'This TikTok creator said she was about to die. Years later, I'm still thinking about her lies.'

This article discusses voluntary assisted dying.

Before we dive in, I should tell you that all of this happened years ago, but like Charli XCX, I think about it all the time.

I first scrolled past Hope Otto in late 2021 while I was sitting in the back of an Uber on my way home from the movies. I was in an Uber not because I'd been drinking, but rather, because I was still recovering from a breakdown I'd had in 2020. At the time, my energy was extremely limited, so I didn't feel safe driving, and the bumpy jolts of a 45-minute bus ride would give me a pain flare that would leave me incapacitated for a full day after.

I was tired, and possibly being rude, depending on your stance on Uber etiquette. I had my airpods in, and he was on a call, so I personally don't think there was a problem with it, but whatever! I chose my choices, and that night, I was scrolling aimlessly on TikTok when I came across Hope.

Who is Hope Otto and what did she do?

I can't remember the exact video that first came up on my For You Page, but it was one of the ones where she was talking about VSED.

What is VSED, you ask? Great question, and one I had at the time, also.

VSED stands for Voluntarily Stopping Eating and Drinking, and is used an end-of-life option for people who "struggle with the unrelieved suffering of a chronic or incurable and progressive disorder".

Because I'm nothing if not fascinated by the pain and suffering of others, I hit follow. I wanted to know more about this poor girl and why she was getting ready to document her end-of-life journey.

Over the next few weeks, I became fascinated by Hope's story. It wasn't just that she was getting ready to die. It was that, those illnesses she had, the ones that were prompting her to end her life in her 20s?

I have a lot of them myself.

In one video (now-deleted but preserved forever on reddit), Hope explained the conditions she was dealing with.

Noting that she had "quite a few diagnoses", Hope said that the "main one" was Ehlers-Danlos Syndrome, a connective tissue disorder that primarily affects skin, joints and blood vessels.

"It was originally diagnosed as the Hypermobile type [hEDS], however recently we're thinking it's more likely the classic type," she said. "This causes me dislocations in my major joints, so shoulders, elbows, wrists, knees, hips, ankles, fingers, toes, ribs; dislocate/subluxate [sic] all day long, I usually get about 20 a day that I have to relocate, so that causes an extreme amount of pain."

While hypermobility is one of the main symptoms of Ehlers-Danlos Syndrome, an EDS diagnosis is essentially the umbrella under which many co-morbidities can fall, including heart and gastrointestinal issues.

According to Hope, she was also dealing with gastroparesis and intestinal dysmotility.

"[It] basically [means] that my stomach is partially paralysed, and my digestive tract, my small intestines, large intestines, do not flow the right way and/or at the right speeds," she said. "This causes me to be nauseous and vomit upwards of 15, 20 times a day... I just puke endlessly, and I need... I need support."

Hope said that she was "currently tubefed" because she hadn't been able to "keep anything [she had] eaten down" in almost three years, and that she was often dealing with painful, "life-threatening" issues with her feeding tube."Also because of the Ehlers-Danlos syndrome, I have something called POTS, it's Postural Orthostatic Tachycardia Syndrome," she continued.

"This causes me extremely high heart rates and extremely low heart rates. My range from my loop recorder that I have in my chest last picked up from 21 beats per minute to 207 beats per minute. So that causes me to feel like crap, and I pass out quite frequently, too. Usually I'll faint about two or three times a day."

Hope went on to say that because her joints were "deteriorating pretty rapidly", she would "have to have joint replacements or joint fusions", and that the joints "would have to be replace every 10 to 12 years"."I'm only 24," she said. "So I'd have to have four... about four replacements of EVERY JOINT. Just think about how many surgeries that is."

Finally, Hope said that she was also dealing with Addison's Disease, which meant that her blood sugar levels were constantly dropping to "very, very low" levels."So I pass out frequently from that, and the issue with that is, no matter how much sugar we use — my friend has boiled like six cups of apple juice and sugar — my sugar sometimes will not come up and I feel like crap for however long that lasts," she said."So there's definitely a lot going on, and there's more to it than this, but that's the simplified version."

As someone who has joint hypermobility, POTS and stomach issues, I really felt for Hope, because it seemed like she had been dealt life's roughest hand — the absolute worst-case scenario for every condition.

'Wow,' I thought. 'Her conditions are so much worse than mine, that must be agonising.'

While my own symptoms were improving with medication, physiotherapy, pain management techniques and psychotherapy, Hope's case seemed futile.

Hope said that she and her doctors had gone through all her treatment options, and come to the conclusion that she wouldn't be able to stabilise her quality of life. The cost and suffering that it would take to manage her conditions wouldn't be worth it. Instead, she wanted to go out on her own terms.

She was going to marry her boyfriend, she said, and then go into a hospice facility, where she would undergo the VSED process. During her time in hospice, they would make her as comfortable as possible, and then she would pass away within a few weeks.

Of course, as you can probably guess, that's not exactly how it played out.

What happened next?

In November 2021, Hope began documenting what was supposedly the beginning of her VSED journey. In one video that has been preserved by the people of the /illnessfakers sub-reddit, Hope offered "an update on the hospice situation".

In the video, she also mentioned she was waiting for a USD$27,000 disability claim pay out before going ahead with her plans.

She wasn't "willing to throw that out", she said, because she wanted her family and friends to be able to receive the money.

"I'm holding on until I can get that," she said.

And hold on she did, because to put it plainly: she was not dying, and she wasn't doing VSED, either.

