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On the strangest, and most unexpected recovery, after decades of #medicalgaslighting . . . . . #Americanhealthcare #disability #chronicillness #chroniccommunity #spoonie #disabled #MS #zebracommunity #chroniccommunity #spoonielife #spooniecommunity #MedicalGatekeeping #Medicalmisogyny #poorhistorian #PatientRights #CYAmedicine #PatientAdvocacy #poetry #neuroplasticity #poetrycommunity #poetrylovers #poetrygram #poetrysociety #poetryofinstagram #poetryofig #poetsofinstagram #poetsofig #poetssociety #poet #steroid

Coming up on the last few posts of this series: things you can't relate to when you have chronic illness. What else would you add? Which one resonates with you? #chronicillness #chronicpain #invisibleillness #chronicillnesshumor #autoimmunedisease #painmanagement #chronicallyill #chronicallysick #chronicallyawesome #chronicallyillmom #foodrestrictions #gutissues #glutenfree #dairyfree #sugarfree #fodmapfree #chronicillnesswarrior #chroniccommunity #chronicillnesssucks #silentillness #hiddenillness

My DC ting calls me Babe-raham Limping 🩼 #badbwithbadknees

Your social life, emotional health, physical health, relationships, hobbies, and mental health are all areas impacted by chronic illness. Am I missing any? #chronicillness #chronicpain #invisibleillness #chronicillnesshumor #autoimmunedisease #painmanagement #chronicallyill #chronicallysick #chronicallyawesome #chronicallyillmom #foodrestrictions #gutissues #glutenfree #dairyfree #sugarfree #fodmapfree #chronicillnesswarrior #chroniccommunity #chronicillnesssucks #silentillness #hiddenillness

(Clickable link in bio) Why Does Mommy Hurt?: Helping Children Cope with the Challenges of Having a Caregiver with Chronic Pain, Fibromyalgia, or Autoimmune Disease Paperback – May 9, 2014 by Elizabeth M Christy (Author) 4.5 4.5 out of 5 stars 199 ratings https://www.amazon.com/Why-Does-Mommy-Hurt-Fibromyalgia/dp/1478732962 (Clickable link in bio) [I haven’t read this book but hopefully the reviews at the link are informative] — The children of people with chronic illness and pain suffer quietly. “Why Does Mommy Hurt?” is a joyful, yet honest, portrayal of family life burdened with chronic illness. This is a delightful story told by a young boy learning to understand and cope with his mother’s illness. The story creates natural opportunities for families to talk about both the symptoms of chronic illness, and how they affect family life. Even more importantly, the story puts power into the hands of the children. It also offers a helpful “Tips and Resources” section for parents! A portion of the proceeds benefits the National Fibromyalgia and Chronic Pain Association (NFMCPA). This book is appropriate for a wide-variety of illnesses associated with chronic pain, such as: Lupus, Lyme Disease, ME, CFS, Fibromyalgia, Arthritis, Multiple Sclerosis, Cancer, Depression, Autoimmune Disease, and many others.

Life update! These past couple of weeks/months have been tough. As some of you know, the EP who helped me out pro bono and told me that my pacemaker lead has completely stopped working, has passed away. I never knew him well but I immediately saw what a great man he was. Since then, I've been feeling kind of worried about what will happen to me if my ventricle lead also stops working, and since I don't have a Atrial lead to back me up, I think we all know what will happen, as im 100% pacemaker dependent. My current hospital refuses to sort out the situation and has given me a pacemaker appointment for only NEXT YEAR, which is beyond me!! According to them, I'm "fine" but the EP who saw me pro bono told me that I'm feeling these symptoms because of the pacemaker, and I'm only anxious because of what might happen if my ventricle lead decides to stop working. At this point I'm so frustrated and so tired, I've run out of ideas on who else to contact, and most of the doctors I've contacted are beyond rude. I'm just so tired of not being believed and pushed aside like everything is normal. It is not. My anemia is back & unfortunately I can't take iron supplements, it lowers my INR a LOT and I'm not willing to risk a blood clot. The nurses have tried to adjust my dosage to the supplements but it just stays low. On a lighter note, my INR has been stable for a while now and I'm so proud of that because in the beginning I used to struggle with keeping my INR in range, so that's one good thing that came out of this whole situation. My next heart appt is in July and I am not looking forward to it, but what can I say, we have to attend our appts. 🥲 #chronicillness #invisibledisability #chronicillnessawareness #invisibleillnessawareness #raredisease #fighter #livingwithchronicillness #chroniccondition #chroniccommunity #invisibleillness #chdawareness #openheartsurgery #survivor #mitralstenosis #tetralogyoffallot #openheartsurgery #mitralvalvereplacementoperation #bloodthinners #warfarin #CHD #vsd #pacemaker #completeheartblock #cardiomegaly #cardiomyopathy #leftsidedheartfailure #leftventriculardysfunction #pacemakerwarrior #aorticstenosis #overridingaorta

#ChronicPain #Spoonielife #hiddenillness #invisibleillness #Chroniclllnesses #Spoonies #Spoonie #Chronicallylll #ChroniclllnessMemes #SickPost #SickAllTheTime #ChroniclllnessWarrior #ChronicPainWarrior #ChronicPainAwareness #PainWarrior #ChronicCommunity #Butyoudontlooksick #Invisibledisability #ChroniclllnessMeme #SpoonieMeme #SpoonieSupport #Instachronicillness #chronicillness #chroniclife

