8 Ways Alternative Medicine Hurts Those of Us With Chronic Illnesses

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.

3. Costs

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?

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You Don’t Owe It To Anyone To Try Every Treatment

Two weeks ago I went in for an injection in my back. The doctor, instead of being focused on my pain and comfort, decided to use me seeing him as a platform to push alternative medicine on me. By the end of my time with him I was sobbing because I was so frustrated from not being heard. Since then I’ve come to the realization that I don’t owe it to anyone to try a treatment especially one that has not been backed up by science. I will no longer accept health care “professionals” who are judgmental about me not trying hard enough to cure myself.

In the beginning, 8 long years ago, when I first got really sick I tried everything. Every possibility of improvement I jumped on. Every time I got my hopes up and had them crushed again and again. As if that disappointment wasn’t enough, when these things didn’t make me feel all the way better it was always my fault. I must have not been following the diet close enough. I wasn’t practicing hard enough. No one considered the possibility that the treatment, one that hadn’t been verified as successful, just didn’t work.

When alternative medicine gets pushed on patients it is the patients that get hurt. Dealing with having your hopes crushed over and over is hard enough. Dealing both with that and with feelings of inadequacy when you are trying your best is even worse. In real medicine, if someone takes their meds and they don’t work they don’t get blamed for not trying hard enough. When one blood thinner doesn’t work me don’t blame the patient for not trying hard enough to thin their blood; instead the dosage is adjusted or a different medication is used. Real medical professions realize that medications and treatments work differently for different people.

You can bet I will be writing more on the subject, but here are some ridiculous highlights that came from my surgeon:

“Just try an anti inflammatory diet. I did and I feel like I’m 21 again!”

Talking to someone who has been in a ridiculous amount of pain since they were 18 about how you felt 21 is insensitive. Youth does not always mean health.

 

“You’ll lose 21 pounds in 21 days.”

What are you an infomercial?!

 

“Inflammation is the cause of all your problems; you just need to cut it out.”

Actually, my genes cause all my problems. No diet will change that. Also, inflammation is not always a bad thing. It helps us heal, it lets us know when there is a problem. Saying an anti-inflammatory diet will fix everything is oversimplifying things. Didn’t you go to medical school?! Or we using “doctor” in a looser sense?

 

“Do you eat gluten? You haven’t cut it out. That is your problem.”

I have cut it out. I tried that. Do you think you’re the first person to tell you that? Cutting out gluten is not the solution to everything.

 

“People drive from Kansas just to get this list, but I’m going to give it to you for free.”

Great a list of potentially dangerous supplements and unwarranted “medical” advice. My favorite.

 

“Actually there is an entire edition of a journal dedicated to this.”

Yes, there are articles in academic journals about anti-inflammatory diets. They are written by chiropractors and nurses who monetarily profit from people trying anti-inflammatory diets. There is almost no information on any actual science behind it from credible sources. Just because the article is in an academic journal doesn’t mean it is reliable.

 

“You need to get off opiates.”

He said this one to me as I was sobbing in pain in front of him. He is not the doctor that manages them, it was not his business. He also said this after telling me that the nerve in my back was pinched and asking if I had surgery scheduled. When someone dislocates their shoulder they are given opiates. EDSers deal with that pain daily all of their body, but then are judged for needing pain relief. I haven’t slept a good nights sleep in four months due to pain, but yes I’ll stop opiates right away.

 

“You need to try biofeedback.”

I have. I even use some techniques for relaxation, but it didn’t cure me.

 

“You just didn’t see a good one.”

I saw one who is an expert to my condition.

 

“You have to practice more.”

I was practicing even more than they recommended. I tried at it. I really did, but when alternative medicine fails it is always the fault of the patient- not the alternative medicine.

 

“I treat people with EDS all the time.”

He had no understanding of EDS, prescribed me muscle relaxers (contraindicated to EDS), and obviously had no grasp of the condition. I really hope he was lying here and that no one with my condition has had to deal with his ignorance.

