We can all agree that things have been pretty unpredictable on Twitter lately. Please stay in touch with us here: creakyjoints.org/creakychats…

Invisible Disabilities Week ends today. But for millions living with chronic illness and invisible disabilities, the pain, fatigue, stigma, and daily challenges don't end when awareness week does. You can look healthy and still be struggling. You can have a good day and still be disabled. And you shouldn't have to prove your pain to deserve compassion, understanding, or accommodations. As we close out #InvisibleDisabilitiesWeek, let's remember that awareness is only the beginning. Real change happens when we listen, believe people, challenge misconceptions, and make accessibility a priority. Because nobody should have to look sick to be taken seriously. What's one thing you wish more people understood about living with an invisible illness? #InvisibleDisabilities

Giant cell arteritis (GCA) can cause permanent vision loss if left untreated. On #TheHealthAdvocates, Connecticut State Rep. Tom O'Dea joins Steven Newmark to share his experience with symptoms, diagnosis, and treatment. 🎧 Tune in: youtube.com/watch?v=gKcXjlwY… #GCAAwarenessDay #GiantCellArteritis #VisionHealth #Vasculitis #HealthyAging

"Go see your doctor. Don't be afraid." On Giant Cell Arteritis (GCA) Awareness Day, Connecticut State Representative Tom O'Dea shares his advice for adults over 50: if something feels off around your head, eyes, or jaw, don't brush it off. GCA is a serious inflammation of the arteries that can cause permanent vision loss without prompt treatment. Warning signs include new headaches, jaw pain when chewing, scalp tenderness, and vision changes. Over 50 with a new headache, jaw pain, or scalp tenderness? See your doctor right away. Sudden vision changes need emergency care. Learn more about GCA via link in bio or go to: ghlf.org/gca #GCAAwarenessDay #GiantCellArteritis #VisionHealth #Vasculitis #HealthyAging

A headache isn't always just a headache. Sometimes, recognizing the warning signs can save your sight. Today, October 23, is Giant Cell Arteritis Awareness Day. Giant cell arteritis (GCA), also known as temporal arteritis, is a serious form of vasculitis that causes inflammation in the arteries, particularly those supplying blood to the head and eyes. It primarily affects adults over age 50. Warning signs can include: 🔴 New or persistent headaches, especially around the temples 🔴 Scalp tenderness 🔴 Jaw pain while chewing 🔴 Blurred vision, double vision, or sudden vision loss 🔴 Unexplained fatigue, fever, or weight loss Why does early recognition matter? Without prompt treatment, GCA can cause irreversible vision loss. Recognizing symptoms and seeking urgent medical care can help prevent serious complications. Sudden vision changes require emergency medical attention, and suspected GCA should be evaluated urgently, even without vision symptoms. This #GCAAwarenessDay, we're reminding our community that symptoms shouldn't be dismissed and timely diagnosis matters. Awareness can protect sight. Early action can change lives. Learn more about GCA, its symptoms, diagnosis, and treatment: ghlf.org/gca #GiantCellArteritis #VasculitisAwareness

Could a simple blood draw help more Americans get screened for colorectal cancer? 🩸 On #TheHealthAdvocates, Dr. Sam Asgarian and Oliver Rocroi join us to discuss blood-based screening, its benefits and limitations, and what new USPSTF developments could mean for the future. Tune in now: youtu.be/-2YSa9tVtdA #ColorectalCancer #CancerScreening

Living with Sjögren’s disease? 🎙️ The Sjö, our NEW podcast, is officially LIVE! Real patient stories, expert insights, and honest conversations about life with Sjögren’s. Listen now: ghlf.org/thesjo/ #SjögrensDisease #TheSjö

Pain. Fatigue. Brain fog. Dizziness. For Melissa, those were the symptoms that felt most serious. But the clue that led her doctors to a Sjögren's diagnosis? Dryness, something she barely noticed and only mentioned in passing. 💧 If you're living with symptoms that are hard to explain, the "small stuff" might matter more than you think. Hear more of Melissa's story, plus insights from Sjögren's experts, on The Sjo podcast. 🎧 Listen now: ghlf.org/thesjo #SjoögrensDisease #Sjögrens #ChronicIllness #Autoimmune #PatientVoices #TheSjö

