Forget funeral selfies. What are the ethics of tweeting a terminal illness?

Lisa Adams is dying of breast cancer. She has tweeted over 100,000 times about her journey. Is this educational or too much?
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Lisa Adams
Lisa Adams has been writing and tweeting about her battle with Stage IV breast cancer. Image: screengrab of Twitter Photograph: Guardian

Lisa Bonchek Adams is dying. She has Stage IV breast cancer and now it's metastasized to her bones, joints, hips, spine, liver and lungs. She's in terrible pain. She knows there is no cure, and she wants you to know all about what she is going through. Adams is dying out loud. On her blog and, especially, on Twitter.

She has tweeted over 100,000 times about her health. Lately, she tweets dozens of times an hour. Her Twitter followers are a mixed bag. Some are also battling cancer or work in the medical field, others seem to follow Adams' life story like a Reality TV show. Here's a taste of what it's like:

She has been scrupulous about keeping track of her seven year decline. Her journey began with six month routine postpartum checkup after the birth of her third child. You can read all about the details of her disease and treatment on her blog right up until about this morning, which is when she posted her latest entry, only a few hours after the previous one.

She begins each day with the same tweet:

Over the past few years she has tweeted more than 165,000 times (well over 200 tweets in the past 24 hours alone.) Her clear-eyed strategy of living with cancer for as long as she can has caught the attention of many women with breast cancer, several writers and thousands of fans from everyday lives all over the world. I heard about her in the process of organizing a Guardian US Living Hour chat on DNA and cancer tumors in early November. Before you knew it, she was in the chat having her tumor genome and her cancer trial discussed in detail. I never met her, but I swapped tweets and emails with her, and kept track of her health.

Which is why a few weeks ago I noticed she was tweeting a lot more and from a situation she described as agonizing. The clinical drug trial she was on wasn't working. Her disease seemed to be rampaging through her body. She could hardly breathe, her lungs were filled with copious amounts of fluid causing her to be bedridden over Christmas. As her condition declined, her tweets amped up both in frequency and intensity. I couldn't stop reading – I even set up a dedicated @adamslisa column in Tweetdeck – but I felt embarrassed at my voyeurism. Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies? Why am I so obsessed?

Social media has definitely become a part of Adams' treatment (I wonder what her hospital, Memorial Sloan-Kettering Cancer Center, thinks about that.) Tweeting makes her less lonely, it gives her a purpose, it distracts her from her pain, and the contact it brings clearly comforts her. Adams has managed to keep her dignity and her deft sense of humor intact as she has charted her decline.

As she tweeted a few hours ago:

Adams is not alone in doing this. Journalist Xeni Jardin live tweeted her cancer diagnosis two years ago and the long treatment journey. Jardin told the Guardian last year that she wasn't sure if she would be quite as "sharey" if she could go back in time.

It's clear that tweeting as compulsively as Lisa Adams does is an attempt to exercise some kind of control over her experience. She doesn't deny that. She sees herself as an educator, giving voice to what so many people go through. And she is trying to create her own boundaries, flimsy as they might be. She'll tell you all about her pain, for example, but precious little about her children or husband and what they are going through. She describes a fantastic set up at Sloan-Kettering, where she can order what she wants to eat at any time of day or night and get as much pain medication as she needs from a dedicated and compassionate "team", but there is no mention of the cost. She was enraged a few days ago when a couple of people turned up to visit her unannounced. She's living out loud online, but she wants her privacy in real life.

In some ways she has invited us all in. She could argue that she is presenting a specific picture – the one she wants us to remember. "I do feel there will be lasting memories about me. That matters," she wrote to me in a direct message on Twitter.

The ethical questions abound. Make your own judgement.

Are those of us who've been drawn into her story going to remember a dying woman's courage, or are we hooked on a narrative where the stakes are the highest?

Will our memories be the ones she wants? What is the appeal of watching someone trying to stay alive? Is this the new way of death? You can put a "no visitors sign" on the door of your hospital room, but you welcome the world into your orbit and describe every last Fentanyl patch. Would we, the readers, be more dignified if we turned away? Or is this part of the human experience?

We've put together a condensed timeline of Lisa Adams' tweets. You can also read her entire feed.

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