MyViewPoints: Sharing information, connecting communities

Adrienne found online communities helpful when recovering from Lyme disease

About two years ago I became very sick. After dealing with illness for a number of months I was finally diagnosed with Lyme disease. Suddenly I had an explanation for all the symptoms I was feeling: aches and pains, headaches, blurred vision, dizziness, memory loss, upset stomachs, anxiety, depression.

I was lucky to find a great local doctor and have a supportive network of friends and family to lean on. I took my prescribed antibiotics and felt better. I took time off from work and gave my body time to heal. Both played into my eventual recovery, as did the support network I found online. By connecting with an online Lyme disease community I learned what hurdles other people like me were facing, and how they beat (or at least coped with) those hurdles. I asked questions like what homeopathic remedies worked best for them? How did they alleviate anxiety? How were they able to ease the upset stomachaches caused by their antibiotics?

I was helping myself get better, and after a while started sharing my own remedies and coping mechanisms. The back and forth developed into strong, supportive relationships that were very important to me. They didn’t take the place of a trip to the doctor’s office or real life bonds I had, but it was so helpful to have access to people who understood my ups and downs, didn’t mind my occasional venting and were so eager to share information.

But this type of interaction isn’t exclusive to people with Lyme disease. A recent report by the Pew Internet and American Life Project shows many Internet users seek out exactly this type of health related interactions:

  • 34 percent of Internet users have read someone else’s commentary or experience about health or medical issues on an online news group, website or blog
  • 24 percent have read online reviews of particular drugs or medical treatments
  • 18 percent have gone online to find others who might have health concerns similar to theirs

To encourage these types of relationships, we’ve created MyViewPoints, a user-generated tool that lets parents, children and clinicians share their tried-and-true methods for coping with a particular condition. With help from Genuine Interactive we’ve created a place where people in a similar situation can share, teach and learn at their own pace. Day or night, MyViewPoints is here for people dealing with various medical conditions to weigh in on what works for them—and see what has worked for others— before trying it themselves.

Please visit the MyViewPoints website and share your experience: what worked, what didn’t work, what would you do differently next time? Even if you don’t join the conversation you still can view results and read comments.

As with all user-generated content, we can’t guarantee the remedies mentioned will work for you, but it will provide you with links to the most up-to-date, Boston Children’s content around a particular condition or topic. Interested in learning more how Boston Children’s treats a specific condition? We will provide you with specific program information including how to request an appointment online or contact us by phone. Want to hear what our doctors think of the survey results? We will share these outcomes with our clinicians and allow them the chance to provide feedback through a blog, video or live webcast.

Most importantly, we hope MyViewPoints will inspire you to share with your friends, family, support network and community. Remember, conventional wisdom is only as strong as those who contribute to it. The more honest responses you can provide, the better your chances of helping someone like you, as well as yourself.

Please visit MyViewPoints page and chime in our first topic: “How do you treat seasonal allergies?”

Share your own experiences and weigh in on what topic we should address next.

*MyViewPoints is an educational site, offered as generally suggestive information among individuals with similar medical issues. MyViewPoints is in no way a substitute for the independent decision-making and judgment by a qualified health care professional. Your use of MyViewPoints does not create a physician/patient relationship, or hospital/patient relationship, among you, Children’s Hospital or any Children’s Hospital physicians, including the creators of the MyViewPoints. You should always consult a qualified clinician concerning a specific patient’s care and prognosis. Children’s Hospital Boston does not assume any legal liability or responsibility for the accuracy, completeness or usefulness of any information on MyViewPoints. CHILDREN’S HOSPITAL MAKES NO WARRANTY, EXPRESS OR IMPLIED, CONCERNING ITS FITNESS FOR A PARTICULAR PURPOSE, OR RELIABILITY, OR ANY OTHER WARRANTY, AND TO THE EXTENT ALLOWED BY LAW SUCH WARRANTIES ARE EXPRESSLY DISCLAIMED.” By participating in MyViewPoints, you agree to the statements in this paragraph.