Health

#ChemoSelfie Is Changing the Face of Cancer

January 26th 2016

When 25-year-old Amanda Beneway was diagnosed with gastric cancer, there wasn’t a question about whether she would share her diagnosis and subsequent chemotherapy rounds on Instagram. Using hashtags like #chemoselfie, #chemocutie, and #cancercutie, she has let friends, family, and strangers follow her journey and see a part of her life that many other cancer patients try to hide, such as hospital visits and compromised immune systems.

“I think it’s important to normalize treatments, because it makes it less scary for everyone affected,” Beneway told ATTN: of her decision to be open about her diagnosis and treatment on social media. “I can’t imagine keeping all of this to myself. I think it would be too much stress/weight on my shoulders. I also want my friends to be able to see this part of my life, because I want them more comfortable with my diagnosis. I don't want them scared or worried or feeling like it's the elephant in the room. I Instagram as much as anyone else my age, and this is just a part of my life. I don't want it to be taboo.”

But Beneway's posting doesn’t just normalize the diagnosis for those close to her. The New York resident also pointed out the benefits for her own mental health of posting chemo selfies as she deals with what can be a frightening and isolating experience.

“[It] turns it from something uncomfortable to just another part of my day,” Beneway said.

She’s not alone

Beneway is part of a new generation of cancer patients who are sharing their journeys on social media, with many using #chemoselfie and other hashtags as a way to lift the veil on treatments that are usually private. Remember the "Sex and the City" character Samantha and her breast cancer diagnosis during the 2003/2004 season? She was resistant to telling even her closest friends, hid her hot flashes, and was rarely seen without one of her outlandish wigs — except when she took hers off in an episode at a cancer benefit, receiving a standing ovation for her bravery.

Samantha Jones speaks about cancer in "Sex and the City"YouTube/grigser87 - youtube.com

That approach is changing, however. As younger cancer patients open up with increasing candor about their diagnoses online, the conversation around cancer is slowly shifting.

“I think the whole conversation around cancer is changing, thanks to social media,” London-based blogger Alice-May Purkiss said. “There’s a lot of openness and support, which I don’t think you’d get without it.”

The 27-year-old Purkiss was diagnosed with Grade 3 triple negative breast cancer last July. She started blogging and posting about her experience to encourage people to self-check, including younger women.

“I was 26 at diagnosis, and this [form of cancer] tends to be an illness for women over 40,” Purkiss told ATTN:. “I predominantly use the hashtags #checkyourchebs and #screwyoucancer, but I also wanted to use #chemoselfie to show that, even though having chemo is bleak, it's possible to take control of your experience.”

Purkiss' posts started as a way to raise awareness. But she echoed Beneway in describing the personal benefits of taking to social media with her cancer odyssey:

“[For] me, cancer takes away every element of control in your life. You're left at the hands of doctors and medical professionals, and you just go along with whatever they tell you to do. My posts on Instagram allow me to tell the story my way, taking back a bit of control, and adding a bit of empowerment and humor to my journey.”

#chemoselfie proves the internet is full of more than trolls.

Bethany Meissner started posting her story online, too, because she “needed to know that other people like me had gone through this and come out OK. I hoped that maybe by sharing on Instagram, I’d help someone else know that they could go through this.”

Meissner, 31, of Maryland, was diagnosed with uterine cancer nine weeks before her wedding. Early into chemotherapy, she posted a selfie of herself trying on wigs. She told ATTN:

“I tried to joke about it, but there was a good chance my wig would be worn for my wedding day, which was really upsetting me. My fiance and I had bought our wedding rings at a local market months earlier (before I was diagnosed) from a local jeweler, and she and I had followed each other on Instagram. Shortly after posting the photo of me trying on a wig, she sent me an email that was one of the kindest, most compassionate things I’d read. She hadn’t had cancer, but had needed wigs for another medical reason. Her email made me feel like I could handle losing my hair.”

“Posting to Instagram helped ground chemo days in something other than needles and pain,” Meissner added. “Posting helped me tap into support that kept me going and also made me laugh.”

It’s a recurring theme among those with whom ATTN: spoke: Sharing photos on social media to demystify cancer diagnoses for other young people results in support from the internet because of their openness.

But there’s still room for progress

Anni started posting online because she wanted others to know that “a twentysomething-year-old can get cancer” after she was diagnosed with metastatic Her2+ breast cancer at the age of 26 in 2014. The Finland resident has found a lot of support but has also felt isolated because of the lack of online communities (and, in some cases, in-person support) for younger adults with cancer.

Beneway had a similar experience in New York, saying that she even started a Tumblr hoping to “connect to other young people with cancer,” but had trouble finding anyone. “Every time I go to chemo, I only see elderly,” she told ATTN:.

Being a young adult with cancer can be bewildering and isolating, since conversations typically revolve around children with cancer or those over 40. Despite these challenges, Anni has words of encouragement for others out there in a similar situation:

“I’d like to advise people to talk about their disease. Maybe there’s a chance you’ll find someone who is going through the same shit you are in. And remember that life doesn’t end, even though it feels like it at the time of diagnosis. I’ve been traveling, and I’ve been to rock festivals and having a blast when I have had the energy.”

You can check out more posts from individuals sharing their cancer journey on Instagram and Twitter with #chemoselfie below:

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