In the last four years I have tried almost anything that someone told me would make me feel better: CBD, infrared saunas, acupressure mats, scented candles, memory foam pillows...the list goes on. In our hyper productive, quick-fix culture we are told there is a solution for everything, even chronic disease. I look at my bedroom floor now and it is littered with devices, tools, supplements and a whole lot of plastic. Some of it helped, a lot of it didn’t, but each transaction occurred in a time of desperation.
So many of the products I bought came from social media: recommendations from sick friends I have made online, pages dedicated to helping people with illnesses like endometriosis or ME and, often, sponsored Instagram adverts. I try not to feel guilty for prior purchases as I know that, like so many others, I was dismissed by the NHS. Private specialists I paid couldn’t help either and instead of coming to terms with diseases that aren’t going to get better, it is only natural to search for alternatives. In that vulnerable position, pseudoscience – or heavy marketing – can win.
Olive is 23 and lives with complex chronic illnesses. She spoke to Refinery29 about the experience of being targeted by Instagram ads which try to appeal to her health conditions. "I have no interest in them but they are surprisingly accurate for my symptoms. At times it heavily impacts my mood. I use social media as a method to relax and disconnect from my body so when I’m reminded of being ill, of chronic pain, my mood will drop."
When I see the ads for supplements or 'cures' it feels violating in a way. Even my phone is labelling me as chronically ill. Sometimes I just want a break.
How do these advertisers know more about our bodies than we do? Mental health legal policy expert Leanne Maskell explains: "Every second you spend online, social media platforms can collect your data to build a profile on you, which advertisers can then use to target you based on your 'interests'. So if you’ve researched a certain health condition or are part of an online support group, you’ll be flagged to advertisers as having an 'interest' in that topic." Leanne reminds us that although this targeting can be accurate, "algorithms don’t have morals".
There is a rhetoric that spending time online is inherently damaging to our mental health – and in some cases that may be true – but many chronically ill people use Instagram as a place to meet other sick folk, connect over shared experiences and discover ways to make life a little less painful. Sometimes, when we are bombarded with adverts targeting the most vulnerable parts of ourselves, we are left feeling like we are somehow deficient. Olive says: "When I see the ads for supplements or 'cures' I worry I’m not doing enough for myself. It feels violating in a way. Even my phone is labelling me as chronically ill. I’m aware of my health and see those words everywhere. Sometimes I just want a break."
Ill or not, most of us like things that look nice. The science backs it up: aesthetics play a powerful role in our desire to buy things. We also know that buying something sets off a chemical reaction in our brains – a dopamine hit that makes us feel good (the expression 'retail therapy' exists for a reason). When we couple the desire for new, shiny things with an underlying feeling of being less than, a person suffering with poor health who might be looking for a (nonexistent) answer is easily swayed towards purchasing all sorts of things that claim they can help.
Nineteen-year-old Tam fell into one such situation last year, seeking anything that might help with a severe flare-up of endometriosis. They were already using a TENS machine (a common device that can be purchased at relatively low cost and was around for years before Instagram influence became a thing). They were targeted by ads for Livia, a wearable device described as a scientifically proven "off switch for menstrual pain". Tam was drawn in. A Livia machine uses "electronic micro-pulses" to target pain and costs £127, compared to £40 for an unbranded device. Livia's manufacturers claim that the device uses "state of the art technology" and can relieve menstrual pain "even in the most severe cases" but Tam noticed no difference in their pain compared to their old machine. Tam was persuaded by marketing that promises users their lives will be changed by this new device which will make their pain go away. In many cases, buyers like Tam are paying an inflated cost for something they already own, under the guise of it being the better, newer, more advanced model.
Being chronically ill can be expensive so where you spend your money can be complicated. Many people who are chronically unwell are unable to work full-time, if at all. The government provides a benefit called PIP (personal independence payment) to assist with the extra expenses of being unwell. It can be spent however an individual wishes, whether that's on mobility aids, assisted transport or medicine not covered by the NHS. Ciska is 25 and living with multiple illnesses. She spoke to Refinery29 about products that are advertised through social media as the answer we have all been waiting for. "I think it’s gross that companies profit off of desperate disabled or sick people. Last year my health really took a turn for the worst and I was prepared to buy anything to help myself and that made the internet quite a dangerous place to be because you just get sucked into the ads so easily." Ciska describes her situation as privileged – she is able to work and has a disposable income that she can spend on any new products she wants – and knows that not everyone is in the same position. "So many disabled people don’t have that and are spending their PIP or benefits on nonsense because they’re desperate."
Who is responsible for allowing these ads to target vulnerable individuals? The Advertising Standards Authority's (ASA) 2021 influencer monitoring report found that only 35% of Instagram advertising posts were compliant with ASA rules. A large proportion of the ads we see on social media platforms are not properly disclosed or labelled as advertisements, meaning users are unable to see clearly what content is paid for and what is not. Leanne explains what causes the grey area of responsibility: "As targeted adverts are based on 'interests' rather than 'conditions' (i.e. you are looking at posts about a health condition rather than your doctor selling this information on), the law becomes very opaque because it is online. The laws of one country may not apply to another but we may still see the content. It’s a wild west and the law is struggling to catch up."
This isn’t a new problem but as with everything in the online world, it has morphed into something more complicated, which is more able to evade rules and laws and less likely to be solved quickly. Leanne concludes: "While targeted advertising has existed for years in various forms, it can be dangerous when combined with algorithms as it can seek us out 24 hours a day, poking and prodding us until we give in."
For now it seems it is down to consumers – in this case, the chronically ill users of Instagram – to be more discerning. It feels unfair but it is the only way we can protect our limited funds. As Ciska says: "Now, I'll only trust the reviews of other sick people. I try to remember that nothing is likely to be a life-changing cure, especially if it’s going to cost me money."