I Would Rather Be a Travel Influencer
It took far longer than it should have before anybody said the word cancer to me or getting diagnosed with any of my other health issues. I keep coming back to the plethora of misdiagnosis, juggling doctor appointments, financial toxicity, and mental strain from all the stretches of time, whenever someone floats the idea that being sick has turned into some kind of lifestyle choice.
Recently, The Telegraph (UK) ran a piece called “How having a disability became cool.” (Read the paywall-free version here.) The byline calls young women “sickfluencers” and says they’re turning chronic illness into a trend that’s fueling economic inactivity. The article moves through POTS, autism, and Tourette’s, leans hard on the argument that people are talking themselves into symptoms, and closes out by adding up what all of this costs the UK welfare system. This kind of framing does not stay in one country, and I expect to see the US version of it soon.
Nobody picks this
I’m eight years into chronic recurring Bladder Cancer. I still have my bladder, which I’m grateful for every single day. I also live with other chronic and painful conditions, including Ankylosing Spondylitis, that decide what my day looks like before I even get out of bed.
Given the choice, I’d hand all of it back. I’d be out traveling, at concerts, on planes, building the career I was building before my body made other arrangements. Most days I’m at home instead, following a consistent regimen that keeps me at least functional, and posting about it so that others could learn and relate.
I don’t get paid for any of this. There’s no sponsorship, no affiliate deal on medical coverage. What I get out of it is knowing somebody is watching my videos or reading my posts at two in the morning and feeling a little less alone with whatever’s happening to them. My hope is that they will be empowered to advocate for themselves and ask the questions they didn’t know to ask, or be inspired to get out and do what they can to bring joy to their life.
Anyone who thinks a person would pick this for the attention has never had to build their month around a treatment schedule.
The numbers on being dismissed
Here’s where I’d point the writer of this article, if she’s interested in what actually happens to women in exam rooms.
The World Bladder Cancer Patient Coalition ran a global patient and caregiver survey, and 39 percent of women reported being given the wrong diagnosis first. The most common wrong answer was a urinary tract infection. When women show up with blood in the urine, they’re roughly twice as likely as men to walk out with a UTI diagnosis, 39 percent compared to 21 percent.
This isn’t a vibe. A nationwide Swedish study looked at close to 30,000 bladder cancer patients matched against nearly 150,000 people without urinary tract cancer. Patients who had filled prescriptions for UTI antibiotics before diagnosis were more likely to end up with muscle invasive or metastatic disease by the time anyone found the cancer.
BCAN puts it plainly on their page about women and bladder cancer. Men get a cystoscopy sooner, while women start treatment later. Women show up with more advanced disease and have worse outcomes, even though men get bladder cancer more often.
Two oncologists said the same thing in an interview in May 2026. Women are diagnosed later and at more advanced stages because urinary frequency and urgency get read as infection.
So when a national paper suggests women are overreporting symptoms, I’d like somebody to explain the gap between that story and the one the data tells.
What social media actually did for me
This is the part the article leaves out, and it’s the part I’d want a reporter to sit with for a while.
Reading other patients’ stories is how I started making sense of my own. People on the internet that I’d never met described things I recognized and named tests I hadn’t heard of. They talked about what each doctor should be checking and what answers weren’t good enough to accept. I took all of that into my own appointments and asked for specific things by name, instead of going in hoping somebody would connect the dots for me.
That’s how I got to a real diagnosis of ankylosing spondylitis, reactive hypoglycemia, subcutaneous lupus, fibromyalgia and a host of other conditions, instead of being told to eat better and exercise more.
This is documented too. Researchers who studied thousands of posts across online health communities found a repeating pattern. Longtime patients share what they’ve learned, newer patients recognize their own symptoms in those stories, and then they ask better questions about managing their condition. A review of chronic pain forums found the same thing. People come for the information and stay because somebody finally told them their experience was real.
That’s not a trend cycle. That’s patients doing education the healthcare system didn’t hand them.
Why this kind of article does damage
When a national paper frames patient advocacy as attention-seeking, that doesn’t stay on the page. It follows us into exam rooms and hands a rushed provider one more reason to hear a woman list five symptoms and reach for the psychological explanation instead of running the test. We already know how that goes, and now we know what it costs in staging.
Being told it’s all in your head isn’t a rare complaint from an oversensitive crowd. It’s the most common thing patients tell me about the years before someone finally believed them.
Adapting isn’t the same as giving up
The article treats mobility aids like props, and that one landed hard for me.
I found out about the Alinker walking wheelchair bike that I now use as my primary mobility aid because another patient similar to my size posted about hers. She talked about getting back outside for walks, so I looked into it. At the time, I was nearly homebound, barely able to walk to my mailbox or grocery shop. I took a chance hoping I could send it back if it wouldn’t work for me. Two years later, I go out and do things to cross them off my bucket list. I am able to walk just about anywhere I want, and farther than I could ever in my life with a mobility aid that didn’t make me look sick or disabled. It gave me back a chunk of my life.
I know first hand that I have personally influenced hundreds, if not thousands, of people who came across my videos and posts. Every accomplishment I have had or accommodation I have used, I learned about from somebody sharing openly online and I have the honor of paying that knowledge forward. That’s what these communities are actually for.
If you’re the one reading this at two in the morning
More of us are talking out loud about what we live with, and it isn’t a trend. It’s people who got tired of disappearing quietly.
If you’re newly diagnosed with cancer and trying to figure out what’s going on in your body, keep asking. Write things down, ask for the specific tests and treatments by name. Find people who’ve already been where you’re standing. You can start with my growing list of cancer support resources at cancersupportstudio.com/resources. It’s free, it’s searchable, and it’s open to every cancer type.
If you work in oncology or primary care, the patient who shows up with research isn’t performing for anybody or looking to get diagnosed just because. They’re doing the work that nobody else did to find the help needed. They also know their own body better than anyone else. Believe them.