#ChronicPain #Spoonielife #hiddenillness #invisibleillness #Chroniclllnesses #Spoonies #Spoonie #Chronicallylll #ChroniclllnessMemes #SickPost #SickAllTheTime #ChroniclllnessWarrior #ChronicPainWarrior #ChronicPainAwareness #PainWarrior #ChronicCommunity #Butyoudontlooksick #Invisibledisability #ChroniclllnessMeme #SpoonieMeme #SpoonieSupport #Instachronicillness #chronicillness #chroniclife

Periodt! ☝🏼 - - - - - #chronicillness #chronicallyill #chronic #chroniclife #chroniccommunity #chronicstrong #chronicallyawesome #chronicallyfabulous #chronicwarrior #invisibleillness #invisableillnesswarrior #spoonie #spoonielife #spooniesupport #spoonies

Chronic illness comes in all shapes and sizes but I've learnt to accept when I need rest! #chronicpainisnotnice #chroniccommunity #peripheralneuropathy #neuropathy #hidrentitissuppurativa #hs #restday #type1diabetes

Just a friendly Tuesday reminder that grieving is a long and hard process, and it's okay to not feel okay yet. #chronicillness #chronicpain #invisibleillness #chronicillnesshumor #autoimmunedisease #painmanagement #chronicallyill #chronicallysick #chronicallyawesome #chronicallyillmom #foodrestrictions #gutissues #glutenfree #dairyfree #sugarfree #fodmapfree #chronicillnesswarrior #chroniccommunity #chronicillnesssucks #silentillness #hiddenillness

It’s okay for feelings that are 100% opposite of one another to co-exist✨ Living life as a chronically ill person often means navigating a complex web of emotions, where happiness and sadness frequently intertwine. Human emotion is incredibly complex and the thoughts in our minds and feelings in our hearts, don’t always line up. AND THATS OKAY. It’s normal. It’s human 🫁🫀 People have mixed feelings all the time, it’s just a reality of living with a chronic illness and having something up-end and throw your life off the rails. Having those thoughts and feelings is completely valid in the situations that chronically ill (and caregivers) find themselves in. This emotional duality is exhausting. It’s a constant balancing act, where you strive to cherish the good days and the love of those around you, while also coping with the reality of your condition. The sadness is not just about the pain or the inconvenience; it’s about the sense of loss and the uncertainty of the future. But, you are not alone friends! Yet, this blend of happiness and sadness also fosters a unique resilience. It teaches you to find strength in vulnerability and to celebrate the victories, no matter how small. It’s a journey of learning to hold space for all your emotions, recognizing that it’s okay to feel conflicting feelings simultaneously. This emotional complexity becomes a testament to your strength and capacity for hope, even in the face of chronic illness 🤍 #Subqremo #sickfightsback #invisibleillnessawareness #spoonielife #noteverydiseaseisvisable #chronicillnessawareness #heartfailure #pulmonaryhypertension #chronicillnesswarrior #imawarethatimrare #rarediseaseawareness #phighter #mentalhealth #chronicillness #invisibleillness #livingwithph #invisibledisability #invisibledisease #raredisease #phwarrior #livingwithchronicillness #patientleader #patientadvocate #butyoudontlooksick #clincialtrial #pulmonaryhypertensionadvocate #notalldisabilitiesarevisible #chroniccommunity

It's just....so hard some days 🫠😭 #chronicillness #chronicpain #invisibleillness #chronicillnesshumor #autoimmunedisease #painmanagement #chronicallyill #chronicallysick #chronicallyawesome #chronicallyillmom #foodrestrictions #gutissues #glutenfree #dairyfree #sugarfree #fodmapfree #chronicillnesswarrior #chroniccommunity #chronicillnesssucks #silentillness #hiddenillness #chronicillnessmemes #chronicillnesshumor

https://www.tumblr.com/bulldagger-bait/741047646174707712/you-ever-have-a-good-few-months-with-your-chronic Please post if you know this account has an Instagram account and you know their username

Let celebrate all the life-changing work of the medical professionals who work in clinical trails #internationalclinicaltrialday #clinicaltrials #clinicalresearch #clinical #clinicalresearch #sicence #sicenceandtechnology #medicine #medical #lifewithchronicillness #chroniccondition #chroniccommunity #illnesses #illnessprevention #illnessrecovery #disability #disabledaccess #disabilitysupport #disabilityawareness #hiddendiability #nhs #nhsstaff #nhsheroes

On the passage of time, its relative weight, and meaning. . . . . . #poetry #poetsofig #poetrycommunity #poetssociety #PoetryLovers #poem #PoetsofInstagram #FeministPoetry #Poemoftheday #soulstories #writeitout #wordsmith #poetscommunity #poetrysociety #motherhood #thepassageoftime #reflections #growth #lifecycle #healingjourney #raredisease #Persephone #cicada #stardust #disability #chroniccommunity #spoonie #zebracommunity #notawarrior #chroniclife

On broken social contracts, #privilege, and who pays the price when the #Capitalist Wyt Supremacist #Patriarchy is allowed to perpetually influence the #MedicalIndustrialComplex . . . . . #MarginalizedPatients #EmpowerYourPatients #MedicalGaslighting #MedicalNeglect #disabled #MedicalGatekeeping #disability #medicalbias #chronicillness #chroniccommunity #spoonie #fatphobia #medicalfatphobia #hysteria #raredisease #traumainformed #CanaryInTheCoalMine #Epidemic #poetry #poetsofig #poetrycommunity #poetssociety #PoetryLovers #PoetsofInstagram #FeministPoetry

