Cancelling plans is an unfortunate part of chronic illness — but you can take steps to turn an unexpected evening home into an act of self-care.
Learn some common myths about quality of life — and why it’s key to discuss whether you’re living well despite your illness at your next rheumatology visit.
Members of the Global Healthy Living Foundation and CreakyJoints community reflected on the past year — and what they’ve learned in 2021 to better manage their physical and emotional health.
Two local artists are shattering old-fashioned beauty standards and perceptions of people with disabilities with pin-up-style depictions of women with mental and physical disabilities.
Living with a chronic illness is hard. Asking others for help isn’t easy either. Here’s why many people struggle to ask for help, and how to start reaching out to get the support you need.
From co-designing a shirt with a fellow rheumatoid arthritis patient to having people with chronic illness as models, designer Michael Kuluva continues to ensure his New York Fashion Week show is inclusive and raises awareness.
Join migraine patients as they explore the challenges, hopes, and triumphs of living with migraines.
Realiza un seguimiento de tus síntomas, tratamientos y otros datos de salud desde tu computadora o teléfono.
“Until now, only the people close to me would have known I have this disease,” says RA patient Deige Williams. “But participating in ArthritisPower has allowed me to step out of my comfort zone and speak up about the things that affect me and others."
The biggest similarity between rheumatoid arthritis and osteoarthritis is that they’ve both taken parts of my life that I won’t get back — a job I loved, activities I enjoyed, and simple physical freedoms.
“There’s not much support out there for those of us who don’t look like the RA ‘status quo,’” says RA patient Yaideliz Acevedo. “I want to share my story to help change that.”
“There are loads of people who fall into this new disease category who will be able get the treatment they need because of the wider diagnostic net it casts,” says non-radiographic axial spondyloarthritis patient Ricky White.
Recognizing that I needed disability benefits a few years after being diagnosed with juvenile arthritis was hard. The challenge of applying for and receiving disability was harder than it should have been.
When my rheumatoid arthritis progressed in my mid-20s and caused visible deformities in both my hands, I worried whether my hands were still going to be lovable. But after a decade of soul searching, I found the answer to that question depends solely on me.
“Even if you’re not a medical professional who knows how to narrow down a differential diagnosis, you’re still the best expert on what your body is experiencing,” says non-radiographic axial spondyloarthritis patient Sarah Islam.
Nearly a decade after being diagnosed with axial spondyloarthritis, I have not “overcome” my disease. But I have overcome society’s constantly reinforced internalized ableism.
“Because of my advocacy work I can better navigate the health disparities that are ever present in our medical system, but it still impacts me,” says rheumatoid arthritis patient Shantana Hazel. “At the end of the day, I'm always going to be a Black woman.”
Some of the most important lessons I’ve learned about living with a chronic illness like RA have come from fellow patients I connect with, like Kristen Brogan, a behavioral therapist who is using behavior change psychology to help her cope with her health conditions.
“When more Black men with RA can connect, advocate, and participate in clinical trials, we don’t just create community, we move the needle on the development of drugs that will help people of color have better control over their disease,” says rheumatoid arthritis patient Aberdeen “Deen” Allen.
The injuries that Kristal Kent endured while serving in the army have shaped the entire rest of her life. Here’s what she wants others to know about what it’s like to be a veteran with chronic health conditions.
Start by avoiding ableism and toxic positivity.
These were things I never had access to at the start of my patient journey 15 years ago. I couldn’t help but think how much more comfortable I might have been if they were available to me back then.
Because I spend all day studying pain and how it impacts patients like me, I thought I knew a lot about the best ways to manage my chronic pain. But working on an important new project taught me that I was wrong.
‘People believe that they “understand chronic pain” because they have also felt pain but it's a completely different thing when it's day in and day out for years.’
Michael Kuluva has been using his fashion line Tumbler & Tipsy to raise awareness for arthritis and chronic illness for years — and he knew he had to find a COVID-friendly way to keep it going.
‘Compared to what other people are giving up for us, this is nothing. It’s my little piece of what I can do to help.’
The coronavirus (COVID-19) pandemic is especially stressful for people with chronic diseases. The Global Healthy Living Foundation (GHLF) has developed a FREE program for patients and their families to access updated information, community support, and other resources tailored specifically to...
I didn’t need the PA and surgeon to tell me my neck was “major.” I knew it, yet I still doubted myself.
In the 28 years since we met, my husband has supported me through the stages of my multiple chronic conditions. But they have taken a toll on him, too.
You got this. I see you. Keep fighting. Gentle hugs.
‘We speak a certain language together only we can truly understand, through our shared lived experience.’
'A positive mindset will not cure my RA, but it will make it (and myself) a lot easier to live with.'
These need to stop so we can actually get the support we need.
Here’s a peek into what it’s like being a member of the RA club we never wanted join.
Don’t panic, shop for a good doctor, and ask lots and lots of questions.
For starters, remember this: ‘You are not your illness.’
Loneliness kills. Feeling lonely on a regular basis can shorten your lifespan by 26 percent, making it deadlier than obesity or alcoholism, according to a study published in the journal Perspectives on Psychology. One of the biggest risk factors for...
RA took away Eileen Davidson’s career and made being a single mother even more challenging. Here’s what helped changed her perspective on a devastating diagnosis.
#Spoonie women, you got this.
Like having the flu. Like you’re a real-life Tin Man. Like there’s always ‘radio static’ in the background. Which of these descriptions capture how arthritis makes *you* feel?
What it “in sickness and health” really means when you have chronic illness.
Tired of making new year's resolutions you never keep? Select an inspiring mantra to live by instead.
There's tired. And there's fatigue from chronic illness. Please don't confuse the two.
Nearly half of all Americans live with some type of chronic illness, according to the National Health Council. If that stat sounds bigger than you thought it’s probably because one of the worst parts of having an ongoing disease is...
Join us each month for a patient-driven conversation that explores topics that are important to the chronic disease community.
Tune in as we embrace audio storytelling as part of our mission to reach the chronic disease patient community.
Some of these might sound harsh, but keeping lines of communication open is so important.