'Coming Out' with Cancer

'Coming Out' with Cancer

OneVillage
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OneVillage
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OneVillage Team

22 days ago at 4:50 PM

From going public on Facebook to friends who ‘ghost,’ patients and experts discuss the ins and outs of sharing a diagnosis

There’s no easy or right way to do it

Sharing a cancer diagnosis is messy — and there’s really no easy or right way to go about it, said Dr. Bonnie McGregor, a public health researcher and psychologist with Fred Hutchinson Cancer Research Center. She also noted there’s also no need to tell anyone if you’d rather not share.

“It’s important to pay attention to what you need,” said McGregor. “Think about what you need and who you’re talking to and what kind of support they’ll be able to give you. Some people can provide practical and tangible support. Others are good with emotional support — these are the people you can talk to about your fears. Others are good with companionship. They don’t want to go too deep emotionally but boy, they’ll go shopping or take you to a movie.”

After stumbling through those first few phone calls, I began writing down key points I needed to get across, almost like a script, so I could quickly and efficiently share the news without blurting out too much or forgetting something altogether.

While some swear by only telling people face-to-face (crucial with small kids), I came out all kinds of ways: in person, on the phone and via email, text and social media. In retrospect, I might have done this differently: one friend I told via phone collapsed in the middle of the street (her father had died of cancer a few years earlier), but it’s hard to think of everything when you’re shell-shocked.

I did soon learn that if I remained calm and upbeat, others would usually do the same. So I tried not to share my news on the days when I felt too overwhelmed.

Delegate, delegate, delegate

You don’t have to do all the dirty work of spreading the news yourself.

I tapped people to help me spread the word from day one (hour one, to be exact), then moved on to group emails and eventually, started a blog. Other patients I know designated a spouse, significant other or parent as their “information officer” so they could focus all their energy on treatment and recovery rather than running Cancer News Central.

Remember, it’s not just about breaking the news of your diagnosis, it’s also about managing the ongoing tsunami of questions regarding surgeries, treatment, test results, etc.

Facebook cancer

Speaking of messages, there’s Facebook, where many share their diagnosis these days.

On the plus side, you’ll get immediate social support — from prayers to proffered meals to practical advice from others who’ve been there. It’s efficient, immediate and you don’t have to have the same cancer conversation again and again.

“Only having to tell the basic story once via social media and group email was easier, emotionally, than the difficult and exhausting process of many, many phone calls,” wrote Frank Catalano in an excellent essay about sharing his wife’s cancer news via social media.

On the down side, you may also get crackpot theories about how you can cure cancer with baking soda or critiques about your treatment choices (this happens in the real world, too). Some people may post “blamey” articles on your wall about the link between cancer and, say,  processed meat (usually right beneath your Fourth of July barbecue pics).

As with all things in life, Facebook can be a mixed bag.

When bladder cancer survivor Lisa Lindstrom, 46, found out she had breast cancer last year she worried she might be judged by her online family.

“I felt insecure, like, ‘What will people think when they find out I have another malignancy?’” she said.

But the Seattle grant writer finally went public and is now glad she did.

“It’s up to each person’s comfort level, but for me, coming out about my cancer has been a very positive and uplifting experience,” she said. “When I feel anxious and not entirely myself, I reflect on the lovely words people wrote. I feel connected to something bigger than myself and this all seems a bit more manageable.”

Secret cancer

Not everybody feels like sharing, of course.

Some people are extremely private or they just want to feel as normal as possible and once cancer’s out of the bag, you will be treated differently. Others are concerned about stigma (think lung cancer patients who constantly have to field questions about smoking). Or they worry a diagnosis will jeopardize their job — or more importantly, their insurance coverage.

“It’s not uncommon to have people be very stealth about it at work,” said McGregor.

Thanks to wigs, prosthetics, makeup and good nausea and pain meds, secret cancer is doable. But there’s a trade-off to keeping cancer on the down-low.

