self-advocate

How Digitization Helps Patients Become Their Own Health Advocates

Patient Experiences / By

The COVID-19 pandemic has changed many aspects of people’s lives, including health care. Many physicians and practices were forced to transition from traditional, in-person doctor’s visits to telehealth appointments. Only under more extreme or necessary circumstances were patients allowed in-person visits, and often times they were forced to go to those visits alone and without […]

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“Breaking up” with a doctor after 14 years — Bernadette’s journey to better care

1 Comment / Conditions, Parkinson's Disease / By

PatientsLikeMe member Bernadette (yellsea), who’s on the 2018 Team of Advisors, has been living with Parkinson’s disease (PD) since 2002. She recently filled us in about switching specialists after more than a decade with the same neurologist, and advocating for herself after enough “red flags” popped up in her interactions with that physician. Out with the

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How to prepare for a doctor’s appointment: 7 tips from member Cathy

4 Comments / Conditions, Multiple Sclerosis, Patient Experiences / By

Ever feel confused or overwhelmed after a doctor’s appointment? Forget to ask important questions or bring up new symptoms? Covering all of your concerns in a 30-minute appointment can be tricky. MS community member Cathy can relate — read on to see how she’s learned to make the most of her appointments and check out her

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Life-changing second opinion stories: “I decided to get a second and third opinion…”

3 Comments / ALS, Bipolar disorder, Conditions, Idiopathic Pulmonary Fibrosis, Multiple Sclerosis, Parkinson's Disease, Patient Experiences, PTSD / By

Stories showing the importance of second opinions have been popping up in the media and on PatientsLikeMe. Check out the recent news headlines, hear a remarkable story of a PatientsLikeMe member who received a life-saving lung transplant after getting a second (and third) opinion, and share your own experience of piecing together your health puzzle.

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How to be your best health advocate

1 Comment / Multiple Sclerosis, Patient Experiences / By

PatientsLikeMe is pleased to announce a new collaboration with Cathy Chester, a wife, mother, advocate and the voice behind her blog, “An Empowered Spirit: Living a Healthy and Vibrant Life After 50.” You might’ve already seen Cathy’s #MoreThan story about her diagnosis and how she’s much more than MS. Here, Cathy dives into the importance of being your

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The Patient Voice: Interview with Mountabora (Mood Conditions Community)

2 Comments / Mental Health, Patient Experiences / By

Yesterday, we announced a new report called The Patient Voice for Inpatient Therapy, which highlights patients’ top tips for having a positive inpatient therapy experience.  Maureen Oakes, community manager for PatientsLikeMe Mood Conditions Community (for people with depression and other mood conditions), recently interviewed 3-star member, Mountabora, about her experiences with hospitalization.   Here’s what she

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