“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.
In honor of Disability Pride Month, we talked to our patient community about what they wish others knew about being disabled.
We're raising awareness with our LGBTQ+ patient community on the unique challenges they face as people at the intersection of multiple identities.
“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.
“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.
“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.
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.
“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.”
Winter is hard — even downright cruel — on Jennifer Walker’s body, mind, and spirit. Here’s how they deal with the darkness.
“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.