What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our October edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.
Do your friends and family give you the support you need as a patient? Or have you found that – despite their best efforts in some cases – they just don’t understand what you’re going through? We’ve noticed that this tends to be a hot topic in our forum, drawing many members to make their first post.
Here’s what some had to say:
- “I was called a hypochondriac, a faker, a selfish jealous person, and the downfall of my family. I was astounded.” – Patient with fibromyalgia
- “My friends know I have it and they are supportive, but I can tell some get uncomfortable talking about it.” – Patient with multiple sclerosis (MS)
- “My family doesn’t really un derstand and has a tough it out or ‘pull yourself up by your bootstraps’ mentality.” – Patient with major depressive disorder
- “I have lost two friends of over 10 years. They were sick of me being late, canceling plans, or saying I wasn’t up to doing things.” – Patient with rheumatoid arthritis (RA)
What about you? Do you believe anyone who’s not also living with the same conditions can truly “get it”? Share your stories in this ongoing forum discussion, a place where (as one member puts it) “you can find people who care because they know.”
JOIN THE CONVERSATION
What’s happening in the forum? Check out some of the recent buzzworthy threads below. Then jump in with your own questions and answers.
- Coping with migraines (Neurological and Brain Room)
- Average income on disability? (PatientsLikeMe Room)
- Wrestling with suicidal thoughts (Epilepsy Room)
- Known risk factors for developing ALS (ALS Room)
- What are your creative outlets? (Parkinson’s Room)
- Informing employers of your condition (HIV Room)
Need help using the site or want to learn more about recent changes? Visit the Technical Help Using PatientsLikeMe Room.
THIS MONTH’S SITE IMPROVEMENTS
Thanks for your continued feedback about improving the site. Here are our top functionality enhancements for October.
In August, we changed the way we capture attributions – or the links between any two health concepts, such as treatments and side effects. As we watched you use these new features, we learned some valuable lessons about what makes sense to you from a user perspective and what is missing from a research perspective. As a result, we’ve recently improved how we capture and reflect the data you’re entering so it’s done in the most meaningful way. See the full Release Notes for details on these recent changes to how you capture and share symptoms, side effects, “causes” and more.