Scrolling through Instagram with a coffee in one hand and my phone in the other is often a fun pastime. I can catch up with friends, look at pretty photography and recipe ideas and generally just switch-off. But that is on my personal account. The story is a little different on my Through the Fibro Fog Instagram account where I talk about my chronic illnesses.
Through the Fibro Fog gives me the opportunity to connect with others who live with chronic illness. It has been a wonderful experience of making friends, feeling supported and even finding a little humour amongst the symptoms, medical appointments and all the 'health stuff' we live with. But it is also a place where I get targeted by companies trying to sell me miracle cures, often with potentially unsafe products. And that kinda makes my blood boil at times.
I'm going to be honest and say that I didn't know how to write this post without getting a little 'ranty' shall we say (I think I may have failed at that . . .) But I know so many other people in the chronic illness community experience the same thing, so this is almost a post of solidarity - I experience the same, and know how frustrating it is.
Being preyed upon online
Most days I get preyed upon online for living with chronic illness. I deliberately call it being preyed upon because companies (and I'm talking dodgy companies here, not reputable ones) are very intentionally seeking me out to sell their often equally dodgy products because I have fibromyalgia, dysautonomia, migraine and other conditions, and because I have an Instagram account where I talk about these.
So how am I targeted online? Well, there's the direct messages to start with. Companies sliding into my DMs to tell me about their 'exciting new product!!!' (there are always a LOT of exclamation marks in those messages). These messages tend to take two forms. The first is the over-the-top message stating that I have been granted an EXCLUSIVE (always in capital letters) discount to their wonder drug, that will cure me of one of my conditions. Often, these wonder drugs are said to have cured the seller's condition, or sometimes, the brother of their aunt's oldest dog (yes, I'm being sarcastic, but you get the picture).
Other times, the messages involve a person who has clearly done some research on my account to identify my conditions. They always begin with 'Hi Claire!!!', then there's a long chatty message as though we are best friends, before they go on to promote the herb or drug that will work wonders for me. It's kind of creepy to know that people are scrolling through accounts trying to work out who they can target isn't it. Do you guys get the same?
Ads don't bother me as much as DMs, but it's getting irritating that they imbue social media. If you scroll through a hashtag such as #chronicillness on Instagram you will quickly come across posts from a company selling dubious-looking products. Facebook accounts get targeted by MLM sellers, often people pretending to have a condition but actually just there to sell products. Perhaps these products are good, but the tactics to sell them far from it.
And don't get me started on those Instagram comments from companies stating they can sell you herbs to cure herpes, cancer, AIDS and other conditions . . . Losing your home if you don't buy their products because you will have have to pay for medical treatments seems to be their new scare-tactic.
Just a few examples I found on Instagram:
Good products, bad products and totally unsafe products
There are some wonderful companies out there producing high-quality supplements and other products that really work and help us out a lot. I've found a lot of products through social media, either from sponsored posts from others or chatting to people with my conditions. I was happy to do a sponsored post for the Koldtec headache ice towel because it's a great product, doesn't make outlandish claims over how it can help, and was designed specifically with those with chronic illness in mind.
Other times though, products seem 'bad' or even downright dangerous. It can be hard to differentiate between good and bad products at times, but if a company is being rather vague about ingredients, the product has weird ingredients, a ton of stimulants, has very forceful or immoral marketing tactics (often using scare-stories) or makes very big claims about its efficacy, then personally I will steer-clear. That definitely includes one company that told a friend on Instagram that she didn't care about her son's health when she didn't buy the herbs being sold.
I've been approached to do sponsored posts for all kinds of 'bad' products that seem unsafe from their ingredients, and I doubt have gone through any scientific testing. I'm not going to name names, but I have turned down over 95% of the offers made to me to do ads. Including one for fat-burning coffee that was ridiculously high in caffeine and would have had me cowering in the dark with a migraine in minutes, while also shaking with anxiety (and maybe ending up in hospital with a massive MCAS flare at that).
Some of the most promoted products that I have seen are 'herbs' (often without actually saying what those herbs are), and supplements that don't clearly state what the ingredients are or have a whole ton of 'extra' ingredients. Often these products are claimed to offer a 'cure', even for conditions that have no cure (that's not to say you can't manage symptoms, but some conditions cannot be 'cured'). If anything could cure me of fibromyalgia I have full faith that my doctor would have prescribed it long ago.
