The Value of Patient Communities

The Value of Patient Communities

When I was diagnosed with cancer, I thought “This is all on me. I’m going to get through this on my own.” I didn’t want to burden anyone with my new “problem.” I had my family, of course, but even then, I didn’t wear them down with upcoming medical bills. In my mind cancer equaled a solo journey.

It wasn’t until late into my journey as a cancer patient that I found that I needed others. I needed a community of people like me who were going through the same thing I was. A group of people that I could call a “second family.” Searching for “thyroid cancer groups” on Google led me to Thyca, Inc., an organization specifically for thyroid cancer patients. They offer face-to-face support groups in my area, which I still try to attend.  In these groups, we’re able to freely share what we’re going through as a cancer patient and provide support to one another. Additionally, I found a group on Facebook that was specific for my type of thyroid cancer which provided even greater benefit, as we know that all cancers are different. In this group, we also share our experiences, but in a virtual format. In this way, more patients are able to come together to create a larger network of people with whom to connect and learn from.

Finding these online and in-person support groups provided me an outlet for which I could share my ups and downs and often find them reciprocated. Additionally, I learned information about what to look for in and how to communicate with an endocrinologist, a special type of physician for thyroid cancer patients. I learned about the different blood work levels to monitor in a language that made sense to me and not the scientific jargon I usually heard from my doctor. Most importantly, I found people who “get me.”

However, I was hesitant to share everything, even little bits and pieces of what I was going through and what I was feeling. Sharing data online can be scary, especially health data. That’s why it’s important to find websites and organizations that have confidentially and/or privacy policies in place and monitor people’s behavior. Look at what other patients are saying. How revealing are they being? Are they displaying appropriate behaviors (ex. helpful vs malicious)? If you feel uncomfortable, report it!

“Finding your tribe” is something I wish I had done earlier in my journey. I wish my doctors would’ve told me about support groups. As I’ve learned, a chronic illness is not something you go through alone, much less cancer. Having a group, whether it be large or small, face-to-face or virtual, can provide immense benefit for both emotional and mental health.If you’re struggling through your health journey alone and feel like you need someone to talk to or even provide a listening ear, find your community. Find “your” people. A simple Google search helped me, but there are a number of organizations to look out for. Here are some of my favorites I found as a cancer patient:

– Inspire (chronic conditions, including cancers)

Our Odyssey (rare diseases, including cancers)

Facebook groups (general and specific to the type of cancer)

Twitter (find groups using hashtags)

American Cancer Society (search for support groups)

Stupid Cancer (virtual and in-person support groups)

– Cancer Support Community (all cancers) (all cancers)

Don’t miss the Best Practices for Participating in a Patient Community Empowered #patientchat Friday 4/3 at 1pm ET | 10am PT with Carly!