 

“Just try what the doctor is recommending.”

This one came from the judgmental nurse on staff. She said this after the doctor was done spewing his pseudoscience and after I had already said that I had done the research and there wasn’t science to back it up AND that I couldn’t eat most of what is in their proposed diet. Chronically ill people don’t deserve to be shamed for not trying things that are not backed by science.
Life with a chronic illness is hard enough. We don’t deserve to be harassed by people for not trying a treatment. I’m not saying that all alternative medicine is evil. For example, massage has helped me wonderfully. What I am saying is that people with chronic illnesses do not deserve to be harassed or judged for not trying hard enough for not trying every treatment under the sun. 

Sunday Skeptism: Rethinking Essential Oils

Having a chronic illness that has no cure and only a little research often makes someone vulnerable to try anything once. Some people pray off of that vulnerability and try to market “natural” products. These people take advantage of the poor science education most of America receives by making their claims sound scientific. They usually aren’t. In the case of essential oils? The claims are definitely not scientific.

Now I will admit I have received “aromatherapy” during a massage and it was nice and relaxing. I am not saying essential oils and aromatherapy are even a bad thing if you just are using them because you want to smell something nice. The problem I do have with essential oils is the medical claims being made.

Essential Oils
Essential oils and aromatherapy claim that oil extracted from plants treat all sorts of conditions and symptoms. There is no denying that some plants do have uses, we have some medicines from plants that  have medicinal properties. For example, aspirin is from the willow tree.The majority of these claims about these plants have no merit.

If you want to take a look at some of the absurd claims these companies make go here. Not only are these claims not backed by science, but they can actually be dangerous. Take a look at the chart below which actually suggests different essential oils are alternatives to certain medicines. Following this chart instead of your doctor’s advice could be deadly.

Claim: Essential oils are a safe an effective replacement for modern medicine.

The process to have a drug approved by the FDA is long and involved. Essential oils avoid this process by hiding under claims of it being “alternative medicine.” Like most alternative medicine there aren’t many quality scientific studies showing their effectiveness. Essential oil companies don’t even have to prove what they claim is in their product in their product. They aren’t pressured to provide scientific evidence proving the claims they make about these essential oils.

Claim: Essential oils are safe and natural.

In reality, natural is not always better. People seem to be convinced that there are less risks with natural products. This assumption is not necessarily true and can cause people to overlook the risks associated with these natural products. For example, essential oils can interact with medications, burn your skin, cause allergic reactions, and may be deadly if ingested.

Claim: Tea Tree Oil has been suggested to have antimicrobial and ant-inflammatory properties.

There is a small amount of science to back up this specific claim and this is the only claim I researched with any merit. However, these properties haven’t been observed in the human body and are quite weak. More research needs to be done before I rush out and buy tea tree oil.

The Cost

Each tiny bottle may cost as much as $20 and a “Family Physician Kit” costs $113. If your doctor uses these you may want to see a better doctor. Essential oils claim different properties for each type people are often sucked in and end up with dozens of these overpriced essential oils. It can become a really expensive “treatment” very quickly.

Many people claim that essential oils do help them and I’m not going to insist they listen to science and stop using them. However, do not replace medical treatment with Essential Oils! Maybe just enjoy them for what they are instead of buying into false claims. After all, they can smell pretty dang good.

I understand wanting to try everything in hopes that you might feel a little better. I really do. However, these “therapies” won’t help and may even hurt you. Don’t fall for their tricks or let them take advantage of you. Oh and never trust Mercola.

Coming Soon:
8/30- Essential Oils

Sunday Skeptism: Grounding/ Earthing

Having a chronic illness that has no cure and only a little research often makes people vulnerable to try nearly anything once. As a result, some scam artists prey off of that vulnerability and try to market products that do absolutely nothing or very little. Each Sunday I will investigate a treatment- do their claims lay in science or if they are taking advantage of people?

