Since the moment I first got sick the suggestions people gave me were unreal. The suggestions began with “just needing to pray harder” and gradually made their way to biofeedback, grounding, crystals, supplements, and more. I honestly am not sure which was worse, but I do know that suggestions and trying alternative medicine have only made a hard life with chronic illness harder.
1. The Patient Gets Blamed When a Treatment Doesn’t Work
When a doctor gives me a medication and it doesn’t work I don’t get blamed for the failure. However, when I try an alternate medicine I nearly always do get blamed for the failure. When it was biofeedback, I wasn’t trying hard enough or practicing enough. When it was acupuncture, I wasn’t trying to relax hard enough. Even with supplements, I just hadn’t waited long enough for the benefits (no matter how long I waited).
It is hard enough to be blamed for a treatment not working when you are trying your best. It is even worse when this attitude gets perpetuated beyond your treatment and into the rest of your life. Sometimes when I tell people the conditions I have I get the response “Well are you trying _____” (Insert any alternative medical treatment). Sometimes it is implied and sometimes it is explicit but the underlying question is always there- why aren’t you trying everything you can?
The reality is that people with chronic illnesses don’t owe it to anyone to try treatments not verified by science. The attitude that we aren’t trying hard enough when we don’t try whatever alternative treatment is hurting people. It has kept me from getting the support I need from my friends and family- I was never trying hard enough to get better so in their eyes I didn’t deserve their support.
2. Alternative Medicine Is Dangerous
There are many reasons using treatments only verified by science is so important. One reason is safety of a treatment is verified. The treatments benefits must outway the risks for it to go to market. However, alternative medicine doesn’t need to go through the same thorough screening. People with pre-existing conditions can be the most endangered by this lack of safety.
For example, supplements often aren’t what they say they are. This can cause medications interactions and other problems- especially in people who already aren’t healthy. Chiropracty and acupuncture have their own dangers too. Chiropracty has been linked to strokes and acupuncture to puncturing organs.
I often hear “But it is natural so it is safe” or “I don’t want to put all those drugs in my body- I prefer natural treatment.” What so many people fail to realize is that natural does not mean safe.
So many natural things in this world are dangerous- berries, mushrooms, and poison ivy for start. The thing is so many of the medications on the market come from nature and have been improved upon so they are safer and more effective. One example is aspirin, which initially comes from willow bark. There are dangers from the completely natural willow bark and aspirin the same. The difference is aspirin has been tested and put into the safe, same dose in every bottle with dosing specifications included. The risks are assessed and addressed whereas natural products usually only claim they are natural and the public assumes that means safe and doesn’t question the risks of the treatment further.
Alternative medicine profits off people with chronic illnesses. I’m not going to try and argue that “big pharma” doesn’t profit off us being sick as well. However, when we pay for medication we are paying for something that has been proven to be effective at least some of the time. With good insurance, these treatments are likely to be at least partially covered. With alternative med people pay, and they pay big, for something that has not been proven to help with their condition- or any condition at all.
People with chronic illnesses already have to deal with crippling medical debt and are just desperate enough to try anything- any crazy alternative medicine no matter how small the chance there it has of actually helping them. People know this and they benefit off of it. They take advantage of the desperate.
4. It Assumes Laymen Know More Than Doctors
There is a reason we should only trust medical professionals to treat medical conditions. The human body is infinitely complex and so many things can go wrong. Doctors and pharmacists spend a large chunk of their lives in school learning how to treat patients better and minimize risks. But alternative medicine professionals? Anyone can become one. They don’t have to know much about the human body or even anything about the condition they claim they can help with.
5. Patients End up Constantly Chasing Hope All The Time
Having a hope certainly isn’t a bad thing. Having false hope in a treatment that will cost you hundreds, if not thousands, and let you down is a bad thing. A lot of people with incurable, chronic illnesses, if not all, go through a time similar to the bargaining stage of grief. They try anything- no matter how slim of a chance it has of working. Alternative medicine con men know this and they take advantage of it. They promise cures to our chronic conditions. They are in the business of selling false hope.