On #survival, and the #reframing of #tolerance when you’ve literally got nothing left to lose. . . . . . #soulstories #poetry #poetrycommunity #disabled #poetsofinstagram #poetsofig #feministpoetry #poetry #poems #poetrylovers #poetssociety #poetrygram #autoimmune #rareillness #thriving #traumaresponse #healingjourney #selflove #gaslighting #darkempath #narcissisticabuse #narcicissticmothers #soulstories #daughtersofnarcissisticmothers #healingjourney #nocontact #survivingnarcissistabuse #chronicillness #chroniccommunity #spooniecommunity

I don’t usually do *updates* here. But maybe this time it’s appropriate to do one. I write a lot about #chronicillness and #disability. This past year has landed me with some very significant #diagnoses. Diagnoses, after 25 years of begging for someone to take me seriously, have quickly escalated me to the level of ‘rare illness no one has ever seen in person before’. The majority of my illnesses are housed in my Central Nervous System, and at this point, we’re not entirely clear precisely all that we’re dealing with. We know this much: I’m pretty profoundly #disabled and that wont change. I have an extremely rare #braindisease that affects approximately 1 in 3 million people, I have #MS, #Dysautonomia, and #PrimarySjogrensSyndrome. I also have a disintegrating spinal column, a body riddled with several types of neuropathy, and have gone into metabolic/ #organfailure this past year. I’m on daily oral chemo (soon to start infusions, as well), and I’m losing my ability to walk fairly often, too. There’s more, but I promise you don’t need my medical pedigree to understand that these illnesses are impacting my ability to write. I spent most of the year severely cognitively impaired, but recent infusions have given me a bit of clarity, and some of my words are returning. I’m trying HARD to connect with my writing again. So forgive the clunkyness while I try to find my voice again. I don’t know how long this clarity will be here. But I’m trying to keep it. 🖤 #disabilibabe #spoonie #chroniccommunity #zebrastrong #mysterydiagnosis #raredisease #zebra #rarediseasecommunity #CNSsmallvesselvasculitis #sjogrenssyndrome #brainfog #multiplesclerosis #ppms #cognitiveimpairment #medicalneglect #medicalgaslighting #hystericalwoman #believepatients #chronicpain #stillhotthough🔥

Throwback to a month ago for our work professional headshots...at this point I was feeling shite but was able to cover it up with make up and a smile 🙃🙃🙃 thankfully good lighting and editing also helped. A month later make up doesn't work and the smiles aren't seen as often due to the discomfort and sheer frustration. Saying that I've been showing up at work, and at social events. Whether that's a good thing or not I'm not sure but I've kept going. One thing I do need to improve on is getting myself back into the gym. I'm back in the rut of I don't have the energy to go but also I know it'll help when I do. So that's what I'm going to try to do this week 🤞🏽🤞🏽 . . . . . . . #ralife #rawarrior #rheumatoidarthritis #rheumatoidarthritislife #chronicpain #chroniccommunity #arthritis #arthritislife #arthritiswarrior #methotrexate #methotrexatelife #immunocompromised #immunosuppressed #chronicillness #jointpaint #rheumatology #sulfasalazine

Reminders for the day ❤️ #chronicillness #invisibledisability #chronicillnessawareness #invisibleillnessawareness #raredisease #fighter #livingwithchronicillness #chroniccondition #chroniccommunity #invisibleillness #chdawareness #openheartsurgery #survivor #mitralstenosis #tetralogyoffallot #openheartsurgery #mitralvalvereplacementoperation #bloodthinners #warfarin #CHD #vsd #pacemaker #completeheartblock #cardiomegaly #cardiomyopathy #leftsidedheartfailure #leftventriculardysfunction #pacemakerwarrior #aorticstenosis #overridingaorta #pulmonaryhypertension

Shared on Millions Missing Voice on Facebook. Happy to tag them if they are on Instagram

You're allowed to change your mind and mood surrounding your chronic illness. Having grief doesn't label you as negative and being positive or hopeful of remission and healing through alternative methods isn't toxic positivity. At the end of the day we are all going through it! . . . #realtalk #community #chroniccommunity #chronicillnessawareness #chronicillness #ms #rheumatoid #fibromyalgia #chronicpain #spoonie