Over the next few months, Hope maintained that she was going to be admitting herself into a hospice facility in order to end her life. During this time, she posted regularly on TikTok, updating her growing follower count with stories of emergency room visits, answering questions about VSED, and offering advice. She also frequently cited her inability to access opioid pain medications as one of the reasons she was pursuing VSED.

How it all fell apart.

As time went on, Hope offered several updates to her followers about why she hadn't yet begun the VSED process.

Remember how she said that she was waiting for her disability back pay? She mentioned in one video that she received her first payment, but rather than the money going to her family and friends, as she originally stated, it would be going toward her wedding to her now-fiancé.

Hope said that she would be postponing the VSED process for a number of reasons, including wanting to spend Thanksgiving with her loved ones, wanting to have her wedding before she died, the hospice facility not taking her insurance, and… internet rumours?

Meanwhile, she also announced that she would be selling merch, with the funds set to go to her cremation after her death. It was around this time Hope also said that one of her friends would be coming to stay with her during the VSED process.

On December 14, 2021, Hope uploaded a video captioned "IT'S SET IN STONE", in which she said that she was "finally assigned a hospice company", and that they'd completed "all the paperwork and admissions" that day.

"My nurse is currently on the phone with my new doctor, placing orders for pain medication, nausea medication, anxiety medication, all that fun stuff, and I should have that in my house tomorrow," she said. "So, things are finally set in stone, I'm starting with this company as of today, which is amazing.

"I met with my nurse who is going to be my primary nurse throughout this entire thing, and she is an absolute sweetheart. She's a younger woman, so she's like, pretty down to earth, thankfully, so yeah, if you have any questions please let me know, but here we go."

After December 16, Hope's TikTok fell silent, prompting many of her followers to wonder what was happening. During this time, Hope's carer friend posted a video saying that she was still alive but having a rough time, and that she would return to the internet when she was feeling better.

Then, on December 21, Hope went live on TikTok — and her story began to fall apart. In the video, Hope slurred her speech, appeared disoriented and seemingly passed out. Followers began to question her story and wonder if she was on drugs, and people who claimed to work in hospice care began to point out discrepancies in Hope's story.

Hope didn't post on TikTok again until December 29, when she dismissed the conversations around her illness as "rumours and drama flying around the internet" and said that "there [was] absolutely no truth" to any of them.

"I am on pain medication, I am on anxiety medication, all of which have side effects," she said.

Hope also said that as a result of these rumours, she "had to postpone the VSED" because "unfortunately, some of [her] friends did get involved" with the online drama, and VSED required 24/7 monitoring. You can be the judge of whether you think that makes sense.

Then, on December 31, one of Hope's followers allegedly found and reached out to people in Hope's circle. Screenshots of a group conversation between this TikTok user and people who are supposedly Hope's friends and family hit the internet, and in the conversation, they not only accuse Hope of lying about the VSED process, but claim that she also faked having brain cancer in 2018. They allege that Hope started a gofundme for her healthcare expenses, but later bought a new Jeep with the money, and soon after, screenshots from her Instagram in 2015 talking about her cancer journey were circulated. At this point, Hope set her Instagram to private.What in the Belle Gibson had I stumbled into?

On January 4 and 6, Hope's now-former best friend went live on TikTok and answered questions from viewers. P said that she was "confused, frustrated and very hurt" by the situation and the revelation that Hope had seemingly been lying to her for months. She also noted that she and Hope were often together for days at a time, but that she had never seen Hope experience a joint dislocation, despite her claims that she would have multiple dislocations a day, and that she had also seen Hope eat and drink by mouth, despite alleging that she needed to be tube-fed.

Hope doubled down on her story for the next few months, citing "further issues" for delay VSED again (and again).

Finally, on February 17, 2022, Hope posted a TikTok with a sound about "moving on", which she possibly didn't intend to be her final post… but on March 8, 2022, her account was banned for multiple community guidelines violations.

Where is Hope Otto now?

If you know, let me know, because I have no idea. Her Instagram is private, and her TikTok account is long gone. Still, I search her name a few times a year to see if she's popped back up anywhere.

In hindsight, there were so many red flags in Hope's story along the way. I feel foolish for believing her, but I was primed to do just that. As someone who has dealt with invisible illnesses for years, my inclination is to believe people when they tell me they're sick.

When Hope said she'd been to plenty of doctors who couldn't help her, I believed it, because I've done the same. It took me eight gynaecologists and over a decade before I was diagnosed with endometriosis. I couldn't even tell you how many physios I'd seen — many of whom had pointed out how flexible I was — before one of them gave me any indication that my joint hypermobility was connected in any way to my chronic pain. I've spent too much time being sick and too much time knowing how the medical system constantly fails women to think it's that far-fetched that Hope's story could have been true.

It's been a few years now, but I still find myself wondering how much of her story was true. If any of it was true.

My gut tells me to believe that she really was sick, on some level. I mean, of course it seems as if she was sick in some sense — healthy, stable people don't fake illnesses to this extent. But when I think about her previous alleged cancer lies, and the way she manipulated her audience for her own financial benefit, I have no choice but to question everything.

At this point, I doubt I'll ever know, but it has made me a little more wary of what I see online. It reminded me how important it is to balance compassion with critical thinking, and to check my own biases when I'm engaging with any content online — chronic illness or not.

Finally, it made me reconsider the kinds of content I was watching, and prompted me to think about the boundaries I have when it comes to caring about the lives of strangers online. Compassion and empathy for others are good, but parasocial relationships with strangers? Less so.

A huge, huge hat tip to the reddit r/illnessfakers sub for their meticulous documentation of Hope's social media.

Feature Image: TikTok @hopeful.stripes via Reddit r/illnessfakers