Advice on Advice

A lot of people have given me advice. Advice on life, on art, music, relationships, directions, food, money, writing, and mostly health. Humans have always had an unhealthy (ha ha) obsession with our own well-being. Health has become an industry, a culture, a trend! There’s always a new superfood. Or diet. Or workout. Or a new way of doing things. New new new. All the time. And then there are traditional cures, homeopathic remedies handed down from generation to generation; recipes people swear by to alleviate cold or flu symptoms. The list goes on. With the rise of social media and online bloggers (guilty!), it’s become harder and harder to find the legitimate options in the growing pile of resources. On top of this, a majority of self-help remedies are concocted by people who have no real verification for their claims. There’s a reason the FDA makes it so hard to get anything approved. Research is expensive and time-consuming. So how in the world do we fix ourselves?

A disclaimer: giving medical advice is actually illegal. It’s called the Unauthorized Practice of Medicine. This prohibition exists as a precaution against people who try to treat others without real medical training, because they may be using unproven methods which could hurt or even kill people they advise. Advice may be defined as “the practice of medicine when the advice is specific to a particular person’s illness or injury” (from healthcare.findlaw.com). Please keep this in mind.

As someone with a super-rare auto-inflammatory illness, I wholeheartedly support experimentation. Heck, all my medications are experimental in nature. Why? Because my disease is so so so so so so (I could go on forever) under-researched. There are only a few specialists in the world who even write about CRMO, let alone dedicate time, energy, and money into studying it. So, I have become a human guinea pig.

HOWEVER, I am a huge skeptic when it comes to the world of DIY and self-help. Some might call me cynical. But here’s the thing. Often the very people who promise these health transformations are NOT ACTUALLY SICK. Someone dealing with chronic or terminal illness deals with a very different type of sickness-one that doesn’t go away… Because… it’s chronic. Hence the title. Chronic illness. We are not as lucky as many of the bloggers and Instagram queens who rave about juice cleanses and vitamin supplements as the cure-all for every problem. They’re privileged and advising people who aren’t actually dealing with illness and it’s honestly a manipulative or deceiving thing for many who are desperately seeking help for serious health issues. I’ve seen many fall victim to expensive “detoxes” who find out very quickly that their condition isn’t going to improve just because they’ve liquified their fruits and veggies. Sometimes they even find that they become more sick because of their new diet regimen. So, I’d like to clear some things up and talk about what’s really up with juicing/detoxification and what actually helps me (someone who cannot currently be cured).

LET’S BUST SOME MYTHS.

  1. Detox” is a catchy word used to describe something your liver already does. Remember how doctors used to use leeches to suck out “poisons” in people’s bodies? Same idea. There was never any poison to suck. And leeches are an unnecessary, nasty option. From a NY Times article: “People are interested in this so-called detoxification, but when I ask them what they are trying to get rid of, they aren’t really sure,” said Dr. James H. Grendell, the chief of the division of gastroenterology, hepatology and nutrition at Winthrop-University Hospital in Mineola, N.Y. “I’ve yet to find someone who has specified a toxin they were hoping to be spared.” In summary, our bodies are well-equipped to handle actual toxins (think pesticides, lead, antifreeze, or alcohol/medications in large quantities). The kidneys and liver work to draw toxins out of the bloodstream and process them so that we can pee (or poop) them out safely. So when brands say that their products will serve as a detox for your system, they’re really just being misleading. Brands or influencers who promise detoxification via juicing in particular are guilty of deceptive advertising.
  2. Juice Cleanses. Calling you out. I’ve had lots of people (very sweet, genuine people) tell me I’d benefit from a “cleanse.” If you’ve tried juicing and it’s worked for you, that’s great news. But if you’re already healthy, it comes off differently when you tell me that these ($6 a bottle WHAT) juices will make my body feel great. Juicing does make it easy for many to eat (or drink) their fruits and vegetables, which contain nutrients that help the liver process toxins. So that’s a benefit. But truth is, if the juice isn’t thick (pulpy), it probably has lost some fiber and nutrients because of the juicing process. And fiber is a really, really important component of a fruit or vegetable, and helps your digestive system function properly. For those considering cleanses, please read below.

Juice Cleanse Risks (taken from the National Center for Complementary and Integrative Health):

  • Juices that haven’t been treated to kill harmful bacteria (think pasteurized) can make you sick. Kids, seniors, and those with compromised immune systems are at higher risk.
  • Some juices have high concentrations of oxalate (a naturally occurring molecule), which can worsen kidney problems in people with kidney disease.
  • Juice diets that restrict calories usually don’t lead to lasting weight loss and often don’t provide all the nutrients needed.
  • Fasting can cause headaches, fainting, weakness, dehydration, and hunger pangs. Detoxification programs can sometimes include laxatives, which can cause diarrhea severe enough to lead to dehydration and electrolyte imbalances.