“If you want to keep it secret then you won’t be able to benefit as much from the support,” said McGregor. “I have a lot of respect for people who can’t talk about [their cancer] because it’s helpful to be able to talk about it and it takes energy to keep secrets. And energy is like gold when you’re a cancer survivor.”

Blabbermouths and boneheaded remarks

Keeping cancer a secret also means relying on your inner circle to keep their traps shut. And there’s the rub.

When Rebecca Matos, a 30-something project manager from New York was diagnosed with breast cancer, she shared the news with her mom and a few close friends. But one of those friends told others who told others — bad news travels fast — and Matos soon found herself inundated by phone calls and emails, including one from a childhood friend who chastised her for keeping quiet.

“She said awareness was important and I wasn’t doing the ‘right thing’ to help other women,” said Matos. “I told her I had to do my cancer my own way and asked her to keep it quiet but she  started spreading it everywhere. Now everybody knows — I have a blog — and that’s OK. But it’s about timing. People need to understand that. Patients are entitled to handle their cancer mess the way they wish to. One way to help a patient is to respect their wishes.”

Friends may freak and strangers will step up

Fear can also drive people away.

When I came out, most of my friends were 100 percent supportive, but a guy I was dating scurried off into the sunset and two longtime gal pals simply disappeared. I won’t lie: this behavior — known as “ghosting” in the dating world — was painful. It was also quite illuminating as to who my real friends were.

But here’s a little cancer secret: for every friend that takes a powder, there are usually three or four casual connections who will step up to help in wonderful ways.  People I barely knew sent me books, pies, flowers, food, and a handmade blanket. It was incredible and humbling.

It’s also common, said McGregor.

“People you don’t think of as very good friends will step up and help in ways you can’t imagine,” she said. “One woman [had] a coworker she didn’t know all that well to offer to bathe her dog once a week. It was the most important thing anybody did for her.”

As for those dear friends who fade, McGregor said it’s not about you, it’s about them.

“They may have their own feelings of grief and it’s hard for them to imagine [you] being sick,” she said. “Or they’re not sure what to do or say. Cancer can be scary and you don’t know what buttons are going to be pushed in friends and family members. One of the issues we talk about in our [patient support] group is that not everybody can meet your needs.”

But even if others aren’t there for you, McGregor said, you will be.

“When you get a cancer diagnosis, you have to confront your mortality and there’s something in doing that,” she said. “It pits you against something really big and you strengthen your emotional muscle. You get a new yardstick, as far as what you can handle and what’s important and what’s not.”


6 comments

Last activity by Muhammad Sameer

M
Muhammad Sameer

I agree with you @Gabi.

C
Cindy Walters

I completely agree with the unexpected acquaintances who have become our best supports. I am my husbands caregiver and worked until just recently when I couldn't do both any longer. Some work friends have become our best allies. And some folks who I thought would be better have barely been around. A friend of my husbands actually said he'd visit when he felt better! Like did you really just say that?! Every time he calls I strongly encourage a visit, but he never does :( Just have to keep focusing on our new great friends that are there for us!

M
Mary Foti

Looking back on when I was first diagnosed, I think I "overshared". But by telling everyone about my cancer, I was also helping myself process the fact that I had cancer. It didn't seem real. But not everyone needs to know every detail. Bottom line is to do what makes you feel comfortable at the time. It's your illness and nobody else's.

Kirsten
Kirsten Lewis

On point sis!

Gabi
Gabi Allen

People will judge you no matter what, so live life the way that you want it. Thanks for sharing real life stories in this article, it's quite funny and a bit sad for people who don't understand what a cancer patient is going through.

Esther
Esther Hall

I remember my aunt fell into depression when people found out about her diagnosis because of her care givers. I think that we take away their control and choice over the matter when caregivers like us, put the spot light on us. I hope that we can be more respectful to other patients with their choice.

Anonymous

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