Tuesday May 21st 2024!! 6.30pm BST ✨ BE THERE!! 🥄💕 The second Spoonie Hang is a cometh!! ☺️ It’s gonna include chats, songs, improv storytelling stuff AND a live Q&A… the emergency beard may also make an appearance IYKYK 😂 You can send me your questions in the comments here! Or as a DM or wait til the day and ask there and then! 💜 And I’ll be singing a song for you guys too!! Again I’ll be picking from your requests! It can be one of my parody’s (check @itsaliceella page!) or a ‘serious’ song if thats what you really want 😂🤷🏻‍♀️ All you need to do is click the link in my bio to sign up- yep it’s FREE ☺️ and on the day of the hang, the zoom link will be on Patreon for you to click and join in the forced fun! 😂🙌🏻 As always, there’s no pressure, you can watch with your cameras off or on 🙌🏻 And the vibe will of course be very chill, come and go as you like- if you’re feeling rubbish and need to leave that’s also alright! I really want it to feel as safe and inclusive as possible! If you have any questions or requests please ask here in the comments or send me a DM 💌 Love and spoons 🥄💜 xoxo [ ID: A purple background with white text which reads ‘TUESDAY MAY 21ST 2024 SPOONIE HANGOUT 2 WITH ALICE ELLA INFO →’ The next slide reads: ‘MAY 21ST 2024 6.30 PM - 7.15 PM ITINERARY : 6.30pm: Check in, introductions 6.40pm: Song request 6.45pm: Live Q&A 7pm: Story time, prompted by YOU 7.15pm: Fin WHAT YOU’LL NEED : - Your fine ass - If you’a like to prepare a question for the Q&A please do! If you CBA that’s absolutely fine. ZOOM LINK: This can be found on Patroen. Simply click the Patreon link in my Instagram bio. It’s FREE to join, and the zoom link will be posted on Patreon, on the day of the hang.’ There’s a little drawing of Alice’s black and white cat Ollie and an illustration of a spoon too! ] 💜 #SpoonieHangouts #SpoonieSupport #SpoonieLife #Spoonie #SpoonieCommunity #ChronicIllnessSupport #DisabilityInclusion #InvisibleIllnessWarrior #ChronicIllnessHumor #Spoonies #SpoonieSisterhood #SpoonieSisters #ChronicCommunity #OnlineEvents #Accessible #DisabledCommunity #VirtualEvents #VirtualEvent

𝑴𝒊𝒔𝒔 𝑵𝒆𝒕𝒉𝒆𝒓𝒍𝒂𝒏𝒅𝒔 Barbie realized this was a 'once in a lifetime' opportunity. The other girls would have more chances if it didn't work out this time, but she did not. Barbie was well aware that her lack of health was increasingly limiting her opportunities in life. She fought against it, adventurous as she was, but deep down she knew it. She also knew that she needed support. She could walk, but would never be able to do so for a whole day. She had to bring in her wheelchair. She rested in between but walked the catwalk. There were several regular rounds, with prescribed clothing and shoes, and there was a round in bikini. The catwalk was long. The catwalk was also high. A friendly man - everyone was very friendly - helped the girls one by one very gallantly onto the catwalk. Barbie bowed slightly to him when he helped her on. But then it went wrong. First because Barbie was very shaky when the man helped her onto the catwalk for another round. He noticed. "Are you OK?" “Yes,” Barbie replied, “I'm fine.” She was used to this and knew by experience that she was still able to keep going. But after four full rounds on the catwalk, her body couldn't take it anymore, even though she had been able to sit in between. Things really went wrong right in the middle of the catwalk. This time it was more serious, and besides, the jury had seen it. Everyone had seen it. Barbie got back up as gracefully as she could, but she knew at that moment it was over. Staggering twice on a few meters of catwalk was too much. She was right. The jury decided to remove her from the competition because they thought it was no longer medically responsible to keep her in, and too much risk. It was clearly asking too much of Barbie. She was thanked profusely. She was the first girl who had participated in the regular Miss Netherlands competition from a wheelchair. That took a lot of courage. After all, she would be judged just as harshly as the other girls. After all, it was indeed a 'once in a lifetime' and it meant the world to Barbie that she had been allowed to participate in the official Miss Netherlands contest. No one could take that from her ♡. - real story, 2017.

One of the worst things I did at the beginning of my diagnosis was compare myself to others with the same illness to see how my healing was measuring up. Anytime I'd be "behind," it would throw off my week (or month) and lead to feeling depressed, ashamed, and even panicked. Eventually, I learned that everyone's body is so different, and the same things impact us in different ways. Comparing yourself to someone else's healing timeline can be counterproductive to actually healing. When I learned to embrace where I was, give myself and my body grace, and grieve my reality, it made a world of difference. #chronicillness #chronicpain #invisibleillness #chronicillnesshumor #autoimmunedisease #painmanagement #chronicallyill #chronicallysick #chronicallyawesome #chronicallyillmom #foodrestrictions #gutissues #glutenfree #dairyfree #sugarfree #fodmapfree #chronicillnesswarrior #chroniccommunity #chronicillnesssucks #silentillness #hiddenillness

From @colourblind_zebra

https://www.tumblr.com/frogsupportanarchy/742749740455870464/just-because-im-not-in-my-wheelchair-today

Full permission to take off the battle armor and take a nap, friend 💤 I see you doing a great job. #chronicillness #chronicpain #invisibleillness #chronicillnesshumor #autoimmunedisease #painmanagement #chronicallyill #chronicallysick #chronicallyawesome #chronicallyillmom #foodrestrictions #gutissues #glutenfree #dairyfree #sugarfree #fodmapfree #chronicillnesswarrior #chroniccommunity #chronicillnesssucks #silentillness #hiddenillness

Does anyone else have to make 99.9% of all their food from scratch due to chronic illness and food restrictions? I miss granola bars and takeout 😭 #chronicillness #chronicpain #invisibleillness #chronicillnesshumor #autoimmunedisease #painmanagement #chronicallyill #chronicallysick #chronicallyawesome #chronicallyillmom #foodrestrictions #gutissues #glutenfree #dairyfree #sugarfree #fodmapfree #chronicillnesswarrior #chroniccommunity #chronicillnesssucks #silentillness #hiddenillness #chronicillnessmemes #chronicillnesshumor

