Seeing Yourself in Others

A few days ago, I had the wonderful opportunity to be in a Zoom meeting with a bunch of other patients with Follicular Lymphoma. There were about 15 people on the call, and my math might be off, but I think we came from and/or lived in 7 different countries. It's never easy to find a time where people from different parts of the world can conveniently meet, but I'm very glad the meeting happened and very grateful that I was invited.

The meeting was set up by the Follicular Lymphoma Foundation, and the participants were Super Supporters, a group of patients who provide insights and ideas for the foundation. 

I won't get into details of the meeting or who was there, but I do want to share how I felt afterwards.

If you've never had the opportunity to meet with a group of FL patients, or cancer patients or survivors in general, I hope you'll seek out such an opportunity. There's something really wonderful about seeing yourself in others, and hearing their stories. Everyone with cancer has a unique story. And that's especially true for a cancer like Follicular Lymphoma, which is known to be heterogeneous, taking many different forms. Everyone on the Zoom call had a different experience. 

But at the same time, there was so much that we had in common. We share the same fears, sometimes the same guilt. Many of us were surprised by our diagnosis. Many of have dealt with the same short-term and long-term side effects. For all our differences, we have a lot in common.

And it's a strange experience to hear your story mirrored in someone else's.

I remember years ago being part of a face-to-face group of cancer patients and survivors giving some feedback on a cancer-related website. Our meeting started with everyone introducing themselves. The introductions went on for a while, with people sharing lots of details about their stories. I remember one patient in particular who had been diagnosed with a particular cancer (not FL), but the diagnosis took several years to finally settle on cancer. This person was told it was a type of cancer, then told it was a different kind of cancer (a less worrisome type), then told it was a third different type (a more worrisome type), and then told that it wasn't cancer after all, but a different condition, and then finally the cancer diagnosis that proved to be correct.

As they told the story, everyone in the room went on this roller coast ride with them. You could see it in everyone's faces, including mine -- hopeful that the diagnosis was the right one, then frustration and sadness that it wasn't, then anger that they had been given wrong information, and then hopefulness again.

I can't describe accurately what it felt like to hear this person's story. Despite all of those negative emotions -- frustration and sadness and anger -- when they finished, I felt this overwhelming positivity. It wasn't just relief that they finally got an accurate diagnosis. It was a feeling of connection -- of knowing that, even though my story was different, we were connected in ways that other people just couldn't be connected. It's not the same to hear a doctor tell someone else they have cancer as it is to hear it said about yourself.

I felt  similar way after the FLF meeting. Everyone;s story was different, and while we didn't share our stories in the introductions, those details came out as we talked over the course of 90 minutes. Cancer can be isolating sometimes. Connection is a great thing.

At the same time, I was keenly aware of the differences. And that was a great thing, too. I've been living with Follicular Lymphoma for over 17 years. I had a very particular experience when I was diagnosed, watching and waiting for 2 years. I was relatively young -- 40 years old. My kids were 6, 8, and 10 years old. I had 6 rounds of Rituxan as treatment. I've dealt with long-term side effects related to my heart and my skin. I'm a Follicular Lymphoma patient advocate, blogger, and freelance writer. I have thought about FL literally every single day since I was diagnosed. What's more, I actively seek out information about FL -- every day. I don't push it out of my head. I pull it in.

And that's all very different from most other patients' experiences. And hearing those differences reminded me of how important it is for me to recognize, think about, and understand those differences in experience, especially if I am going to call myself a Follicular Lymphoma patient advocate. If my goal is to help lots of people, I need to remember that not everyone thinks like me, or acts like me, or wants the same things.

So, as I said near the beginning of this post -- if you've never had the opportunity to meet with a group of FL patients, or cancer patients or survivors in general, I hope you'll seek out such an opportunity.If feels good to share your story, and it feels good to see yourself in others' stories. Maybe that means finding a face-to-face support group at your cancer center or somewhere else near you. Maybe it means finding an online group, as I did when I was first diagnosed. There are some good ones online, including the Facebook groups Living with Follicular Lymphoma, Linfoma Folicular Grupo, and Young Adults Living with Follicular Lymphoma. The new FL Community Podcast is explicitly about sharing stories, and is going to be an excellent resource for a lot of people.

And if you want to share your own story, I recommend going to the FLF website and providing some details. You can read others' stories, too, and maybe see yourself in others. And with a little luck, you'll capture that same feeling of being connected that I have been able to feel. 

As much as I wish it wasn't true for any of us, we're all kind of in this together. We can help each other out even in the smallest of ways.

Take care of yourselves.