6 posts tagged “patient stories”

“You’re the only expert of your own life and your own body.” Author Nilofer Merchant shares why she featured PatientsLikeMe in her new book

Posted March 1st, 2018 by

“Onlyness. It’s not a word in the English dictionary, but it should be.” We sat down with author, TED Talk speaker and innovator Nilofer Merchant to talk about her new book The Power of Onlyness, and the role that the PatientsLikeMe story plays in it.

Advocating for “Onlyness”

Nilofer has been championing the idea of “Onlyness” since 2012, when she first introduced the term in her Harvard Business Review-published book 11 Rules for Creating Value in the Social Era. “Onlyness” is the idea that “each of us, every single one of us can add value in the world. Not just the credentialed people, not just the educated people, but each and every single one of us.

“The young, the sick, the neglected – these are not typically the people whose ideas are heard.” She says. “Most often, whether ideas are considered or dismissed is based on who contributes them, and how powerful their sponsors – not the ideas themselves – are.”

Raising a collective voice

Nilofer studied over 300 examples of companies bringing “Onlyness” to the forefront and chose 20 to feature in her book, including PatientsLikeMe.

“PatientsLikeMe is allowing the levers and power systems to benefit the user,” she says. “It’s also letting users actually say ‘here’s my experience with this medicine’ which is an incredibly empowering thing. It lets us compare notes, it lets us not feel alone, we start to ask better questions, we can help each other. So of course it’s going to change the healthcare system because in the past the doctor was the expert, but you’re the only expert of your own life and your own body.”

The book dives into how current systems, from healthcare to business and more, are set up in a way that keep the “experts” in charge. Nilofer, however, explores and reveals the power of what she refers to as a “distributed network” where each of us can gather around a shared purpose, and, by connecting our shared will, become powerful enough to make change happen.

Turning up the volume

In the book, Nilofer shares the story of Ed Sikov, a PatientsLikeMe member living with Parkinson’s disease. Ed visits PatientsLikeMe every day, as he explains, because it can “help the next guy.” By sharing about his treatments, symptoms, side effects and more, he’s joining a powerful collective voice that demands to be heard.

“When I share information, I help others,” says Ed in the book. “It might become clear that one treatment works better for people my age, or that simple shift of when I take a drug changes how I respond. Sharing my own data lets all of us have more insight.”

Harnessing your “Onlyness”

Nilofer says she wrote this book “to try to talk to how much we screen people out based on titles, based on packaging…and we do it to ourselves, too. 61% of us tell ourselves that our own opinions and ideas don’t count. We negate ourselves instead of celebrating that thing only we can bring. We end up seeing ourselves through the boxes that other people see us in.”

So how can you own your “Onlyness”? “It’s about claiming your own life story as relevant,” Nilofer says. “The first step of claiming “Onlyness” is to claim that spot in the world where only you stand. It’s to accept, and celebrate and embrace all of it, whatever it looks like, even if it doesn’t look like conventional thinking. That’s how really new ideas come to bear.”

You can find out more about The Power of Onlyness and Nilofer Merchant on her website, nilofermerchant.com.

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Finding answers from the community: Members helping members

Posted December 12th, 2017 by

Offering words of encouragement. Sharing advice. Just being there to listen. Over the years, we’ve seen countless examples of members supporting each other (did you know there’s more than a 100K posts that mention the word “thank you”?). Check out some of the ways members are stepping up and lending a hand.

Life-changing advice: Get a second opinion

PatientsLikeMe member Theresa (Pipersun) was diagnosed with idiopathic pulmonary fibrosis (IPF) in June 2017. While the diagnosis was correct, her doctors did not believe her condition was as advanced as she suspected. After sharing her concerns in the forum, fellow IPF members stepped in and recommended getting a second opinion. Here’s what happened:

“My pulmonologist was terrible,” she says. “He would not prescribe me oxygen, and would not sign a referral for pulmonary rehabilitation, stating it would do me no good, that if I had COPD he would. We talked about my life expectancy and lung transplant. He thought I had about 5 years, and I stated then how come I feel I am going to die in 3-5 months. But his attitude kick started my drive to find out as much as I could about organ donation regions, stats, etc.”

When her doctor denied an oxygen prescription, Theresa’s fellow members with IPF urged her to seek another opinion. This turned out to be a life-changing, and life-saving decision.

“I decided to get a second and third opinion,” she says. Consultations with two specialist groups in August – and her rapidly declining condition (which landed her on life support in September) – resulted in her receiving a lung transplant.

Making hard decisions

Member Jandaily, who was diagnosed with ALS in 2015, was struggling with her decision about whether or not to get a feeding tube. Worried about being a burden to her husband, she reached out to the ALS community for advice. Her fellow members helped her look at the decision in a new way by sharing their support, advice and personal experience.

Easing fears and finding hope

When member velcro47, was diagnosed with Parkinson’s disease 8 years ago, his doctor told him he would die of old age before dying from his condition. But he started hearing on the news about people dying from Parkinson’s. Confused and worried about what his future could look like, he headed to the forum for answers.

Within hours, a fellow member who’s been living with Parkinson’s for more than 40 years replied with some comforting words from her own experience.

Sharing a helpful guide to coping

Member shumburd, who is living with bipolar, recently shared 5 strategies that help her cope with her symptoms in the mental health forum. One way she “fakes it ’til she makes it” is writing it down:

She hopes that by sharing her 5 tips, she can help others navigate the debilitating mental chaos that can come with an episode. Check out the other strategies here.

Who’s helped you during a tough time? Are you a PatientsLikeMe member? Share about it and say thank you by tagging them in your newsfeed.

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