One thing that worries me is that people living with chronic illness often have to be very careful about the supplements they take. Herbs, vitamins or minerals can contra-indicate with prescribed medication, or be a known issue for certain conditions. Alcohol in tinctures or caffeine in tablets or liquids may not be a wise idea for people with a range of different conditions. If you shouldn't eat grapefruit while taking certain drugs for heart conditions, I doubt that taking an unnamed herb is a good idea.
Why are we targeted?
A while ago I had a heart-breaking conversation with a woman who had spent a lot of money on an online test for fibromyalgia. She had done some googling after struggling with symptoms, and found a company that claimed it could tell her whether she had the condition if she sent off some samples, and a big payment, of course. She was told that her sample showed that she had a high chance of having the condition. Understandably, she was panicky and worried, and didn't know what to do.
There is, though, no test for fibromyalgia. It is, as the NHS describes, a diagnosis that is made based upon the exclusion of other conditions, and from a clinical assessment of symptoms meeting particular criteria. The fact that companies exist that claim they have a test that doctors don't only shows us that they have no integrity, and that there needs to be tighter regulation of their practices. Of course, these companies aren't offering any advice on management after they in-effect diagnose someone with a condition.
That regulation is needed because there are too many people in the world with one motivation - money. To them, we are a lucrative market to sell all kinds of products to, including unsafe ones. We are a source of cash, and they don't care that many people with chronic illness have very little of it as they aren't able to work full-time and instead rely on a part-time wage or benefits.
The thing that makes me most angry about this preying upon persons with chronic illness is that these companies know that many people are vulnerable and desperate for help. When symptoms are overwhelming and daily pain is a part of life it is easy for people to put faith in anything that claims it will help. These companies know this and use it to their advantage. They play on our fears, and hope it will lead to us opening our wallets and producing a bank card.
Move on, delete and block . . .
As I said above, I don't have any answers for this online targeting. One route is to report these posts to Instagram, but let's face it, we could be doing that all day long with the number of accounts that exist selling dodgy products.
For me personally, it's just a matter of scrolling past an ad and trying not to let steam come out of my ears from the anger of seeing yet another scam or potentially dangerous product being touted. With DMs I just read, try not laugh (or cry) and press delete. I've blocked a couple of the more persistent ones that contact me over and over again.
My message to 'questionable' companies
It's unlikely that 'questionable' companies will ever read this, but just in case they do . . .
The nice version:
Please leave us alone and keep your miracle cures to yourself. We don't want to take potentially dangerous pills or herbs, and the way you target us is invasive and just plain irritating.
slightly rather ranty version:
Do not contact me, pretend to be my friend, fill my Instagram feed with your ads and post comments on my posts. It's not just irritating, it is infuriating. Don't prey on my pain to get to my cash.
There is no miracle cure to my conditions, and pretending otherwise just shows the lack of morals that you hold in targeting vulnerable persons, often in pain or experiencing other distressing symptoms, who would do almost anything to feel better. If there were a cure I would have been given it by my doctors (who actually have medical training, which you likely do not) and would already be symptom-free.
Do you think that we haven't tried many things to help our symptoms? Of course we have. But we have tried treatments recommended by our doctors who have full access to our medical records and know the complexity of our (often multiple) conditions, symptoms, possible allergies and intolerances, current medications and lifestyle. You know none of this, yet try and sell me some 'herbs' without any qualms over whether it could be dangerous for us. I'm guessing that doesn't matter to you as long as you get our cash though right?
OK, rant over! I tried to write this in a balanced way, but I guess I kind of failed 😅 I do truly mean it when I say that I am very grateful to the reputable companies that produce quality products that help us out. This is in no way a cuss against them.
The cuss is against the companies who not only produce problematic items, but deliberately prey on our pain and fears, and target us in an often very forceful way. I hope that stricter regulations come into force, but it seems that is a long way off just now. For now all we can do is vote with our dollar (or pound!) so-to-speak. Avoid the bad companies, block or report them and support those with high-quality products.