Receiving a difficult diagnosis can leave you with a mix of complex emotions and saying it out loud to others makes it feel even more real. Sharing your illness with friends, family members, and acquaintances can be as challenging as getting the news yourself in the first place. Therefore, it’s essential to learn how to… Continue reading How to Tell Friends and Family About a Difficult Diagnosis
Category: Patient Experiences
Lupus Advocate and PatientsLikeMe Team of Advisors Member, Juana Mata
“Living with lupus [a systemic autoimmune disease] is difficult. I thrive by staying positive,” says 2019 Team of Advisors member, Juana (@Juanymata). Advocating on behalf of lupus patients like herself is one key way Juana stays positive. Off and Running Only months after being diagnosed with rheumatoid arthritis and systemic lupus erythematosus, Juana Mata and her two sisters formed a team to… Continue reading Lupus Advocate and PatientsLikeMe Team of Advisors Member, Juana Mata
ASMR – The Phenomenon Everyone’s Whispering About
Chills. Goosebumps. Tingles. “Autonomic sensory meridian response” or ASMR is described as a pleasurable wave of calm that comes to some people during exposure to gentle actions and/or sounds: think whispering, tapping fingernails or turning pages. These ordinary audio and visual triggers can inspire a deeply soothing effect on many people – making ASMR potentially… Continue reading ASMR – The Phenomenon Everyone’s Whispering About
“Smart” Gear for Cold Hands Due to Raynaud’s Disease?
Member Julia (mjguimaraes), a product designer in Montreal who’s living with Raynaud’s disease and multiple autoimmune conditions, is creating hand-warmers and other smart gear intended to help patients. She even involved fellow PatientsLikeMe members in shaping her first product. What’s in the works? Check it out! Helping (Cold) Hands Julia is originally from Brazil and began to… Continue reading “Smart” Gear for Cold Hands Due to Raynaud’s Disease?
Keto + other diet trends: Healthy or hype?
Keto. Carnivore. Fasting. What should you know about these diet buzzwords and the potential benefits or risks, especially when you’re living with an existing or chronic health condition? Take a peek (and always talk with your doctor before making big dietary changes). 3 Hot Diet Trends In 2019 According to Google Trends data (accessed in early 2019),… Continue reading Keto + other diet trends: Healthy or hype?
Supplement safety smarts
It’s easy to see the temptation of taking dietary supplements. Getting vitamins, minerals and herbs or other “health foods” in pill form sounds simple. And some of the products’ claims — “Live longer!” or “Have more energy!” — may seem enticing. But even though most supplements don’t require a prescription, it’s best to check with… Continue reading Supplement safety smarts
Gift Guide: Gadgets for People with Health Conditions
Who needs another scarf or coffee mug? With the holiday shopping season upon us, PatientsLikeMe members are putting together a list of handy products and tools that can actually help people living with pain, fatigue, and other symptoms of chronic illness or aspects of aging. Check out the list below, for starters, and then join PatientsLikeMe or log… Continue reading Gift Guide: Gadgets for People with Health Conditions
Lupus Diagnosis and Lupus Self Test: Member Hetlena’s Pointers For Her Old (Newbie with SLE) Self
What would someone who has lived with lupus (SLE) for decades tell her younger, newly diagnosed self? PatientsLikeMe member Hetlena (@TheLupusLiar), who was diagnosed with lupus in 1993, recently answered that question for us in the following personal essay reflecting on what she’s learned through the years… Tips For A Newly Diagnosed SLE Patient “This… Continue reading Lupus Diagnosis and Lupus Self Test: Member Hetlena’s Pointers For Her Old (Newbie with SLE) Self
“In Claire fashion”: Claire Wineland + organ donation with a health condition
Claire Wineland — an author, inspirational speaker and social media star with cystic fibrosis — died last month at age 21 following a lung transplant. “In Claire fashion, she is an organ donor,” her family shared, noting that her kidneys helped save two people. Learn more about Claire and organ donation with a health condition.… Continue reading “In Claire fashion”: Claire Wineland + organ donation with a health condition
The Pain Scale 1 to 10 falls short
We’re exploring how pain is subjective, and expressing it using the classic 1-to-10 or “smiley face” scale can be tricky. What are the shortcomings of these scales? And what can help you communicate better with your doctor? Pain scale problems NPR recently reported about the trouble with the most common pain scales: Adam Rosette, a 33-year-old… Continue reading The Pain Scale 1 to 10 falls short