From @thepotsiepanda

Nicole, 22 from Cleveland, Ohio was diagnosed with POTS, anxiety & depression at the age of 20 after waiting 5 years for a diagnosis. Her daily symptoms include fatigue, body pain, and headaches. Her favorite POTS friendly activity is Pilates, although she also loves naps, seeing her chiropractor, and drinking electrolytes to help alleviate her symptoms. “It’s important to listen to your body and find a provider that will listen to you. Unfortunately many of them brushed off my symptoms as anxiety,” says Nicole. “It took me missing weeks of work to get a proper diagnosis and symptom management plan.” #undefinedbypots #potssyndrome #potsies #spoonies #spoontheory #chronicillnesswarrior #dysautonomia #dysautonomiaawareness #potsawareness #edssyndrome #chronicfatigue #eds #pots #dyswarrior #chronicillness #potscommunity #dyscommunity #mentalhealthawareness #strong #mentalhealthawareness #dyscommunity #impact #chroniccommunity

𝑭𝒓𝒆𝒆 𝒔𝒑𝒊𝒓𝒊𝒕 "Well, I am going anyway!" Stubborn, sensual, free spirit, life artist. ♡ Yes, she pushed herself too hard sometimes. On the other hand, it was also her willpower and mental strength that pushed her through when things got critical. Barbie's mom in a coachings session: "𝑌𝑒𝑠, 𝑠𝘩𝑒 𝘩𝑎𝑠 𝑎𝑙𝑤𝑎𝑦𝑠 𝑏𝑒𝑒𝑛 𝑡𝘩𝑎𝑡 𝑤𝑎𝑦. 𝐴𝑛 𝑎𝑑𝑣𝑒𝑛𝑡𝑢𝑟𝑜𝑢𝑠, 𝑢𝑛𝑟𝑢𝑙𝑦 𝑏𝑢𝑡 𝑎𝑙𝑠𝑜 𝑖𝑛𝑐𝑟𝑒𝑑𝑖𝑏𝑙𝑦 𝑠𝑤𝑒𝑒𝑡 𝑘𝑖𝑑 𝑤𝑖𝑡𝘩 𝑎𝑛 𝑒𝑛𝑜𝑟𝑚𝑜𝑢𝑠 𝑧𝑒𝑠𝑡 𝑓𝑜𝑟 𝑙𝑖𝑓𝑒. 𝑆𝘩𝑒 𝑚𝑎𝑑𝑒 𝑡𝘩𝑒 𝑚𝑜𝑠𝑡 𝑜𝑓 𝑒𝑣𝑒𝑟𝑦𝑡𝘩𝑖𝑛𝑔. 𝐼 𝑐𝑒𝑟𝑡𝑎𝑖𝑛𝑙𝑦 𝑒𝑛𝑗𝑜𝑦𝑒𝑑 𝘩𝑒𝑟 𝑎𝑛𝑑 𝑤𝑎𝑠 𝑝𝑟𝑜𝑢𝑑 𝑜𝑓 𝘩𝑒𝑟, 𝑚𝑦 𝑙𝑖𝑡𝑡𝑙𝑒 𝑔𝑖𝑟𝑙! 𝐵𝑢𝑡 𝘩𝑜𝑤 𝑑𝑖𝑓𝑓𝑒𝑟𝑒𝑛𝑡 𝑠𝘩𝑒 𝑤𝑎𝑠 𝑓𝑟𝑜𝑚 𝑚𝑦𝑠𝑒𝑙𝑓. 𝑆𝘩𝑒 𝑑𝑖𝑑 𝑎𝑛𝑑 𝑑𝑎𝑟𝑒𝑑 𝑒𝑣𝑒𝑟𝑦𝑡𝘩𝑖𝑛𝑔 𝑡𝘩𝑎𝑡 𝐼 𝑑𝑖𝑑𝑛'𝑡 𝑑𝑎𝑟𝑒. 𝑇𝘩𝑎𝑡 𝑠𝑜𝑚𝑒𝑡𝑖𝑚𝑒𝑠 𝑐𝑙𝑎𝑠𝘩𝑒𝑑, 𝐼 𝑡𝘩𝑖𝑛𝑘 𝐼 𝑙𝑖𝑚𝑖𝑡𝑒𝑑 𝘩𝑒𝑟 𝑤𝑎𝑦 𝑡𝑜𝑜 𝑚𝑢𝑐𝘩. 𝑆𝘩𝑒 𝑖𝑠 𝑎 𝑓𝑟𝑒𝑒 𝑠𝑝𝑖𝑟𝑖𝑡 𝑙𝑖𝑘𝑒 𝘩𝑒𝑟 𝑓𝑎𝑡𝘩𝑒𝑟, 𝑏𝑢𝑡 𝑠𝘩𝑒 𝑛𝑒𝑒𝑑𝑒𝑑 𝑚𝑒 𝑚𝑜𝑟𝑒 𝑡𝘩𝑎𝑛 𝐼 𝑟𝑒𝑎𝑙𝑖𝑧𝑒𝑑. 𝐼 𝑡𝘩𝑖𝑛𝑘 𝐼 𝑎𝑚 𝑓𝑖𝑛𝑎𝑙𝑙𝑦 𝑠𝑒𝑒𝑖𝑛𝑔 𝘩𝑒𝑟 𝑓𝑜𝑟 𝑤𝘩𝑜 𝑠𝘩𝑒 𝑖𝑠." - real story, 2024 I'm so incredibly proud of my mom! ♡♡ #barbiememethod #barbielife #barbiegram #barbiestories #motherdaughter #motherdaughterrelationship #health #psychology #zebra #chronicillness #chronischziek #kritiekziek #moederdochter