False hope hurts. Putting 50+ hours into biofeedback that claimed to cure (or hugely improve) my POTS and getting so little out of it. I was crushed by letting myself hope I could get better and then continuing to be sick no matter how hard I tried. The biofeedback technician blamed me; I blamed me. Even worse, my loved ones bought the false claims the biofeedback technician made. And when I wasn’t cured? They blamed me too. It was one of the darkest times of my life. The disappointment consumed me.
6. It Claims To Fix You, Not To Manage Symptoms
Trumped up claims of efficacy are a hallmark of alternative medicine. All the medications from a true doctor I took only claimed to possibly manage the symptoms of my conditions. However, alternative medicine practitioners claimed that they could cure my incurable illness or basically make all the symptoms disappear.
My conditions are incurable. Cutting out gluten, doing biofeedback nonstop, becoming vegan, yoga, walking, crystals, needles, etc. is not going to make an incurable illness curable. If the cure was truly found actual scientists and medical professionals would be all over it. Alternative medicine conmen making these outlandish claims produces false hope, keeps people from learning to live with their conditions, and makes conditions harder to understand. That leads me to our next point.
7. Pseudo-experts Make Understanding Conditions Harder
Education on conditions is important to people being supportive. When alternative medicine conmen enter the conversation they dilute the available information with false claims rather than facts. This makes the condition more difficult to understand for the patient, medical professionals, and loved ones. Pseudoscience, therefore, makes the lives of patients much more difficult.
For example, I have had doctors tell me that my conditions would be cured by cutting out inflammatory foods. This diet has no evidence to back it up but somehow made it into my doctor’s education on my conditions. Getting suggestions that indicate a fundamental misunderstanding of my condition (that it is incurable) is frustrating and disheartening.
For other examples, you only have to look as far as support groups. There is so much pseudoscience and misinformation that many patients don’t even understand the basics of their condition.
8. Alternative Medicine Simply Does Not Work
There have been many studies into alternative medicine and the results are conclusive- alternative medicine simply does not work. There is a common joke in the science community: What do you call alternative medicine that works? Real medicine.
So before you consider the next random treatment suggested to you- check it out first. Is there any good evidence that it helps people with your condition? Is it worth the money, the false hope, the risk, or the blame you will likely receive when it fails?
Such a great post. Please fix the headline. Chronic, not chronically.
Absolutely brilliant post! Anyone with a chronic illness only needs to look on some of the “health forums” to see the pseudoscientific attitudes at work – one common theme is, “I know more than the doctors do.” Good goddess, I would hope that after all that medical school and internship that my doctor would know a heck of a lot more than I do! It’s a form of “reverse snobbery”, the idea that somehow a person would just “intuitively know” about medicine and diseases, and that there is something inherently wrong (or stupid) with people who go to medical school. Cyberchondriacs and pseudoscientific forum posters are particular pet peeves of mine.
Anyway, your blog post is to the point, thorough, and wonderfully frank. Really enjoyed reading it!
What about the PACE trial? Ruthless peer review? No. Willingness to change with new evidence? No. Doctors who know about the problems of the trial. No. I think I’ll stick with what helps…just a bit….for me. I think both conventional and alternative medicine for ME have similar problems. No worthwhile tested evidence, no peer review etc.
Not really sure why your reply ended up under my statement, but ok. You are citing ONE article in Lancet about ME, and generalizing that to mean that no medical interventions are based on sound science and none are peer reviewed. That’s simply not something you can conclude from one study. It is standard practice in scientific journals to peer review all submissions, and these are performed by other scientists/researchers who judge the article on the basis of scientific standards.
If there is no evidence-based conventional treatment for ME, as you state, this does not then mean that alternative medicine is any better. It’s frustrating to have a condition that appears to be misunderstood by many doctors, or outright dismissed by some, but all that means is that researchers have not made as much headway as they would have liked. This is often the case for people who cannot find any diagnosis for their illness, yet no one – not even most doctors – would dismiss these patients as not being ill, or making it all up, etc. The problem with alternative medicine is that, in general, there are no peer-reviewed studies to back up their claims. All they usually cite is personal experience, and that’s not science.
Great post! Thank you for saying aloud what a lot of us, with chronicle illnesses, think and feel!
I’ve been living with psoriasis for as long as I can remember myself. My parents, being good people who don’t want to see their child suffering when something can be done about it, took me to an infinite amount of alternative “doctors”.
