By Kelsey Kloss
"Trying to balance turning on your immune system to fight your cancer — but not making your life more difficult as a result — is a hard thing to do. The doctors don't have all the absolute right answers and neither does anybody else. However, if you’re able to say what you’re feeling and what you think you need, that’s really important."
She remained asymptomatic for IgG4-RD until the silent disease brewing inside her led to the unexpected loss of a kidney.
By Susan Jara
After a 17-year diagnosis journey to IgG4-Related Disease, Nika is sharing her story and lessons to help others become proactive patients.
Patient advocate Ashley Krivohlavek, a quarter Cherokee, reflects on the health care challenges her grandparents faced on a reservation and contrasts it with her own experiences.
“I needed to learn to be transparent about how I felt and what was really going on with me. I had to know when to sit down but also find the strength to keep thriving.”
Tien Sydnor-Campbell uses her book and background in psychotherapy and bodywork to help inspire others with chronic illness to accept their pain and advocate for better care.
Christele Felix doesn’t apologize for having lupus. She doesn’t run from it either. Instead, she rises to the challenge each day and inspires others through her advocacy work with LupusChat.
Raven Miller, a single mom and creator of Raven Takes RA, shares her journey with rheumatoid arthritis, and how she finally reached a place of balance, optimism, and strength.
"I dream of a world where disability is ‘normal’ and celebrated," says youth disability advocate Derek Schmitz. "I want to help make that dream a reality. It's why I work so hard and advocate as fervently as I do — and I don’t plan on stopping anytime soon."
By Shani Erdman
Two new studies explore the unique health journeys, perspectives, and needs of Spanish-speaking patients with RA.
Getting a diagnosis of seronegative rheumatoid arthritis brought feelings of relief and disbelief for patient and researcher Dr. Shilpa Venkatachalam.
By Shani Erdman
Patient advocate Wigna Cruz shares her experience participating in an advisory board for Spanish-speaking patients with RA — and how it evolved into a flourishing support group.
How rheumatoid arthritis patient Vanessa Kerr overcame the challenges of limited access to care in a rural area.
By Shani Erdman
For patient advocate Ashley Krivohlavek, collaborating in her health journey has led to fewer symptoms and greater quality of life.
Patient advocate Stephanie Aleite explores how calculating an event’s value could help people living with chronic illness prioritize how they expend energy and improve their social support and well-being.
“My diagnosis of RA came with significant loss. Several years later, I can proudly say I have gained more than I lost. I am a better person because of the things that RA took away.”
Whether in the beginning, middle, or end, the school year can be exhausting for parents with chronic illness. Try these tips to help you save energy and stress.
By Angie Ebba
Mental health mainstays like walking outside aren't an option if you're bed- or housebound — but these creative alternatives can help.
Looking for a way to remind yourself about daily goals, self-care, and overall good mental well-being? Here's how a game-like app can help.
Rheumatoid arthritis patient and family nurse practitioner Stefanie Remson shares how she’s managed the feelings of depression, anxiety, loneliness, and inadequacy that came with her diagnosis.
By JP Summers
In honor of World Heart Day, JP Summers, Patient Advocate, Community Outreach Manager at the Global Healthy Living Foundation, shares her experience with heart failure — and what lessons you can take away too.
By Angie Ebba
“Trying to give a number to my pain makes me feel like I’m minimizing the experience of what pain really means in my daily life.”
Patient advocate Shelley Fritz shares her infusion day diary, including what she does before, during, and after each infusion and what lessons she's learned over the past decade.
“Having RA has given me an opportunity to be kinder to myself, love myself unconditionally, and to help so many more people in the RA community find this place of peace."
Here's how patient advocate Zoe Rothblatt and the chronic illness community feel social media has helped their health, and what a recent article got wrong about people who post about their disease.
By CreakyStaff
In honor of Disability Pride Month, we talked to our patient community about what they wish others knew about being disabled.
By CreakyStaff
We're raising awareness with our LGBTQ+ patient community on the unique challenges they face as people at the intersection of multiple identities.