From @how.u.feeling

Do you remember what it's like to go out spontaneously, feel heard/understood by people, or trust a doctor fully to support you and treat you? #chronicillness #chronicpain #invisibleillness #chronicillnesshumor #autoimmunedisease #painmanagement #chronicallyill #chronicallysick #chronicallyawesome #chronicallyillmom #foodrestrictions #gutissues #glutenfree #dairyfree #sugarfree #fodmapfree #chronicillnesswarrior #chroniccommunity #chronicillnesssucks #silentillness #hiddenillness

Strength isn't about hiding our vulnerabilities or pretending to have it all together – it's about embracing our flaws with courage and resilience. My story isn't sad – it's a testament to the resilience it takes to navigate life's challenges as a disabled person. I have chosen to redefine strength and celebrate the realness of my journey. #ResilientJourney #MyStoryIsStrength #chronicillness #chronicpain #invisibleillness #autoimmunedisease #painmanagement #chronicallyill #chronicallysick #chronicallyawesome #chronicallyillmom #chronicillnesswarrior #chroniccommunity #chronicillnesssucks #silentillness #hiddenillness #wheelchairuser #disabledcreator

So not only do we have to navigate the huge changes that chronic illness made to our lives, manage the chronic illness itself, manage symptoms/supplements/meds/doctor visits, and more daily...we have to manage the emotions that come from the daily reminders of what life used to be like. Let yourself grieve and feel your feelings today, friends. #chronicillness #chronicpain #invisibleillness #chronicillnesshumor #autoimmunedisease #painmanagement #chronicallyill #chronicallysick #chronicallyawesome #chronicallyillmom #foodrestrictions #gutissues #glutenfree #dairyfree #sugarfree #fodmapfree #chronicillnesswarrior #chroniccommunity #chronicillnesssucks #silentillness #hiddenillness

https://twitter.com/angryhacademic/status/1757873494748979689 Please post if you know this account has an Instagram account and you know their username

Starting warfarin for the first time can be a bit nerve-wracking, but it's important to trust your healthcare team and follow their instructions. #chronicillness #invisibledisability #chronicillnessawareness #invisibleillnessawareness #raredisease #fighter #livingwithchronicillness #chroniccondition #chroniccommunity #invisibleillness #chdawareness #openheartsurgery #survivor #mitralstenosis #tetralogyoffallot #openheartsurgery #mitralvalvereplacementoperation #bloodthinners #warfarin #CHD #vsd #pacemaker #completeheartblock #cardiomegaly #cardiomyopathy #leftsidedheartfailure #leftventriculardysfunction #pacemakerwarrior #aorticstenosis #overridingaorta #pulmonaryhypertension

Out here fighting the good fight 🫠😭 #chronicillness #chronicpain #invisibleillness #chronicillnesshumor #autoimmunedisease #painmanagement #chronicallyill #chronicallysick #chronicallyawesome #chronicallyillmom #foodrestrictions #gutissues #glutenfree #dairyfree #sugarfree #fodmapfree #chronicillnesswarrior #chroniccommunity #chronicillnesssucks #silentillness #hiddenillness #chronicillnessmemes #chronicillnesshumor

MY FAVORITE ELECTROLYTE BOTTLED DRINKS FOR POTS!!! 💧 *this post is not sponsored* I just wanted to make a simple list of a couple of my go tos that I grab when I’m on the go at the store. What’s your favorite? Any recommendations to add to this list? 😋 🧉 #undefinedbypots #potssyndrome #potsies #spoonies #spoontheory #chronicillnesswarrior #dysautonomia #dysautonomiaawareness #potsawareness #edssyndrome #chronicfatigue #eds #pots #dyswarrior #chronicillness #potscommunity #dyscommunity #mentalhealthawareness #strong #mentalhealthawareness #dyscommunity #impact #chroniccommunity #hydration #electrolytes

https://www.tumblr.com/iamtherabbitinwonderland/626815739082440705

I asked, you answered. This is what fatigue means from real people from the chronic illness community. Thank you for sharing how fatigue feels to you and the immense challenge and impact fatigue has on daily life. 🛌 #undefinedbypots #potssyndrome #potsies #spoonies #spoontheory #chronicillnesswarrior #dysautonomia #dysautonomiaawareness #potsawareness #edssyndrome #chronicfatigue #eds #pots #dyswarrior #chronicillness #potscommunity #dyscommunity #mentalhealthawareness #strong #mentalhealthawareness #dyscommunity #impact #chroniccommunity #fatigue #potsfatigue

https://www.tumblr.com/dizzy1ife/742645870897594368/better-world-chronic-illness-makes-you-immune-to

