Let’s talk about the elephant in the room: the many “too good to be true” claims that seem to flourish within the online autoimmune wellness space.
After living with rheumatoid arthritis for twenty years, believe me, I truly want to believe that there is a cure or a “simple solution” that is *guaranteed* to make your disease go away or go into remission for good. However, as of the time of this writing, there simply isn’t (citation: American College of Rheumatology fact sheet for Rheumatoid Arthritis).
As a licensed occupational therapist, as well as an RA patient, I have a strong ethical obligation to help others avoid too-good-to-be-true scams, or programs that simply are unlikely to help them (or worse, actively harm them).
With ALL of that in mind, I created this series of “red flags” versus “green flags” for anyone who’s looking for a health provider, coach, or program to help them live better with their condition!
Look out for red flag words like “Cure, Eliminate, Guarantee”
Let’s go with the most obvious one first: promising a cure is a red flag because there is no cure for rheumatoid arthritis. According to the American College of Rheumatology website, retrieved August 2023: “RA is a chronic condition and there is no cure currently, however there are many ways to treat and manage symptoms.”
According to the American Medical Association’s Code of Medical Ethics: “A statement that a physician has cured or successfully treated a large number of cases involving a particular serious ailment is deceptive if it implies a certainty of result and creates unjustified and misleading expectations in prospective patients” (listed in OPINION 9.6.1, statement on Advertising and Publicity ).
Why is a “certainty of result” misleading or deceptive? Let’s take rheumatoid arthritis as an example: while there are evidence-based methods that are likely to reduce symptoms and control the disease, each person is different (especially when you factor in comorbid, or co-occurring conditions).
Following this logic, medical licensing boards and codes of ethics for health providers (from doctors to occupational therapists to nurses) advise that people avoid marketing guarantees as they are inherently deceptive / misleading due to the inherent unpredictability of health. Of course, the people often making the guarantees are not governed by any licensing boards – they are often self-appointed experts or self appointed health coaches.
With all of this in mind, I consider it a red flag when anyone guarantees that you will be able to “eliminate” any particular symptom, whether that’s pain, fatigue, inflammatory markers or deformities.
I know it’s frustrating to hear health providers seem to “hedge” their words, for example saying things like, “I don’t know for sure if this will work but I think it’s our best option.” When you are in pain and anxious about your health, you want to hear a guarantee because certainty is like an antidote to anxiety (at least for me!). However, a healthy dose of skepticism is warranted towards anyone who promises something that sounds too good to be true.
Green flags words to look for
The most simple way to turn a red flag statement like “My program will cure your rheumatoid arthritis” into a green flag statement is to use hedging words, or words that imply a gray area / some degree of uncertainty. Here are some examples:
- ““Rheumatoid Arthritis can be managed with (insert method here).”
- “My program will teach you tools that will likely / may / might help you reduce pain.”
- “With these methods, you can potentially reach remission.”
Red Flag: Exclusive Reliance upon Anecdotal Evidence
I consider it a red flag when someone says: “I am proof that this program works – it worked for me, therefore it will work for you!” or when someone exclusively relies on anecdotal evidence.
This is such a hard one, because stories have been shown in multiple studies to be more memorable than facts alone (citation: “Made to Stick,” Heath & Heath, 2007). Also, there is a legitimate role for case studies and anecdotal evidence alongside a larger body of evidence. We have to be very careful about making health related conclusions based on anecdotes alone.
Why? Because a program working for you (or your client) is only evidence that it works for you / your client, not me or anyone else necessarily. Even if two people have the same diagnosis, our bodies are different. Or, to take a more extreme example: I could do LeBron James’ workout program, but it won’t turn me into a basketball star!
This is why evidence-based data, preferably from large groups of randomly selected individuals is important. You also want to consider whether the person in the anecdote is even similar to you, or “representative” of your experience. A representative sample in statistics and scientific inquiry is one where the people the evidence is based upon “represent” you.
For example, let’s say you were diagnosed 30 years ago with severe RA, have a strong family history and are seropositive with “difficult to treat” RA. An anecdote from someone diagnosed 2 years ago with mild RA who is 20 years younger than you, who saw great results from an autoimmune program, is not likely to represent the kinds of results you might see from the same program. Put more simply: you want to compare apples to apples, not apples to oranges.