In summary, it’s important to know the risks before blindly taking medical or health-related advice. There are so many people advocating for detoxification programs and so little scientific research proving these programs effective. Plus, my roommate had to do a five day juice cleanse for work and honestly hated her life after day 2. She missed real food that much. Generally, I’d advise against any all liquid diet because of the risks associated. I generally feel really sick if I don’t eat solid food; my digestive system needs solids to work properly. So, no on the juice thing. It’s important to recognize that juice can also contain large amounts of sugar, which has inflammatory properties. Again, a big no for those with auto inflammatory diseases. Also, other “superfoods” are oftentimes untested and labeled improperly due to the lack of FDA testing and oversight. People can get hurt because of potentially dangerous supplements and misleading labels. For example, tumeric is a widely-used supplement which can reduce inflammation. However, it also had blood-thinning qualities and I personally know of people who have had serious health issues as a result of taking tumeric. So it’s important to do your research before trying anything new.

REAL WORDS FROM A REAL SICK PERSON:

  1. It’s (seriously) not legal for someone to advise on medical treatment. Hence my giant disclaimer earlier in this post. Please don’t tell someone how to take care of themselves unless you are properly qualified. It’s fine to offer insight or to share experiences but advising is a no-no.
  2. My disease causes me to hurt a lot of the time. Its chronic nature means that it might never go away. What can go away are the mental issues I face as a result of battling pain constantly (think depression, anxiety, frustration, anger, etc). I recognize that I have these negative feelings. Doing this helps me figure out my plans to overcome them.
  3. Animals are some of the best cures for sadness. I have two dogs and watching a video of one of them struggling to run with booties on is a great (and quick) pick-me-up. I also have horses and being around them is like therapy. They don’t care when I’m angry at my bones for feeling like they’re being pulled from their sockets. They just care about their heads being scratched. And treats. Being around my animals helps me release from the pressures of being social (which is tiring when you don’t feel well).
  4. Just because I don’t believe in juice cleanses doesn’t mean I don’t like juice! As a supplement or a snack between meals, juice is a tasty way to get nutrients from loads of fruits and veggies without chomping on carrots for hours. And those nutrients make me feel good. Eating well feels good.
  5. Eating ice cream feels good too (mentally). I’m a huge fan of Ben & Jerry’s. I have a sweet tooth and am not ashamed to admit that I often reward myself with chocolate or ice cream. When my body sucks, my mind can at least obsess over how goooooood this chocolate chip cookie dough ice cream is. It’s the little pleasures.
  6. REWARDS. I firmly believe in rewarding myself. I get 3.5 hour infusions of a medication called Remicade every month. After those infusions I am tired, grumpy, and generally just not happy. So I try to find the happy each Infusion Day. Even if I have to create it. Reward ideas include: ice cream, new socks, a nice dinner, a book, my favorite green tea drink at Peet’s Coffee, anything that really says “treat yo self.” Infusions are ok if I find something to look forward to.
  7. Exercise!!!!!! I cannot stress this one enough. When my body feels strong enough to exercise it’s so important for me to spend time moving. I joined a fighting gym a few months ago and when my bones are ok, I love going there for kickboxing and Krav Maga classes. Working up a sweat keeps my mind off my bone pain and I can focus on the muscle soreness from punching over and over again! In all seriousness, working out makes me feel strong. And when my mind is strong, my body is strong. Body confidence is hard to come by when your body feels like it’s constantly battling your brain. So when possible, I try to strengthen my body. Favorite types of exercise include: horseback riding, taking fighting classes (as mentioned above), yoga, hiking, walking, and swimming.
  8. Outdoors. Being outside is a game-changer. I love hiking so much because it’s low-impact and can be done in tons of different, beautiful places. State and National parks often offer free admission on holidays, and they are so so incredibly beautiful. Protected lands are usually protected for good reason. They’re stunning. I love hiking through the redwood forests in the Santa Cruz area and looking for banana slugs and weird mushrooms. Nature is an ever-changing source of inspiration and entertainment. It simply makes me happy because of the awe I feel.

In summary, your health is yours. There are so many people advocating for “miracle cleanses” and “detoxifying” diets and many are being paid to share their opinions. Lots of these people are also health gurus, who spend a majority of their time perfecting their bodies and fitness regimens. They aren’t normal people, and they usually aren’t chronically ill! Others are simply trying to help (I have loads of friends and family who offer advice meaning well, but who might not understand exactly what I deal with). Either way, it’s important to remain educated to figure out what may or may not help you. Experimentation always comes with risks.

While I don’t (and never will) have all the answers, I would like to think I have enough experience with having an unhealthy body to know what does and doesn’t make me feel better. I can’t give advice, but I hope to share my experiences and what I’ve learned to help people make better-informed decisions about their health.

So, take this with a grain of salt. And maybe some ice cream.

Resources cited:

On the Unauthorized Practice of Medicine: http://healthcare.findlaw.com/patient-rights/what-is-the-unauthorized-practice-of-medicine.html

New York Times Article on Juicing: https://www.nytimes.com/2016/04/21/health/juice-cleanse-toxin-misconception.html?_r=0

NCCIH on “Detoxes” and “Cleanses”: https://nccih.nih.gov/health/detoxes-cleanses