Princess in the Tower

RobinReach

"The overwhelming exigence of this illness its symptoms and its effects consume every part of who I am. It impacts every facet of my life… So it can be hard not to talk about it.” https://www.brainlesionandme.com/why-i-dont-always-talk-about-my-chronic-life/ @serenebutterfly.bsky #chronicillness

“Listening to your body is one of the most important things you can do when you live with #chronicillness… signs of increased #fatigue, dizziness and #pain… Ignoring my body can cause a flare-up of symptoms, so I try and listen to what it’s telling me.” https://buff.ly/9eyP6RE #spoonie

“#ChronicPain is not something you get used to… you get used to the fact that you’re always in pain but it doesn’t dull any of it… It takes a massive toll on your body and isn’t something that gets easier the longer you have it, it gets more exhausting.” https://buff.ly/3zbkAYW

“People who see us ‘able’ to carry out activities are oblivious to the pain involved, aftermath or inability to repeat that activity. The swift flare from ‘normal’ pain to being entirely unable to speak can also be perplexing.” https://cme.sh/self-care #ChronicPain #ChronicIllness

“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/4dIwA33 #ChronicPain #Disabilities

RobinReach

“But the saddest part about it is that no one even knows they existed, although they mean so much to you. In their heads it’s just “she’s not into such activities”, yet if you could, you would be a star.” https://buff.ly/3WNQ9AV @achronicvoice.com

“Chronic pain is awful to live with—it’s there all the time and really interferes with life. You get used to living with it to a certain degree, but when it steps up a gear, it can catch you off guard… If I don’t pace… I’m in trouble.” https://buff.ly/3SqiB9F @despitepain.bsky.social #ChronicPain

“#ChronicPain patients just want to continue to function… And sometimes that requires medication… Everybody feels pain differently and what works for some may not work for all. #PainPatients just want quality of life!” https://buff.ly/3AzOPJu #Chronicpain

“It’s so easy to feel alone…I know I am not…there are millions…fighting the same fight. Fighting to be heard, fighting to be understood, fighting to be believed… Lately, I have felt drawn to lighthouses… Beacons of light in the darkness.” https://cme.sh/7EFjk5/ #ChronicIllness #ChronicPain #Spoonies

“If you know someone with #chronicillness, I urge you to reassure them when they cancel plans—that you know it is not their fault… Guilt is our constant companion. We are trying our best, and we only want you to see and appreciate that.” https://cme.sh/self-worth #ChronicPain #DisabilitySky

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/