When you get diagnosed with breast cancer, there are probably not too many people in your orbit who can truly understand what you’re going through. As Breast Cancer Awareness month begins, we take a closer look how women are finding support online.
“There are so many things you’re dealing with that you can’t just call anyone and talk about,” says Meredith Kulik, who was just 45 years old when she received a Stage 4 breast cancer (metastasis) diagnosis last year. “So many of us living with cancer want to be strong and positive for everyone else in our lives, but we all need someone, too.”
Kulik had actually been through breast cancer a couple of years earlier and successfully recovered. But this time was different. Her cancer had spread to other areas of her body, and the prognosis was not good.
Support Comes in Many Forms
Kulik’s outlook on her situation and life, in general, is nothing short of inspiring. “The beautiful part of living with a terminal illness is the opportunity to go inside yourself and live outwardly free from hindrances of the past,” Kulik writes on her blog. “What is really left to fear after you've been told you have something growing inside you that can kill you?"
She has challenging days where she’s sad or in pain, of course. She also has days where she’s angry — angry with her doctors for not telling her things and angry with herself for not knowing to ask. But at the end of the day, whether it’s been good or bad, she always has support. All she has to do is log onto Facebook and go to her groups. Kulik is a member of the small but mighty Facebook group, Stage IV Breast Cancer Truths, and it has been an incredible outlet for her.
Lyssa Marie is the administrator of the Breast Cancer Truths group. Her mother started it because she was going through cancer and wanted a support group that could include her family and friends. (Many breast cancer groups on Facebook have strict requirements to join.) Lyssa lost her mom two years ago, but she keeps the group going in her honor.
“It can get a little emotional at times,” she says. “Like we just lost a woman recently that was very active and it was an emotional roller coaster for everyone in the group. But it’s nice knowing the group helps so many and gives them all a safe space.”
Since Kulik has been through both an early breast cancer diagnosis and stage 4, she knows the importance of connecting with people who are at your same level. Yet, she also knows how hard it is to find good support.
The first time she went through breast cancer, she tried an in-person group in her hometown Phoenix, Arizona. Barely any of the women there were in active treatment, and she had to drive far from home just to attend. It wasn’t a great experience overall, and she ended up having much better luck finding other women to talk to online.
When she got her diagnosis this time, Kulik went back online to find a group that would be a good fit. She knew this time would be different. She was no longer at the early stages of breast cancer where people said she was “lucky” and should expect a full recovery. Now she needed to find a group of women who could understand and handle the seriousness of her situation.
Finding the Right Fit
If you do a search for cancer support groups, you’ll likely be inundated with results. There are so many good organizations that offer resources like BreastCancer.org and Susan G. Komen. Plus there will be local groups, too.
These can be great options for some. They usually offer a more organized experience with a leader or moderator. However, many women want or need a less traditional group, so they’ve been looking to alternative options like Facebook Groups.
In the past year, the number of people using Facebook Groups has doubled. It seems like you can find a group for just about anything these days, and the members often take great pride in building their community.
Facebook groups come in three categories: public, closed, and secret. Most of the breast cancer groups you come across are closed, meaning you have to answer a few questions first to be accepted. Secret groups are usually hidden from search (so you have to be invited by a member), but they can also be a great way to connect with a group in a more private way.
If you’re looking for options, go to Facebook and type in “breast cancer support” and then toggle over to the “Groups” tab. Here are some of the results you’ll find:
Searching for the right group can feel overwhelming at first, but keep scrolling until you find the right fit. Maybe you don’t want to belong to a huge group with 10,000+ members. Or perhaps you’re looking for a specific group to your region or situation.
No matter what, Kulik says don’t give up. Join a few different groups to see what works for you. If you join one and it’s not helping or it makes you feel worse, unjoin or try another. And as you do look for an online support system, Kulik has one more great piece of advice.
“When I decided to go find a Facebook group, my oncologist gave me a big piece of advice that I still give others today,” she says. “She said, ‘Do not let the groups come up in your feed. Change your settings so it doesn’t just pop up when you’re scrolling through Facebook. You don’t want cancer bombarding you every day.’”
Kulik took her doctor’s advice and changed her settings. So now she gets to choose when she goes into the group to interact, share, or just read others’ posts.
No two days are the same and Kulik definitely sees her fair share of challenging ones. But she’s happy to have her support system there every step of the way, and she hopes to provide that same care to others.
She writes, “It may be too late for me, but I won't go without shouting from the roof and leaving this earth knowing I at least tried to make a difference.”