What should people with osteoarthritis know about their treatment options, and what happens when conservative care is no longer enough but surgery isn't yet the answer? On The Health Advocates, Dr. Vinod Dasa joins us to discuss OA care, access, shared decision-making, and innovation. Tune in: youtube.com/watch?v=LiXZWJL7… #Osteoarthritis #PatientAdvocacy

Explaining what it's like to live with arthritis isn't always easy. Especially to the people closest to you. How do you explain that you're exhausted even after a full night's sleep? That your pain can change from one day to the next? Or that canceling plans doesn't mean you don't want to be there? Sometimes, family and friends genuinely want to understand, but they don't know what living with arthritis actually feels like. And sometimes, finding the words to explain it can be exhausting in itself. A few things that can help: 💜 Be specific about how arthritis affects your everyday life. Sometimes examples make more sense than medical terms. 💜 Let people know what support looks like for you. Maybe it's help with a task, flexibility with plans, or simply someone who listens. 💜 Explain that symptoms can change. Having a good day doesn't mean your arthritis has disappeared. 💜 Remember that you don't have to justify every symptom or push past your limits to make someone else comfortable. You deserve to be understood, even when what you're experiencing isn't visible. If you've been struggling to explain arthritis to family or friends, this guide might help you start that conversation: creakyjoints.org/support/lif… 💬 What's one thing you wish your loved ones understood about living with arthritis? #WorldArthritisDay #ArthritisAwareness #ChronicIllness

Arthritis is more than joint pain. It's more than a diagnosis. And it's certainly not just a part of getting older. Today, October 12, is World Arthritis Day — a reminder that millions of people are living with conditions that can affect nearly every part of their lives, often in ways others cannot see. According to the CDC, more than 53 million U.S. adults — roughly 1 in 5 — have been diagnosed with arthritis. But behind that number are people whose lives don't stop when symptoms begin. People working through fatigue. Navigating chronic pain and inflammation. Losing sleep. Canceling plans. Adjusting routines. Trying to explain symptoms that may change from one day to the next. And sometimes, facing the exhausting task of convincing others that what they're experiencing is real. Arthritis doesn't have one face, one age, or one story. There are more than 100 types of arthritis and related rheumatic conditions, including osteoarthritis, rheumatoid arthritis, psoriatic arthritis, and juvenile idiopathic arthritis. Each comes with its own challenges, and no two people's experiences are exactly alike. That's why awareness must go beyond recognizing symptoms. It means taking pain seriously. Supporting earlier diagnosis and access to appropriate care. Understanding that disability isn't always visible. Making room for accommodations, rest, and the reality that someone's abilities can change from day to day. It also means listening to patients — not just talking about them. At CreakyJoints, we believe people living with arthritis deserve reliable information, compassionate care, and a meaningful voice in decisions affecting their health. And to everyone living with arthritis: You are more than your diagnosis. Your experiences matter. Your voice matters. And you deserve to be heard. This World Arthritis Day, we want to hear from you: 💬 What's one thing you wish the world understood about living with arthritis? Your answer might be exactly what someone else needs to hear today. Explore patient-centered arthritis education and support: creakyjoints.org/ Different journeys. One community. 💜 #WorldArthritisDay #ArthritisAwareness #CreakyJoints

How do 340B and PBMs affect what patients pay and whether they can access the care they need? Join @GHLForg's Steven Newmark, JD, and HEAL Collaborative’s Howard Mosby, CPA, on Oct. 8 at 12 PM ET for a virtual discussion on patient access, affordability, and safety-net care. Register: us06web.zoom.us/webinar/regi… #340B #PBMs #PatientAccess #HealthPolicy

Getting into bed doesn’t always mean getting rest. Joint pain can make it harder to fall asleep, wake you during the night, and make it difficult to get comfortable. And poor sleep can make pain and stiffness feel worse the next day — creating an exhausting cycle. From managing pain to adjusting your sleep routine, there are strategies that may help you get the rest your body needs. Learn more about osteoarthritis and sleep: creakyjoints.org/about-arthr… #Osteoarthritis #Arthritis