By Angie Ebba
“As June comes to a close, I may be putting away my rainbow romper and unicorn headband, but I’ll be unapologetically stepping out with my cane and posting about my disability on social media.”
Andy Pendergrass believes in leading by example. And he’s showing sons Cal, 5, and Freddy, 1, that when life throws you a curveball you can still hit it out of the park.
By Rachel Ellis
“I think because this kind of disability is, in most part, an invisible one, people think we should just plow through,” says Will Taylor, who lives with osteoarthritis and psoriatic arthritis. “I don't think there's much public understanding of what it does to the body.”
Raising awareness, connecting with peers, promoting research, staying motivated, and setting boundaries are just a few of the many reasons why patient advocate Eileen Davidson shares her health struggles and wins on social media.
By Rachel Ellis
“A lot of people with physical disabilities don't understand chronic illness, and vice versa,” says rheumatoid arthritis and lupus patient Melanie Rivera Waldman, who lives with limb difference. “But I have the perspective of both.”
Patient advocate Zoe Rothblatt gets real about chronic pain — and how to take the power back when pain-free days mess with your emotions.
By CreakyStaff
These Global Healthy Living Foundation members — who live with a wide range of chronic illnesses — are sharing their stories and speaking up for fellow patients in marginalized communities who too often feel voiceless.
By Rachel Ellis
“Disabled people aren’t often seen as the decision makers in their care, let alone younger disabled people,” says Derek Schmitz, who has cerebral palsy and spondyloarthritis. “But I’m the one living the experience in my body.”
By Jae Walker
Winter is hard — even downright cruel — on Jennifer Walker’s body, mind, and spirit. Here’s how they deal with the darkness.
By Rachel Ellis
“You have to learn a brand-new way of being in the world after your diagnosis,” says Kevin Thomas, who has ankylosing spondylitis. “And once you find others going through it, too, you realize it's just not you trying to accept a new reality.”
“I’ve heard friends say passing off a hangover gets harder the older they get, but they haven’t had to pass off a hangover while living with a chronic illness,” says Eileen Davidson, who has rheumatoid arthritis and osteoarthritis.
In our Arthritis Awareness Month campaign that sought to raise awareness of the challenges of living with invisible illnesses, community members shared what others do to make them — and their illness — more visible. Many said they feel less invisible when they are listened to and included.
“While my rheumatoid arthritis (RA) was responsible for a lot of my sleep problems, at the same time, getting poor sleep was also making my arthritis worse,” says Eileen Davidson, who has RA and osteoarthritis.
In a recent episode of the podcast ‘Talking Head Pain,’ Global Healthy Living Foundation Co-founder Seth Ginsberg and his wife Cara Zelas discussed the impact migraine has had on their marriage. Here, Seth continues the conversation and shares what he’s learned about being a caregiver to someone with a chronic illness.
“Being this in tune with my body has actually made sex more comfortable and enjoyable for me compared to when I had no clue what was actually going on with my body,” says Eileen Davidson, a woman living with rheumatoid arthritis.
In our Arthritis Awareness Month campaign that sought to raise awareness of the challenges of living with invisible illnesses, community members shared how they get others to understand a condition that can’t always be seen. Many said that they have given up on trying to explain their invisible illness to people who don’t want to understand.
“It's not a compliment,” CreakyJoints user Rachel M. said of being told she doesn’t look sick. “It's heard as an undermining of the fact that I feel like poop. The reality is that I'm in pain and exhausted every single day.” In our Arthritis Awareness Month campaign that sought to raise awareness of the challenges of living with invisible illnesses, one theme emerged over and over. Telling people with arthritis and other chronic illness that they don’t look sick invalidates and undermines how they feel.
“Moving with rheumatoid arthritis was as challenging as I expected it to be, but it was also rewarding in ways I didn’t expect,” says rheumatoid arthritis patient Eileen Davidson.
Eileen Davidson used to have a flair for the dramatic when it came to hair, clothes, makeup, and clubbing. Now her definition of flair — or rather, flare — is much different.
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