Why I Won't 'Just Try' Your 'Miracle Cure'
It’s one of those nearly universal experiences for those of us with chronic illness: we write an article, post something on social media, or talk about our conditions with friends, and the unsolicited advice comes piling in. It might be from friends or strangers. You might be told that your diagnosed illness is really something else, or that you should try some sort of diet, or that if you’d just think happy thoughts you’d get rid of your “illness attitudes” and be magically cured. We all know that most people who give this advice mean well, but it doesn’t mean it’s any easier to deal with. During the holiday season, when many of us might be interacting more with friends, families and current or former co-workers, the unsolicited advice might sprout like weeds.
I’ve learned to simply ignore unsolicited medical advice, regardless of if it comes from friends or strangers. Unfortunately, if you’re offered such advice and you respectfully decline, you’re sometimes faced with vociferous objections. Why won’t you just try it? You’re being mean! You can’t judge something until you’ve given it a shot!
My medical treatment is for me and my doctors to decide. I don’t owe anyone else an explanation about that. However, if you’re curious, here are seven reasons I will decline offered miracle cures.
1. The people pushing the “miracle cure” have questionable credentials.
Let’s be real about this: there are physicians out there with sterling credentials on paper who are terrible practitioners. The mere fact that someone graduated from medical school or has a science degree doesn’t mean that they’re good at what they do. At the same time, it’s a good first-line screening tool, and if someone has no verifiable credentials but is pushing a treatment or diet protocol, in my humble opinion, it’s questionable. Media appearances don’t mean anything, either: frankly, in this day and age, anyone can release a blog or YouTube series, design a slick-looking website or publish their own book. I expect the pilot of my plane to have a license; I expect the medical professionals with whom I deal to be licensed within their own fields.
2. The ingredients aren’t clear.
Very often, if you check the ingredients of that wonder product, you see the vague description, “proprietary blend.” They aren’t under FDA regulation and they are not required to disclose their contents. Hey, I get that they want to preserve their trade secrets, but the trouble is, I can’t trust that their top-secret-super-special formula won’t hurt me if I don’t know exactly what’s in it. No, I’m not going to take their word for it; I want the data. My illnesses, meds and allergies don’t play well with everything and I need to cross-check whatever I take for interactions.
3. The research data isn’t solid and/or available.
A lot of wonder products and treatments claim that they’re backed up by research, but when you actually check that assertion, you discover that the “research” is one commercial laboratory, which was hired by them and has not published their findings or released their data to other clinicians. You subsequently discover there’s absolutely zero independent peer-reviewed research or professional literature confirming the findings. Alternatively, the research you find actually refutes the company’s claims.
Why is this such a big deal? One of the tenets of the scientific method is reproducibility. In other words, to put it very simply, if Scientist A does an experiment and gets a specific outcome, Scientists B, C and D in different laboratories should be able to reproduce that result if they follow the same process. Scientists scrutinize and try to reproduce or build upon each others’ data all the time, and many professional journals require open exchange of information as a condition of publication. If a study won’t release its data, there‘s immediate suspicion as to the veracity of its conclusions.
4. There’s absolutely no mainstream backup.
Not every treatment option, hypothesis or theory is supported by every doctor or medical organization. Different countries have different care protocols. There are some very divisive opinions in the medical community on everything from mammogram scheduling to the role of opiates in pain management. There are “orphan” diseases, which are rare and only being treated and researched by a handful of clinicians around the world. There are others that are wildly misunderstood and, again, cannot be properly treated by every doctor you meet. Heck, there are still a lot of doctors out there that don’t believe certain chronic illnesses are real, even though they’ve been widely recognized.
The thing is, though, that even when there’s disagreement, there’s usually some mainstream, peer-reviewed recognition, even for more experimental treatments. There are usually also physicians or researchers who have no personal stake in the issue who have stated their professional opinions. For instance, if you check the literature about medical and cosmetic uses of Botox, you will find studies from different labs and universities all over the world that corroborate each other.
In the case of many miracle products, the only ones backing them up and solidly supporting their claims are the ones who are paid to do so. If you look for endorsement from major medical associations, patient advocacy groups, foundations and doctors who aren’t paid spokespeople of the product, you won’t find them.
5. It’s being touted as a “miracle cure.”
It can cure everything under the sun, and then some! While there are certainly real medications that are very versatile and are successfully used across numerous specialties, there’s never a claim that those drugs can magically fix everything that might be amiss with a person. Whether one’s dealing with conventional or alternative medicine, the claim that a specific product, diet or class can cure everything is an immediate red flag.
6. My illness isn’t a business opportunity for you.
If you read the comments on articles, blogs and Facebook posts about disability and chronic illness, 10 to one, you will find at least one person chiming in with their business pitch for some miracle product or book. It’s annoying when it comes from strangers; it evokes absolute rage when friends do it. Seriously, people. If someone you know is sick, your first thought should not be, “Oooh, new client!”
7. I already have doctors and a treatment protocol.
There’s sometimes a mindset among healthy people that if your doctors aren’t curing you, your treatment protocol must be lacking. Yes, sometimes that’s true if you have something that can be cured, such as strep throat or pneumonia, and sometimes there are legitimate concerns as to whether someone’s getting decent medical care from their providers.
However, chronic illnesses don’t often have cures. If we’re lucky, maybe there’s a solid protocol that will keep our illnesses under control. If not, we are looking at palliative care and stabilization – essentially, doing everything we can to treat existing symptoms, deal with new ones, and ensure that we don’t develop complications or progress. Often, palliative care might be lacking, too. Our conditions are also pretty wily, and often throw new things at us or break through the treatment that’s been working. Thus, if someone’s not getting better, or is getting worse, that doesn’t mean that they’re not getting the best care they possibly can or doing everything they can for their illness.
So yes, a loved one might be doing everything they possibly can and still be in a lot of pain, still have major symptoms and still be unable to function the way a healthy person can. That’s not a cue to push wonder cures at them. It’s a signal that they need compassion, understanding and support.
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