Friday, May 23, 2014

My Response to my XOJane Article--or Why I Don't Support Stores that Claim to Cure Diseases and Defence of Diet Coke

As many of you are aware, I recently wrote an article for the site XO Jane about living with lupus SLE, specifically about the unsolicited advice you often receive. What I am focused on in this article is the diet shaming that seems to happen. There is often a belief that if you eat xyz, you're going to be cured or wouldn't have had lupus in the first place (I neglected to mention that one theory is that lupus is a build up of toxins from years of a bad diet).

The thing is, in theory, I'm not against diets to help you improve your health. I agree with the general consensus that it probably isn't healthy to be morbidly obese, that sugar in excess likely makes you feel rotten and processed foods aren't really the best thing in the world to put down your pie-hole. I think eating is extremely personal and finding the best diet for you is really what it's all about. Besides that, if someone is doing something massively unhealthy for their body, it is ultimately their business and not yours. Yes, it may validate your own life choices for you for a minute to shame them for eating too much fat or gluten or whatever, but it doesn't do much in the long run but make that person feel badly about themselves.

Cured vs. Alleviated--Why Wording is Important

You'll see in the XO Jane article that a certain company (which I will not name) posted on the UK site in the comments section (they have since removed their company name and it appears as Guest...I'm not sure if this is in embarrassment or because they were asked to do so by XO Jane) telling me that a British comedian has cured herself of lupus with a natural, raw diet. The company representative also shames me for drinking Diet Coke.

There are two issues I have with this. Firstly, the woman in question explicitly states in the article linked to that she has not been cured but has been able to put her disease into a state of remission. She still has symptoms. Whether the diet put her in remission or she would have been in remission anyway is not the point, but rather that autoimmune diseases are characterized by their periods of remission and activity. Just because a blood draw comes back without antibodies does not mean that you are now cured. You can go years without symptoms, which is awesome!, but there is always a chance it will come back. Whether you go years without symptoms due to a diet or medicine, it is still pretty cool if you can do that. BUT, I feel this company is spreading misinformation about the ability to cure a disease that is incurable. Alleviated her symptoms? Yes. Cured? No. Two very distinct things!

In Defence (Defense--living in the UK has really marred my spelling) of Diet Coke

Then there is the whole Diet Coke thing. It's almost as if Diet Coke has become the new cigarettes. If you publicly drink Diet Coke habitually, I am sure you have been shamed more than once for doing it. It is bad for you, it is the cause of lupus, it is the cause of everything horrible in your life, you're going to get cancer, etc.

Now, let's examine why people think they are justified in saying this. If you Google "Diet Coke bad for you," you'll come across a ton of media outlets that will cite studies claiming Diet Coke causes horrible diseases, that aspartame is secretly killing you, that it makes you obese, etc. You may think, "That's legit if ABC News reported it! Stop right now and shame everyone who drinks it in the name of education!"

However, there is more to it than meets the eye. Firstly, the National Institute of Health reports that the obesity claim just doesn't hold water. Research done shows that obese people who consume Diet Coke find their excess calories elsewhere, thus making them obese. The simple act of drinking Diet Coke does not cause obesity.

You can also read that jury is still out on stroke risk and Diet Coke, there is no hard evidence connecting aspartame to cancer. I also read a study, but cannot find the link again, that stated that the evidence they found that Diet Coke causes harm was inconclusive and not statistically significant and that those who ran the study were surprised media outlets picked it up so quickly and ran with it. A new study by the University of Iowa is being reported to spell the end of Diet Coke because of its link to heart problems, but if it is actually read, they clearly state there is not a causation and people cannot yet jump to conclusions.

Diet Coke, however MAY cause kidney issues, but drinking it in moderation is okay.

Selling "Natural" Products and the Promotion of Diets

There are two reasons why I dislike the promotion of diets. One is that it allows the person who believes his or her current diet has magical powers to shame someone else for not following their paleo/vegan/natural/whatever diet. It causes unnecessary judgement and there hasn't really been any scientific data to back up these claims, most are just anecdotal. If there is a study (NOT sponsored by someone like Robb Wolf--the paleo dude) then please point it in my direction. The Hospital for Special Surgery (where I used to be treated in the US) has gone on record saying there is no food that causes lupus, but it is important to make good nutritional choices (as it is for everyone). Although there are some specific foods that cause inflammation (i.e. alfalfa sprouts, nightshade vegetables, high in fat dairy).

The second reason I dislike the promotion of diets and products (after I had my article published, I was contacted by two companies who wanted me to try their gel and nutrition shake respectively) is that it is using people's vulnerability for monetary gain, particularly the newly diagnosed. When you all of the sudden cannot do the things you used to due to painful inflammation or increased fatigue, it is really, really scary. You want to do anything to get your life back, so you'll buy anything. This is where scammers and profiteers come in, even if they don't know they are scamming. Many people have good intentions, but they don't really know much about the diseases the are professing to cure or treat. Thus, they may be advising something that interacts with medication, causes more inflammation or does more harm than good. According to Hospital for Special Surgery, a diet like the paleo diet would not be recommended for lupus patients because some of the paleo staples are known to cause inflammation.

How do diets profiteer off of vulnerable people? Easily. Books. CDs. Documentaries. Lecture series that cost money to attend.

In the end, it is your body. Eating healthy is important for everyone, but don't allow people to make you feel guilty for your food choices. And if you have an autoimmune disorder, listen to professionals in their field. I'm not saying all doctors have all of the answers (I've dealt with some real assholes and have switched doctors numerous times), but you also have to listen to reason. Dr. Everett of Hospital for Special Surgery states that "natural" does not mean "good for you" or "safe." After all, some poisons are natural, aren't they?

My YouTube Video Telling My Partial Lupus Story

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