advertisement-vertical Download Proto magazine app
Social Icons

A Sense of Community

Patients on medical networking sites share symptoms and support. Here, they also share their stories.

FALL 2009
icon-printprint
share: digg.com del.icio.us facebook.com

For nearly every disease, there exists an online community where patients can trade information about symptoms and treatments. Though researchers have only recently begun to mine these conversations for clues about side effects and possible new treatments, the virtual communities have offered priceless support since their inception, with users expressing very real concern for others with the same disease. Here, nine users of the social networking site Inspire.com, which covers a broad spectrum of illnesses, explain what such a forum has meant to them.

 

social networking janet burts

I joined Inspire because I was searching for hope. When I was diagnosed with lung cancer in October 2008, I needed to know that there were survivors of the same type of cancer. I needed to hear their voices even if it was through their typewritten words. No one on Inspire thinks your questions are idiotic—they know your fears because they have been there. You can fight your best fight with your Inspire family beside you.

Janet Burts // 49, Okanogan, Wash.

social networking sharon burrell

My lung cancer diagnosis came as a real shock because I never knew that people who didn’t smoke could get lung cancer. When I came across the Lung Cancer Alliance’s online community in 2005 and, later, Inspire, it was very helpful to find out that there were actually people who had survived a lung cancer diagnosis and to learn about different treatment options.

Over the years I have done very well, so my need for information and support has decreased, but I stay on Inspire to help other people who are experiencing what I went through.

Sharon Burrell // 51, Stow, Mass.

social networking kimberly marcus

I came across Inspire while I was searching online for information about sarcoidosis, an autoimmune disease I discovered I had in May 2009. I have found valuable and painstakingly researched information from the people on this site. There are people who are much sicker than I am and there are people who are much healthier than I am, but we’re all in the same sarcoidosis boat. It is freeing to have a community that understands how I feel and is supportive and nonjudgmental.

Kimberly Marcus // 45, Tarrytown, N.Y.

social networking linnea duff

I’ve been a lung cancer patient at the MGH for 4½ years. I’ve been enrolled in a clinical trial for the past year, and I’ve been a regular participant in the Lung Cancer Alliance online support group. The group has given me the opportunity to connect and share information with others in similar situations. I have also been able to “talk” to other clinical trial patients as far away as New Zealand and Japan. We’ve been useful to each other in terms of support, and I’ve been able to provide my oncologist with anecdotal data.

Linnea Duff // 49, Meredith, N.H.

social networking melissa bales

Until 2001 I was working at my dream job as a fitness professional. I’d already had cancer but was still able to do all the things I loved to do. Then I became sicker, and it wasn’t related to the cancer. I was diagnosed with sarcoidosis. My whole life changed from one of constant activity to one of being ill.

My husband and I have moved three times since all this happened, and it’s very difficult to make friends and become involved in activities while I’m sick. This is why I looked to Inspire for both information and friendship. These people know exactly what I’m going through.

Melissa Bales // 38, Riverview, Fla.

social networking colleen hofmeister

When I was diagnosed with metastatic breast cancer 2½ years ago, I began a quest to learn about survivors, because that’s what I need to be for a long, long time. I joined a local support group but it was a downer, so I sought companionship online. I’ve found some of the closest friends I’ve ever had. They all know what it’s like to walk in my flip-flops because they all have late-stage breast cancer. Inspire helped me keep my sanity when the rest of the world seemed stark raving mad.

Colleen Hofmeister // 46, Sayville, N.Y.

social networking joe stuckert

This year alone, I’ve had a thoracotomy and lung resection to treat lung cancer, and Gamma Knife surgery and chemotherapy to treat two brain tumors. Now I’m in the middle of seven weeks of daily radiation with weekly chemo. Inspire is a place I visit every day. I’ve learned so much from other patients about what to expect. I never imagined I could go through this with so much faith and such a positive attitude.

Joseph Stuckert // 52, New Castle, Pa.

social networking christina falise

In 2003 I was single and unemployed, had no health insurance and had just moved to a new state. And I learned I had metastatic breast cancer. I needed a lot of help.

Because there’s very little support out there for people with metastatic breast cancer (in fact, we’re often specifically excluded from some online breast cancer communities), it took me three years to find Inspire’s group. Inspire is my primary support site. We compare side effects; bring new options to one another’s attention; and discuss nutrition, family, money, fear of death and coping strategies. We can share experiences with others who know what it’s all about and who aren’t scared or overwhelmed by our situations.

Christina Falise // 37, Sherman, Conn.

social networking christine feterowski

Shock cannot even describe what I felt when, in August 2008, I was diagnosed with a rare type of invasive bladder cancer. I am a registered nurse, and I have worked in research at Massachusetts General Hospital, but nothing prepared me for having cancer. I’m thankful that the urologist sent me a pamphlet about a lecture sponsored by the Bladder Cancer Advocacy Network.

When your doctor tells you your bladder needs to be removed, there are three types of urinary diversion that can be performed. I had no idea which type would be best for me; I was afraid and confused. The BCAN online network allowed me to communicate with patients who had undergone the three different surgeries. They provided me with answers to the questions I was embarrassed to ask my doctor and helped me immensely in making a decision. I am now nine months post-bladder-removal, and I volunteer as a group leader on the BCAN’s online network.

Christine Feterowski // 49, East Bridgewater, Mass.

Stat-arrow-green

Between the Lines

social networking

Patients on networking sites discuss their illnesses and treatments. Can pattern-recognition software pull insights from the noise?

Protomag on Facebook Protomag on Twitter