Chronic illness. Invisible illness. Whatever you call it... There's no "get well soon". It's not always invisible if you pay close attention. You can think you're at a good place and then feel like you get hit by a Mack truck. It's not quantifiable. Sometimes it's even hard to put into words. What I do know for sure is it's met with those who fight like no other. Those tougher than you could ever imagine. Those who smile and you just don't know how heavy the weight of their every day really is. Be kind to everybody. You never know what another carries unless they speak their whole truth, often, and with regularity. #controlwhatyoucan #chronicillnesscoach #invisibleillness #chronicillness #chroniccommunity #endometriosis #chronicillnesswarrior #zebralife #chronicillnessadvocate

𝑮𝒊𝒗𝒊𝒏𝒈 𝒊𝒏 It's really hard for me to write this post but I know I have to do it. In the context of 'practice what you preach', this is also what I had in mind with my methodology; making talking about difficult things a little less hard. I like to use Barbie metaphors for situations that I want to express myself about but that are really difficult for me, or in which others also had a role that I want to protect, so that I gave them the role of Ken, f.e. Sometimes I use my Barbie-me and write in the 3rd person, other times I write in the 1st person. It is precisely that variety that helps me to keep it real and personal, while, no matter how serious it may be at times, it still remains playful in a certain way and doesn't become too hard on me. I'm actually really curious for how you guys experience it, does it make reading about difficult subjects more accessible, or not? And do you recognize yourself in (parts of) my metaphors? Eight years ago, 2016, I received my 1st wheelchair after I had been suffering for a long time. I got the wheelchair because of a letter from my doctor saying that I really needed it. I remember how confused I felt because even though the symptoms were real, I was still doing everything. The wheelchair was completely custom made, that was quite a hassle! At first I was really happy with it. My world would open up again. But soon I HATED the thing. This was because of the looks of people, the way they suddenly treated me and all the changes in my life. It was a nightmare for me, it was traumatic. The details are still too difficult for me to talk about. Anyway, mainly through willpower, I ended up doing it without a wheelchair for another 8 years! That means, I used it as little as possible until eventually since 2020 not at all anymore. But lately I can't help but recognize that sometimes my 'issues' really are stronger than me. Even my 'iron willpower' can sometimes no longer fight through it. I fear that I'll have to give in to it; it really ís stronger than me sometimes now. And with my nature and fighting mentality, admitting that is perhaps the strongest thing I have ever done... ♡

https://www.tumblr.com/hellyeahsickaf/742593948200157184/when-i-say-i-cant-do-that-what-im-not-saying

I believe this is from @chronicallycandidlymemes Text: “Adding yet another new doctor to my list of assholes who wronged me”

Happy #WorldPHDay friends! Pulmonary arterial hypertension is a rare, progressive disease, that affects the arteries in the lungs that lead to the heart. The pulmonary arteries become static and constricted, and can lead to right heart failure, if not diagnosed appropriately. Treatment for pulmonary arterial hypertension consists of pump medications that run continuously, oral medications, and inhaled therapies. Without proper diagnosis and treatment, the disease progresses and can be fatal. Pulmonary hypertension was the rain, and the storm that came and tried to blow this house down. But I am so thankful that I had a firm foundation built on Jesus. I am so grateful that he has always blessed and interceded on my behalf, I honestly don’t know if I would have made it otherwise. I say it all the time, friends, but pulmonary hypertension has given me so much more than it’s taken, here are some of the things that I look back on in the last six years and realize I have learned and gained through this disease. #Subqremo #sickfightsback #invisibleillnessawareness #spoonielife #noteverydiseaseisvisable #chronicillnessawareness #heartfailure #pulmonaryhypertension #chronicillnesswarrior #imawarethatimrare #rarediseaseawareness #phighter #mentalhealth #chronicillness #invisibleillness #livingwithph #invisibledisability #invisibledisease #raredisease #phwarrior #livingwithchronicillness #patientleader #patientadvocate #butyoudontlooksick #clincialtrial #pulmonaryhypertensionadvocate #notalldisabilitiesarevisible #sotatercept #chroniccommunity

An update for you all. I had my annual rheumatology appointment in January where my Rheumatologist noticed I couldn't hold my right hand out flat. My index and middle fingers drop down. He suggested I have an ultrasound but he didn't think there would be active inflammation. Fast forward a couple of months. I had my ultrasound at the beginning of April where I was told I do in fact have active inflammation so cue a letter from my Rheumatologist (let's take a moment to appreciate his writing style) ...but I've been asked to up my current medication. I'm currently taking 12.5mg methotrexate weekly (that's my maximum dose as any higher than that was affecting my liver markers) and sulfasalazine 2g a day (2 tablets in the morning 2 tablets in the evening). I've been asked to gradually make this 3g a day so (3 tabs am and pm) and then will consider Biologics 💉 So here I am day 1 of taking 3 tablets in the morning as I thought I'd treat myself to extra headaches for the bank holiday weekend Additionally I've also now got some sort of eczema around my eyes. So rather than walking around with a so called invisible illness I look visibly ill where I get asked very regularly if I'm ok, because it genuinely looks like I've been crying. Considering being put down because quality of life isn't all that (fleeting dark thought right there- I'll be ok just frustrated right now) . . . . . . . #ralife #rawarrior #rheumatoidarthritis #rheumatoidarthritislife #chronicpain #chroniccommunity #arthritis #arthritislife #arthritiswarrior #methotrexate #methotrexatelife #immunocompromised #immunosuppressed #chronicillness #jointpaint #rheumatology #sulfasalazine

https://twitter.com/humorchronic/status/1758966679378202921 From @funnychronicillnesses