As always, the “devil is in the details.” To reflect on this personally: as someone who’s struggled with anxiety, I feel like there is no one in the world who wants the management of RA to be simple and black and white than me! However, I’d rather be armed with true knowledge and evidence than live in a dream world that is likely to crumble at some point because it’s not built upon a solid foundation of knowledge.
Green flag: A Willingness to back up Anecdotes with Additional Evidence
Put simply, a green flag to me when looking at autoimmune program claims is a willingness to back up anecdotes with scientific or unbiased evidence. You could take the earlier red flag statement and turn it into a green flag statement by saying: “My experience shows that this program can be effective, plus the program is backed by scientific evidence!”
Red flags and Green Flags in the Rheumatoid Arthritis space: Scare tactics around meds
Example of this red flag: “With my program you will get off of those scary medications, guaranteed!“
Why is this a red flag: Over 90% of patients with RA require medications (citation: Sparks, 2019 doi: 10.7326/AITC201901010) and many tolerate the medications well – I consider it a red flag when someone hawking a program / supplement refuses to acknowledge the role of medications in the treatment of the majority of people with RA (and I say this as an occupational therapist who objectively has a vested interest in non-pharmaceutical strategies as those are the ones directly in my scope of practice – in other words, I have the most to gain from these being the most effective methods / “better” than medications but based on the evidence I do not endorse this idea).
Additionally, as mentioned earlier any guarantees in general (whether it’s a guarantee that you will have a medication free remission or wean down on meds or some other guarantee of a specific medical result) is a red flag.
Turn this red flag into a green one:
“With my program, you may be able to reduce your reliance on medication through evidence based lifestyle modificationss;” in general, qualifier words like “may before claims of weaning off meds; Reduce rather than eliminate; Evidence based lifestyle methods.
Remember the Dunning-Kruger Effect:
The Dunning-Kruger effect is a scientific finding that the people with highest confidence sometimes have the least true knowledge. Be careful you are not learning from somewhere who has high confidence with only a small amount of true knowledge (doesn’t know what they don’t know). It’s most helpful to learn from someone who understands enough to “know what they don’t know,” or acknowledge the limitations of current knowledge in any arena, particularly inflammatory arthritis.
It’s another of these paradoxes: the expert is most likely to acknowledge they don’t have all the answers or use hedging words, which the untrained eye makes them look less confident than the person on the top of “mount stupid” who has a very small amount of knowledge but high confidence!
Bonus point: look at credentials of who is making the claim
One last point: it’s important to examine the credentials of the person writing the health related content, and whether they have a vested stake in what they’re saying. For example, does the person guiding you to take a supplement make a commission off that supplement, giving them a conflict of interest / potential inability to recommend that supplement in an unbiased manner? To counterbalance that example, when looking at randomized controlled trials, you would also want to consider who funded the study and who has something to gain from it.
To be a bit meta for a moment, I urge you to even take a skeptical eye to me, the author of this blog post: I offer a paid online course and group support program; while I make every effort to base my Rheum to THRIVE program in the current evidence for lifestyle methods to manage rheumatic disease, I acknowledge that there’s always the possibility that an existing bias of mine has made it into my general educational content.
Concluding thoughts
In the immortal words of Gloria Steinem, “The truth will set you free, but first it will piss you off.” The truth is that many well-meaning people in the autoimmune space make claims that they simply can’t back up, and as a patient, it’s in your best interest to take some time to become a red flag detective, or someone who can detect red flag words to save yourself from potentially wasting time, money, or (worse) your own health.
You cannot turn the clock back on permanent joint damage at this time, and I have seen too many people get led astray by “natural is better” or similar claims based in logical fallacies. I want to tell you it’s simple, but it’s not; I will tell you though that there are ways to cope better with these uncertainties and live a beautiful, full life despite there not being a cure for rheumatoid arthritis at this time!
Did I miss any red flags or green flags? What do you wish I had added? Let me know in the comments!