While I don’t know the amount of money they spent on it (pretty sure it was very expensive, sadly), I do remember those sad viscous cycles. First, you’re being led to believe that there is a cure, or there’s something wrong that you’re doing which is causing it. Then, going through weeks of false hope, spending a lot of time and efforts on remedies, diets or what ever it is that they’re selling you this time. Then comes the worse part, which is the sad feeling that you get when you realize that it is not working. It is a mixture of despair and guilt thinking that it must be you that are broken, or that it is because of something bad that you are doing (mostly not trying hard enough).
It took me years of guilt and feeling broken (together with adolescence it wasn’t a nice sight), before growing up to understand what you wrote so nicely in you’re article. With a lot of support from my spouse and after years of despair, I finally learned that I am not broken, just chronically sick, and it is not my fault, just like you are not to blame for the color of your eyes. I even went back to going to doctors for my illness (real doctors that actually helped me) after years of being afraid of them, and although they cannot (and do not claim to) “fix” me, they do a great deal with helping my symptoms and making my illness manageable.
I think that the most important message for me is that the false hope that alternative medicine gives you – of being able to cure you completely, is harmful and dangerous, as it undermines your chance of doing two things that are crucial for being able to live with a chronicle illness. The first is acceptance – accepting that you have a disease, and that your illness does not define you, not are you to blame for it, it is just a part of your life that you have to learn to live with. The second is real help (the one you get from doctors and real medicine) with managing the symptoms of your disease so that you could live with it more easily.
In conclusion, thank you for stating that chronic illness is hard enough without the guilt and dangerous false hope that alternative medicine spreads.
There is a difference between managing and curing a chronic condition. My daughter has Chronic Fatigue Syndrome (CFS) and I have psoriasis, like the contributor above, SivankeS. Drs have been very helpful in managing the symptoms of psoriasis, but over decades have never tried to address the cause or trigger.
Learning ‘alternative’ techniques to manage stress and thereby reduce the adrenaline that my consultant informs me triggers psoriasis, I have found to help greatly. Having also established that eating food you are intolerant to triggers the body to produce adrenaline as part of the way it copes, infers that avoiding these foods and therefore removing this further adrenaline trigger can also assist in the management of the condition. I have found this to be the case and am therefore using this alternative approach. It is true that I have chosen a more scientific approach to establishing intolerance than is commonly offered, by having it done by blood sample showing a reaction in antibodies to certain foods.
Taking a similar view with CFS, using scientific evidence as far as possible, there are techniques that help to manage the condition that fall under the category of alternative medicine. My daughter is finding that such approaches can assist. To completely rule out all forms of alternative medicine on principle seems to me to rule out some helpful approaches and techniques that can help to manage a chronic condition, even if they cannot cure it.
The work we are currently doing with a nutritionist that has included mitochondrial testing has been an incredible step forward in my daughter’s recovery. Without this alternative approach we would not have established these facts. But again it is the link between an alternative approach and scientific fact that is being a key for us.
The article above by Emily Coday rules out any use of alternative techniques as giving false hope. I agree that there needs to be great caution about claims of curing a chronic condition and certainly avoiding any blame on the sufferer because a technique does not work. However, chosen carefully and whilst working with the medical profession, I consider that alternative approaches in the form of sound nutritional advice, testing and support as well as psychological techniques can bring hope and can help to manage chronic conditions.
What a great post, a little close to Tim Minchin’s beat poem, “Storm”, but that’s no bad thing!
Supplementary, Complementary, and Alternative Medicine (SCAM).
this is a really good article. My rheumatologist is against alternative medicine as there is nothing like the fda to do some kind of monitoring. He told me about a study going aroundthe chinese medine shops and bought the same weight of ginseng,but when they tested for the strength they were all different. Though there is someone I believe is coming into the new goverment who believes that people should take the meds first and then send them to the fda!
This is such a fantastic, honest post. I’ve shared it with my readers and hope we are able to connect and keep in touch. 🙂
Great article, thank you. I’m all in favour of trying all sorts of approaches. However, this all too often involves throwing away decades of good sense, research and experience in favour of some pseudo mystical woo or anti-science mumbo jumbo. Keep an open mind; but not so open your brain falls out.
“Keep an open mind; but not so open your brain falls out.”
Haha, I like it!