One of the hardest parts of living with chronic illness is that your symptoms don’t know it’s the weekend. You can have the time, the plans, and genuinely want to do everything — while your body is telling you it can’t. And that creates a constant calculation people around you may never see: If I go out today, will I pay for it tomorrow? If I rest, will I feel like I wasted my weekend? If I cancel again, will people eventually stop asking? If I push through, am I setting myself up for a flare? Living with chronic pain, fatigue, or another chronic condition can mean constantly negotiating between what you want from your life and what your body can realistically give you that day. Sometimes taking care of yourself means changing the plan. What’s one thing you wish people understood about weekends with chronic illness? #ChronicIllness #ChronicPain

For people managing chronic and complex conditions, prevention matters too. Join @GHLForg and @Walgreens Specialty Pharmacy on Sept. 30 for a conversation about why immunizations matter in specialty care, the barriers patients face, and how we can improve access and education. 🗓 Sept. 30 ⏰ 12 PM CT / 1 PM ET 🔗 Register: event.on24.com/wcc/r/5447224… #Vaccines #Immunization #PatientAdvocacy #SpecialtyCare

Your heart doesn’t always send a warning. ❤️ This #WorldHeartDay, know your numbers. High blood pressure and high cholesterol can exist without obvious symptoms, making regular checkups an important part of understanding your cardiovascular health. Know your risk. Talk to your health care provider. Don’t miss a beat. @worldheartfed #HeartHealth #CardiovascularHealth #DontMissABeat

We’re in Las Vegas for the @RheumAPP Annual Conference! 💙 It’s been a great opportunity to connect with rheumatology nurses and share @GHLForg resources designed to help patients better understand their health and navigate their care. Grateful for our continued partnership with @RhAPP and for everyone stopping by to connect, share insights, and help us keep patients at the center of the conversation. #PolymyalgiaRheumatica #PMR

UNGA Week brings health leaders from around the world together to exchange ideas about public health, innovation, access, and cost. On the latest Health Advocates, @GHLForg's @StevenNewmark shares why these global conversations matter for patients. Tune in: youtube.com/watch?v=TI4waLPU… #UNGA #GlobalHealth #PublicHealth #PatientAdvocacy #HealthPolicy

One of the most important things we can do is keep listening to people who live with chronic pain. Chronic pain doesn’t always look the way people expect it to. Someone can go to work, exercise, laugh with friends, take care of their family, post a smiling photo — and still be managing pain in the background. Over time, many of us simply get very good at functioning while hurting. And pain isn’t just a number from 0–10. It can affect sleep, movement, energy, concentration, mood, relationships, work, and the thousands of little decisions that make up everyday life. Two people who both describe their pain as a “6” may be having completely different experiences. Chronic pain can fluctuate, too. There are better days, harder days, and flares. Having a good day doesn’t mean someone is “better,” just as being able to function doesn’t necessarily mean their pain is mild. That’s why listening matters. Instead of “But you look fine,” try: “How are you doing today?” “What would make things easier?” “How can I support you?” Sometimes one of the most meaningful forms of support is simply believing someone when they tell you they’re in pain. Awareness is a start. Listening, learning, and making space for lived experience is what gives it meaning. #ChronicPain #InvisibleIllness

Science matters most when people can understand it — and use it. Today, @GHLForg brought together 22 patient advocacy organizations for a symposium exploring the evolving role of monoclonal antibodies in preventing infectious diseases, including COVID and RSV. Getting important science from experts to the people who need it takes more than research alone. It takes conversation, questions, and collaboration between scientists, clinicians, advocates, and the organizations communities already know and trust. Thank you to the experts, moderators, advocates, and partners who joined us for this important conversation. And this is just the beginning. We’ll be turning what we learned into accessible educational resources — including articles, an explainer video, and more — to help bring this science to the communities we serve. #PatientAdvocacy #PublicHealth #MonoclonalAntibodies