Keep doing whatever helps… We have to take care of ourselves or wind up even worse. Don’t feel guilty for doing what you need to.” https://themighty.com/topic/chronic-pain/advice-support-chronic-pain-want-to-give-up/

RobinReach

“Since becoming #chronicallyill, books have become even more crucial. Books have become a magical portal allowing me to escape the severe, debilitating symptoms that are now my constant reality.” https://buff.ly/QBFl4Gf @serenebutterfly #chronicpain #booklovers

“I’m astonished by the fact I look at my feet and there are no flames… Not only does light touch hurt but so do other things… vibrations from music hurt me… Mix that with the amplified effect—it’s very hard.” https://themighty.com/topic/reflex-sympathetic-dystrophy-syndrome/crps-flare-ups/ #CRPS

RobinReach

“It takes a lot of energy to be in pain all the time… You can’t know what it’s like living with #ChronicPain unless you have it, and understanding what it’s like… dramatically affects how you treat someone who lives with it.” https://buff.ly/ZVh1ubc
@kmitchellauthor.bsky #ChronicIllness

“The other unfortunate side effect of being #paingry is that is leads to #painsomnia… Many of us have nights like this and don’t say a word… It is 3 a.m, I’m awake and I’m in pain…the absurd thing is I am exhausted. I want to sleep.” https://cme.sh/7RmPj0 #ChronicPain

“The real hardships come from the repercussions of being in #pain all the time—the exhaustion, mental blur, inability to connect… because of the constant blinding discomfort… Even the simplest things become so complicated.” https://www.theodysseyonline.com/why-does-nobody-understand-that-im-ill/

“A drop in temperature causes my pain level to soar through the roof… If I go outside in the cold for even a few minutes it causes my pain to creep up and stay that way.” 19 Ways #ChronicIllness Affects Daily Life https://cme.sh/life-living #ChronicPain #ChronicSky

“No one has the right to question my use of a cane… He doesn’t see that I can’t walk up stairs and have to crawl. He doesn’t see the days I can hardly walk, because those days I’m not on his bus at all. Very few people see the times I struggle.” https://cme.sh/1qq8Ku #Disability #InvisibleIllness

“There’s no shame in using whatever tools help you function… Medication is not failure. You’re not broken because you need support—you’re #resilient because you keep showing up… Give yourself the grace to rest.” https://vikkyleaney.substack.com/p/my-top-5-pain-management-tools-as #PainAwarenessMonth

“Remember that moods are impermanent. Sometimes if I’m feeling down, it’s hard to remember this… hold a painful mood lightly, know it will pass. Doing this clears the way for self-compassion.” https://www.psychologytoday.com/gb/blog/turning-straw-into-gold/202206/21-tips-from-21-years-sick #spoonie

“There are no magic words, and unless you are living with #ChronicPain, it’s difficult to understand what we are going through. ”This must be so difficult for you.” Comments like this show support without pretending you know how we feel.” https://buff.ly/2MZaEoa #chronicillness