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November 19, 2019

A social network for cancer patients is helping them connect without fear of friends pitying them for their diagnosis – Business Insider

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Fabian Bolin found thinking about 900 days of chemotherapy far more daunting than the possibility he might die when he was diagnosed with acute lymphoblastic leukemia in May 2015.

“It felt like everything I had built up and worked for was gone,” he told Insider. “My career, my future, my progress, everything was completely evaporated. And that made me so sad.”

Bolin quickly realized that doctors couldn’t give him the information he was after — whether he would be able to work, what a regular day would now look like, or even what he could eat to continue living life to the fullest.

“The doctor told me ‘eat whatever makes you happy,’ and that answer was so frustrating for me because it felt like I wasn’t being taken seriously,” Bolin said. “That’s the first time I really got in touch with their inability to address human needs.”

Bolin turned to social media instead. In July 2015, he wrote a post on Facebook where he explained how doctors informed him his pain and difficulty breathing was caused by a type of blood cancer. He was given a 60 to 70% chance of survival, but he was overwhelmed by what lay ahead of him.

“While I do not yet know how I will spend my days over the next couple of months, I have decided that I want to share my story and my fight with all of you,” Bolin wrote. “I’m going to write about the treatment, take photos and videos (yes, I will go bald), and tell you how I feel.

“Hopefully I can inspire some of you to really value and appreciate your life, and perhaps I can help others in similar situations.”

People often talk about their diagnosis being a life-changing experience. But for Bolin, it was what happened after his Facebook post went viral and was shared 13,000 times that really made an impact.

“Literally thousands and thousands of people from all over the world sent their love back to me,” he said. “I received so much support, loads of advice, and personal stories started pouring in, not just from strangers, but also from close friends.”

He decided to set up a blog, called Fabian’s War on Cancer, to candidly tell his friends and anyone else who was curious about his journey through treatment. When it reached 200,000 monthly readers, he knew he had to take it further.

“I started thinking, ‘What if we can build a platform that replicates the experiences that I have and provide this platform to cancer patients and loved ones on a global scale?'” he said.

“If we can do that in a good way, we can radically improve the mental health situation for cancer. Or perhaps solve it once and for all.”

What is it about cancer that affects people so deeply?

Bolin launched War On Cancer — a social network for anyone affected by the disease — with his childhood friend Sebastian Hermelin in May 2016. Their main objective was to fight the mental health problem of cancer. Hospitals and doctors take care of the survival aspect, but patients have to work out how to tackle everything else themselves.

Bolin and Hermelin have asked themselves over and over again through building War on Cancer why so many patients get depressed. What is it about cancer that affects people so deeply?

As well as being a tough, deadly disease, a cancer diagnosis comes with a severe loss of self-esteem and self-actualization — the sense of having a purpose. It also makes people feel alone.

It seemed like people were just waiting for somewhere to tell their stories because within a couple of weeks from the launch, cancer patients from 20 countries were talking about over 35 forms of cancer on the platform. A third of the people on there were not patients but partners, friends, or siblings of people going through cancer treatment. There are now around 3,000 registered users.

War on Cancer looks a little like Instagram, with photos of trips, food, and selfies. There are discussions about chemotherapy and other treatments, and users can search for specific diagnoses, age, relation to patient, and stage of cancer. But people are more likely to post about their lives and hopes for the future, Bolin said.

“That’s what we are trying to facilitate here, that people understand or they are more than just their diagnosis,” he said. “They’re more than a patient — they’re a human being … They are connected to cancer and that’s how we start to increase connection and self-esteem.”

There is still a ‘cancer phobia’ in society

People are scared to talk about cancer, Bolin said, because of the “cancer phobia” in society. He believes this is a major driver of depression among patients. This only adds to the isolation patients feel.

“The second I mention that I have cancer, everything changes around me,” he said. “Friends stop calling me or they call me way too much.”

You can have thousands of people around you, he said, but if nobody understands what you are going through, that’s not going to matter.

He said part of the societal fear comes from how cancer used to be a death sentence. While it shouldn’t be overlooked that many people have lost loved ones to cancer, it’s also true that many others survive.

“We are kind of in a situation where everybody thinks about as cancer patients as someone who’s about to die, basically,” said Bolin. “That leads to a lot of people talking to a cancer patient as though this might be the last time we’re speaking, which can obviously then kind of explain why all conversations become awkward.”

After setting up the blog, Bolin was opening up the conversations to friends he met on the street. Rather than skirting around the topic, they could see that his last chemo session went well, and ask him out for a beer.

“This distinction for me was essential,” Bolin said. “Because it made me understand that I’m a human being, I have an identity, I’m not a victim.”

‘Through this app, I have helped at least one person and that feels good’

Mats, from Sweden, was just about to finish six months of chemotherapy to treat his colon cancer. He told Insider he found himself in a “vacuum of emptiness” when he was discharged, with nobody to talk to about what he’d gone through.

“Everything had gone fast, from one day having been out and running to suddenly waking up with a hole in my stomach and a 25 cm long scar across the abdomen,” he said. “Two complicated surgeries and a new body and a new mind, which made me feel estranged from the world: Who am I now?”

Finding War on Cancer helped Mats connect to people again, because he learned other people were struggling with this feeling of emptiness too.

Jodi, from Canada, felt trying to communicate her fears to her family and friends wasn’t the same as talking to someone else who was also diagnosed with breast cancer.

She found War on Cancer opened her world up to people going through the same thing, who she could ask for advice and get feedback on treatments and side effects. She also found she could help other people, like one woman who said she was experiencing tingling in her hands and feet.

“I told her my oncologist put me on medication for it and it worked,” Jodi said. “I suggested she talk to her oncologist about neuropathy and mention the medication I was on. Two weeks later she messaged me and thanked me for changing her life because after her appointment she was prescribed the same medication and it worked and she could do things with her kids.

“Through this app, I have helped at least one person and that feels good.”

Social media is full of sympathy

A shortfall of social media is that anything perceived as negative is usually met with sympathy. Bolin didn’t want people interacting with him as if he was going to die, and knew other cancer patients felt the same.

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