Before you were diagnosed with your condition, how long did you live in “limbo” with your symptoms and what was that like? Living with the unknown is a common part of the patient experience — PatientsLikeMe data shows that people with a wide range of health conditions live with their symptoms for several months or… Continue reading Pre-diagnosis limbo: “I knew something was wrong”
Tag: symptoms
April is Sjogren’s Awareness Month
It’s April, which means it’s also Sjogren’s Awareness Month. Why do we need awareness? Around four million Americans have Sjogren’s, but less than half of those patients are diagnosed. Sjogren’s is often referred to as an invisible disease and despite patients’ severe discomfort, many don’t often see it as debilitating. This can be isolating for… Continue reading April is Sjogren’s Awareness Month
Spoons and forks – not just for summer picnics
There are a ton of activities to do during the “lazy, hazy, crazy days of summer.” And whether you’re living with a chronic condition or not, it’s good to learn how to manage your energy. Christine Miserandino, who lives with lupus, created her “Spoon Theory” as a way to think about how much energy we… Continue reading Spoons and forks – not just for summer picnics
Visualizing insomnia
Jenna Martin is a photographer living with insomnia, and her sleeplessness is the inspiration behind much of her work. Much like the Seeing [MS] campaign, she tries to visualize her experiences through unique photographs that capture what it feels like to manage bouts of insomnia. Her photographs were recently featured in the Huffington Post, and… Continue reading Visualizing insomnia
Getting to know our 2014 Team of Advisors – Lisa
A few weeks ago, we kicked off the “Getting to know our 2014 Team of Advisors” blog series with Dana, a PatientsLikeMe member from New Jersey that is living with bipolar II. And now, we’d like to introduce you to another member of the team – Lisa. About Lisa (aka lcs) Lisa’s recent work experience… Continue reading Getting to know our 2014 Team of Advisors – Lisa
Seeing [MS]: The invisible symptoms – hot and cold
Dimitri is living with multiple sclerosis (MS), and he experiences dramatic changes in his body temperature every day. These swings can aggravate his other symptoms and leave him feeling suffocated. As he puts it, “a single bead of sweat can bring me to my knees.” You are now seeing hot and cold Photographed by… Continue reading Seeing [MS]: The invisible symptoms – hot and cold
Seeing [MS]: The invisible symptoms – pain
“I’m burnt alive every day.” That’s how Stephen Papadopoulos, an Australian living with multiple sclerosis (MS), describes the level of pain he experiences on a daily basis. Pain is the second of nine symptoms portrayed in the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] awareness campaign, and Stephen details his experience in the video… Continue reading Seeing [MS]: The invisible symptoms – pain
Seeing [MS]: The invisible symptoms – blurred vision
Hidden – invisible – unnoticed. That’s what symptoms for many living MS are like. So how do you explain them to people who don’t understand? The Multiple Sclerosis Society of Australia (MSA) decided to stop just talking about them and start showing what it’s like to live with MS. Their project is called Seeing [MS]… Continue reading Seeing [MS]: The invisible symptoms – blurred vision
A Traumatic Brain Injury Can Happen to Anyone
Did you know that 1.7 million Americans sustain a traumatic brain injury each year? Or that the term includes any type of blow, bump or jolt to the head or penetrating head injury that disrupts normal brain function? March is Brain Injury Awareness Month, a time for reinforcing the seriousness of head injuries, given that… Continue reading A Traumatic Brain Injury Can Happen to Anyone
Life with Bipolar I Disorder: What We’ve Learned
Yesterday, our interview with bipolar blogger Andrea gave you a glimpse into what it’s like to live with bipolar I disorder. Today we take a deeper look into this mental health condition using the data and experiences shared by our 1,237 bipolar I members. First off, however, you may have heard of something called bipolar… Continue reading Life with Bipolar I Disorder: What We’ve Learned