In case you can’t read it, the text at the bottom says “when you’re disabled but the government says your able-bodied enough to work/not get SSI” [disability payment] https://www.tumblr.com/anxious-and-in-pain/743243450773848065

𝑻𝒐 𝒕𝒉𝒆 𝒕𝒐𝒑 Ken: "Love, it doesn't matter where I am, as long as I'm with you!" & "So what? Then we'll just take you in (an all-terrain) wheelchair up on the mountain" - real story, 2018. Maybe it was his crush on Barbie, or just his youth, but this was what Barbie needed. Someone who saw through her situation and saw her for who she was. Someone who was as strong-willed and adventurous as she was. Someone who would persevere, to the top and beyond... #barbiememethod #barbieme #barbie #ken #barbiestories #barbielovestories #lovestories #chronicillness

𝑩𝒖𝒕 𝒎𝒐𝒎𝒎𝒚... Six year old Barbie: "But mommy, we can take you in a wheelchair! Then we can take you everywhere and you don't have to walk, it won't be too much for you anymore!" It seemed like the best idea ever in Barbie's little mind. She was thrilled by the idea, finally she would have her mom with her. But Barbie's mom refused. She never tried, in all those years. And Barbie was still alone. No mom around. She missed a mother and felt abandoned. Why would her mom, who stayed in bed, refuse to use a wheelchair if that would have given her the opportunity to be a mother again? - real story. It's not just the time I missed with my mother back then, when I was little and needed her most. It's also the example she could have been for me now*. But once again I'm on my own and have to invent the wheel myself. And that's hard. It hurts. But with these online communities we are not so alone anymore. ♡ ~ Tbh I also hope to inspire my mom... ♡ To talk about her own struggles. Why was it so hard to do this for us and for herself when she really needed it? (This song is for you mom, X) #barbiememethod #barbieme #barbiegirl #barbielife #barbiegram #barbiestories #realstories #chronicillness

Chronic illness: can't afford a vacation, have to afford medical bills and groceries 🫠 #chronicillness #chronicpain #invisibleillness #chronicillnesshumor #autoimmunedisease #painmanagement #chronicallyill #chronicallysick #chronicallyawesome #chronicallyillmom #foodrestrictions #gutissues #glutenfree #dairyfree #sugarfree #fodmapfree #chronicillnesswarrior #chroniccommunity #chronicillnesssucks #silentillness #hiddenillness #grief #chronicillnesshumor #chronicillnessmemes #memes

https://twitter.com/angryhacademic/status/1757873489569038504 Please post if you know this account has an Instagram account and you know their username

https://www.tumblr.com/chronicallydragons/741727024056516608/anyone-else-ever-wish-they-could-lie-down-harder

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Does anyone else miss being able to vacuum without needing a break or nap?? 😭 #chronicillness #chronicpain #invisibleillness #chronicillnesshumor #autoimmunedisease #painmanagement #chronicallyill #chronicallysick #chronicallyawesome #chronicallyillmom #foodrestrictions #gutissues #glutenfree #dairyfree #sugarfree #fodmapfree #chronicillnesswarrior #chroniccommunity #chronicillnesssucks #silentillness #hiddenillness #grief

What is Lupus? 💜 As a person with lupus that has had it explained to them hundreds of times - I’m still not even sure I fully understand. But here is the breakdown on the type of disorder, symptoms, risk factors, and treatment. What do you know about lupus? Are you a fellow spoonie? Follow for more lupus and autoimmune content all month long (and on and on)! 🎀 #lupus #lupusawareness #lupuswarrior #autoimmune #autoimmunedisease #chronicillness #chroniccommunity #pain #experience #myexperience #life #lifestyle #lifestyleblogger

Look what our friends over at @thechroniccolab are cooking up in preparation for action on #WorldMEDay 🙌🎉🙏💫🤩❤️ We are proud to be represented in one of the photos on their banner here. Huge thanks to @thechroniccolab and @notrecovereduk for ensuring everyone has a voice ❤️🧡💛 # #GonnaStartARevolutionFromOurBeds #MEAwarenessMonth #chroniccommunity

https://twitter.com/NeleHelena/status/1757355138530807867

I feel this on a CELLULAR level. Food restrictions mean making *every* *single* *meal* at home, and the burnout is REAL. #chronicillness #chronicpain #invisibleillness #chronicillnesshumor #autoimmunedisease #painmanagement #chronicallyill #chronicallysick #chronicallyawesome #chronicallyillmom #foodrestrictions #gutissues #glutenfree #dairyfree #sugarfree #fodmapfree #chronicillnesswarrior #chroniccommunity #chronicillnesssucks #silentillness #hiddenillness #grief #chronicillnesshumor #chronicillnessmemes #memes

Another round of things you can no longer relate to when you have chronic illness. What else would you add? #chronicillness #chronicpain #invisibleillness #chronicillnesshumor #autoimmunedisease #painmanagement #chronicallyill #chronicallysick #chronicallyawesome #chronicallyillmom #foodrestrictions #gutissues #glutenfree #dairyfree #sugarfree #fodmapfree #chronicillnesswarrior #chroniccommunity #chronicillnesssucks #silentillness #hiddenillness #grief

Some people with chronic illnesses may sadly be able to relate https://x.com/emmaketchup7/status/1361899938599243776?s=20

From @whitneydafoe https://twitter.com/dafoewhitney/status/1576240524805042177