What Do You Do When It's 'Just' Benign? : Shots - Health News NPR's Sue Goodwin didn't "get" social media until she got a benign brain tumor diagnosis. Then she found a community out there.

What Do You Do When It's 'Just' Benign?

Non-malignant tumors are scary, too /istockphoto.com hide caption

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Until recently, I haven't been a big user of social media.

Like many fifty somethings, I've been astounded by the amount of time some of my younger colleagues spend on their Facebook accounts. For me, just keeping up with email can be overwhelming, much less a phone call to the parents and the BFFs at least once a week.

And then, about a year ago, I started smelling burnt rubber. It's called an olfactory hallucination, and is an indicator that something's not right in your brain. After a biopsy and a surgery, I was diagnosed with a benign brain tumor two months ago.

Now, relatively speaking, benign is a good thing. Far better than the alternative. But, it turns out, benign brain tumors can still grow. Given enough time, some can affect major brain function and even become malignant. I was scared.

It can be hard to find people who understand the anxiety of this in-between experience. So one day, I just started Googling "people with benign brain tumors." And up popped a website called "It's Just Benign."

It's a website just for people with benign brain tumors. I was home. Here I've found forums on topics ranging from how having a benign tumor can affect one's career, to how to talk with doctors, to the anxiety that comes with the endless chain of MRIs required every four to six months to monitor any possible growth.

I've received comfort from connecting with people who really get it. Realizing that other people in the same situation share my fears somehow makes it less frightening. There's information on different side effects.

I actually started my own forum on "Facial Numbness." As of today, it had eight responses. Not bad in this small universe.

And there's even some tumor humor: What does PMS stand for? Pre-MRI Syndrome.

Trust me, if you have a benign brain tumor, that is funny.

Research confirms the benefits of social relationships in helping us stay healthy. The ability of "social networks" like this to connect us with far-flung others who share our narrow slice of experience -- whatever it is -- is definitely one advantage of our digital age.

But enough philosophy. I gotta run now and check to see if I have any new messages at It's Just Benign.

Sue Goodwin is Executive Producer of NPR's Talk of the Nation