2 posts tagged “social connection”

The Social and Emotional Choices You Make Every Day as a Patient

Posted February 17th, 2011 by

The Many Faces of PatientsLikeMe

As David Williams discussed in his blog on Monday, we all have to make choices. And for patients like you living with serious medical conditions, there are obvious treatment and career decisions that you have to make—finding the right doctor, deciding which treatment options to try and determining if it’s still possible for you to work in your current profession or if changing jobs or applying for disability is the next step. Like David’s mother, who has battled cancer three times, many of you report that your condition has significantly altered your career choices.

This got me thinking about the tradeoffs that patients like you have to make in order to take care of your health and conserve energy. Beyond your career path, a number of you have been sharing the ways your condition impacts day-to-day decisions, such as making plans with friends. For many of you, this is no longer an easy thing to do, and it can have emotional repercussions. Will your friends understand if you have to cancel? Will you feel guilty? Overall, how do you balance your desire to stay active and social with the need for flexibility due to unpredictable symptoms?

You’re not alone if you struggle with these lifestyle tradeoffs. Fortunately, there is much to learn from the collective experiences of patients like you. You don’t just talk about your challenges at PatientsLikeMe. You also share your inventive solutions to the daily dilemmas you face. Here are just a few of them:

A New Holiday Tradition
“My family is used to me hosting family gatherings, large meals, etc.  This is a difficult issue for me these days…and yet it seems family members don’t realize how hard it is.  I just come right out with it and say something like:  “Sure wish I could still host Thanksgiving like I used to.”  Actually, last year we had dinner at home, but it was catered by our local grocery store.  They cooked most everything and even delivered it piping hot. It was great!”

The At-Home Get Together
If I’m home I feel much better than if I put myself out there where who knows what may happen. At home I have more energy, and things are easier for me. My best friend may stop over unexpectedly. We’ll talk for hours and I have no problems and love the visit. That same friend will call and say a few people are meeting at a restaurant. Nine times out of 10 I’ll cancel. I may tell myself I want to go, but there’s the ‘unknown’ part I may not want to chance.”

Telling People Right Away
“You can change attitudes by talking to people.  If they decide not to be your friend any longer, it’s their loss, and they really couldn’t have been great friends to begin with.  I had a really hard time talking about [my condition] to people at first  and lost some ‘friends’ when I started talking about it.  But now I tell anyone who will listen and have actually gained friends because I have stood up for myself and would not let my disability define me.”

Backyard Activities, Shorter Trips
“I realize I have limited energy and that activity can worsen my symptoms so I often pick and choose what it is that I’m going to do. I’ve traded in activities like hiking and playing softball and martial arts for backyard or casual bird-watching and I do a little photography but the weight of my camera has become an issue since I don’t drive. I used to shop all day by bus and public transit but now I make shorter trips and sit down a lot or plan a day when I just go to the grocery store and then rest.”

Find the Right Balance for You
“I went on disability about six months ago. I wasn’t performing well at work and it made me feel worthless and stressed out. I just needed to drop some stressors.  Now I go to school. I took two classes and got A’s in both.  This coming semester, I’m taking three classes.  I’m slowly increasing the things I’m responsible for, as I have also found that when I’m doing nothing I get depressed.  It’s just a balance you have to figure out for yourself.

As these stories reveal, patients like you must develop a personalized approach to socializing, activities and family gatherings. At the core for everyone, though, is a series of choices about how you allocate your energy. Did you notice that the condition for each patient was not mentioned, by the way? That was deliberate. The point is that every patient, no matter what condition, faces social and emotional choices every day. What works for one patient may not work for another, but there are universal takeaways whenever patients like you connect with one another.


PatientsLikeMe member kbrigham


One for All: The Connected Community of PatientsLikeMe

Posted December 7th, 2010 by

Comments between Epilepsy patients on PatientsLikeMe

PatientsLikeMe is dedicated to building a platform for the open sharing of personal health data.  So far, our community of patients have shared over 600,000 outcome surveys, 300,000 treatment histories, and 2.3 million symptom reports.   We believe this enormous collection of health data will dramatically improve how patients manage their conditions.

But there are more benefits to joining a community of patients like those on PatientsLikeMe than just sharing data: the social support from interacting with other patients has a real effect on improving patient outcomes.  In a recent study published in the Journal for Medical Internet Research (JMIR), our research team found that nearly half of survey respondents (n = 559, 42%) agreed that the site had helped them find another patient who had helped them understand what it was like to take a specific treatment for their condition.  Furthermore, the survey shows that those patients on PatientsLikeMe who make close relationships with other members receive significantly more benefits from those who do not.

So it is worth taking a moment to look at just how extensive the social connections are on PatientsLikeMe, and how many patients have reached out to other patients and helped improve their lives.

There are many ways to connect with other patients on PatientsLikeMe, ranging from communal conversation in our forums to direct one-on-one personal messages.  While some of this dialogue is centered around sharing of health information and experiences, a part of it is purely meant as conversational discussion about everyday life.  All of these interactions are important, because they help tie a community together.  Here’s a glance at some of the ways you’ve connected:

Forum

  • You’ve created 1.2 million posts composed of 94 million words about 86,048 topics
  • 21,865 of you have created at least one post, and 54,839 of you have viewed at least one post
  • You’ve marked posts as “helpful” 1.2 million times

Personal Messages

  • 25,062 of you have sent a total of 751,668 messages
  • 723 of you have individually sent over 100 messages

Patient Profile Pages

  • You’ve viewed our 80,000 patient profile pages over 15 million times
  • 11,874 of you have left over 156,196 comments on other members’ profile pages

(Note: numbers are across all communities.)

While these numbers show just how much sharing has been going on, the following graph illustrates what the connections are like between our members.  In this graph, the dots represent patients, and the lines between them connect any two patients who have shared at least 5 personal messages together.  Note how many patients are interconnected.   By reaching out to one another for support, conversation, data sharing and more, you’ve created a universe of dialogue that has never existed amongst patients like you.

Personal Messages between Patients on PatientsLikeMe

Click for full-sized version. A graph showing personal messages made between some of the patients on PatientsLikeMe. The dots represent patients, and a line represents at least 5 personal messages between them.

Moreover, what you’re sharing with each other through these various connections represents the largest data set of its kind linking conversations to outcomes and overall health experience. This week on the blog, we’ll delve into some of these connections that have been spurred by some of our members.  However, we also want to recognize that even the silent contributors (those connecting behind the scenes or outside of the forum spotlight) are as much to thank for this open network.  All for one and one for all.

(About the title image. This graph shows all comments made between Epilepsy patients on PatientsLikeMe. The dots represent patients, and the lines between them represent at least one comment made. Note the highly connected network of patients in the center. Click for full-sized image.)

PatientsLikeMe member jcole