Science In This Article

Placebo effect– The effect that occurs when a patient takes a treatment and sees a positive result just because they are being treated. The result may happen even if the patient knows it is the placebo.
Blinded- The best studies are blinded. This means that the observer and researcher do not know which group is receiving treatment and which is not. Blind studies ensure that the researcher does not tamper with the results or give any subconscious bias while administering the test.
Electrons- Electrons are tiny negatively charged subatomic particles.
Grounding (electricity)- In electricity, the purpose of grounding is to reduce the risk of electrical shock and discharge static electricity.
Cortisol- Cortisol is called the “stress hormone” and is created in times of stress.

It Looks Like Science

Grounding is the process of going barefoot or making direct contact with the earth in order to access the earth’s “healing energy” in the form of electrons. Earthing and grounding are used interchangeably. Beyond this, earthing and grounding “experts” cannot even define their terms consistently. Some enthusiasts claim grounding is absorbing the electrons from the earth. Other enthusiasts sell mats and protective (from the electrons given off by the earth) coverings for your car, sleeping bag, carpet etc.
Grounding splits into two fields of focus. One focuses on contact with the actual earth which I see as the less harmful of the two because there is less money to lose. The other focus in grounding is on electrons on any surface and how to protect the body (probably because they make more money this way).

When you read about the claims by grounding enthusiasts they tend to throw around some scientific words that can be quite convincing. However, the science is either nonsense or claimed as fact without any proof. Grounding enthusiasts claim grounding creates a more stable bio-electrical environment within our bodies. Is there anything to prove it?

Not-So-Scientific Claims

This is the story that was posted that lead me to making this post. I have many problems with this article and they begin before grounding even comes up.

Claim:”it is a recognized scientific fact that if a human baby is not held, hugged and touched enough, it will literally stop growing.”
Not only does this have nothing to do with grounding, but it is also untrue. This is the article they are referring to. The article clearly states that there is a link between brain development and human touch, nothing about suddenly not growing. The article makes it clear early on they don’t care about scientific integrity right off the bat and goes downhill.

The article shows promise when it starts mentioning scientific studies, but upon further inspection they aren’t very scientific studies.
Claim: “The study concluded that Earthing resynchronized levels of cortisol within the body”
Grounders claim that cortisol levels prove grounding helps. Researchers did see a decrease in cortisol levels after grounding, but likely not for the reasons they claim. It is likely these results come from placebo effect or report bias alone.

Claim: The studies also claim that patients using a grounding mat reported improved sleep, calm, and insomnia. Again, without a control group it is unlikely that the results were more than placebo effect.

In addition, the studies were not blinded. Blind studies ensure that the researcher does not tamper with the results or give any subconscious bias while administering the test. That makes the results less valuable. Not all scientific- looking articles are actually science.

There are known benefits to being outside and connecting to nature. Many people find reconnecting with nature relaxing and rejuvenating, but claiming a handful of health problems are cured by grounding is taking advantage of the vulnerable.

They Will Take Your Money & A Lot Of It

This glorified sleeping bag plugs into the wall and costs $259.99, but of course you can’t get just that. You also have to get a “continuity checker.” These companies are taking advantage of the average person not understanding electricity and electrons. They sell voltmeters as if they need to be especially for grounding.

They Claim The Benefits Of Being Outside Are All From Grounding

Reconnecting with nature works to lower stress in many people, and the grounding craze appeals to this. Sometimes walking outside barefoot is nice and relaxing. Grounders claim that all the good feelings that come from being outside are actually from grounding. They claim that grounding helps, some even claims it cures, basically all illness and sell extremely overpriced junk to desperate people.

If you still aren’t convinced grounding doesn’t work and want to try grounding for yourself I suggest you do not buy any of their “grounding” products. Try it for free at your favorite park.