The way I see it…

“We just see things differently,” is something I’ve heard a lot recently. And I suppose that’s true.
Where some see oppression, I see an accessibility tool. I am able to navigate the world more safely when both myself and others are wearing masks.

Where some see a violation of rights, I see concern and kindness for others. A person’s willingness to wear a mask for the protection of the people around them is, to me, an incredible act of love.

Where some see “fake science” and biased information, I see sound evidence coupled with years of personal experience. I’ve worn masks for decades (with lung function as low as 27%) without ever experiencing complications. My team of care providers and dear friends in healthcare have safely and effectively worn masks throughout their careers, sometimes for the duration of entire shifts or lengthy surgeries. (Spoiler alert: they’re all fine.)

Where some see “sheep” blindly complying and following sinister orders, I see community, love, unity, and a combined effort to care for one another and combat our common enemy.

If the way I see things turns out to be wrong, I will have unnecessarily worn a mask for a few months. No biggie. But if the way I perceive things is correct, and people have refused to take precautions, we’ll experience a tremendous amount of preventable loss and heartache.

I’ll wear the dang mask. This is something I’m willing to be wrong about.

Unsolicited advice for the chronically ill. Maybe just… don’t.

“Try CBD oil. Stop taking those toxic medications. Push yourself a little more. Don’t push yourself too hard. Keto fixes everything. Have you tried meditation? Pray more. Take these vitamins. Drink more water. Have you considered an exorcism?”

Raise your hand if you’re heard these (or other) nuggets of wisdom from a well-meaning friend or stranger on the internet.

Receiving unsolicited health advice is a given when you have a chronic illness. We, as humans, have an innate desire to fix things. Unfortunately, that also applies to other humans that we assume are “broken” and in need of aid.

Giving someone unsolicited health advice implies that you know more about their condition than they do, they haven’t done everything within their power to help themselves, and they aren’t capable of researching their options and making the best decision for themselves.

This is not to say that all advice is unwanted. I’ve gotten some great advice regarding my health! The difference is – sometimes it’s asked for and other times it’s aggressively thrown at me without any warning or desire on my part.

If someone wants advice regarding their health, I promise you, they’ll ask for it!

But if you absolutely must share your thoughts on something, there’s a proper way to do it. For example, saying something like “Hey, if you’d like more info about _____, let me know” is so much better than, “You MUST try ____! If you don’t’ you’ll be sick forever! A friend of a friend of my grandma’s cousin tried it and was totally cured. Also, CF isn’t even a genetic disease, it’s a mineral deficiency.”

(That last part is something I’ve actually been told.)

To you well-meaning friends out there who just want to help, I know your heart is in the right place. But empathy and sincere questions from you feel so much better than trying to be fixed.

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After I posted about unsolicited advice yesterday, I got a message that essentially said, “People are just trying to be nice. Listen to their advice and be grateful that they care.”

Imagine that – more unsolicited advice!

But I get it, I really do. I knew there’d be people who’d read that and think I was overreacting. They might think I’m making a big fuss over nothing – people are just trying to help. What they don’t understand is that this kind of unwanted advice is more than just a little annoying, it can be incredibly damaging. And here’s why…

It sends the message that we’re not trying hard enough, that we could “fix” ourselves if we really wanted to, and that we are not the expert on the medical condition we live with every single day. It blames and shames the person who spends their entire life fighting something they didn’t cause or ask for.

It’s invalidating and condescending when someone believes they know more about your condition from a bit of Googling than your doctor with their expertise and your everyday lived experience actually having an illness.

It’s painful to hear that you’re not living your life correctly and that maybe your symptoms are your fault (which is what this kind of advice implies). While someone may think they’re kindly offering helpful words of advice, the weight of those words is troubling and emotionally burdensome.

Out of respect for disabled and chronically ill people, trust that they (and their medical teams) are the most knowledgeable about their own health and lifestyle needs. If you do give advice or suggest a product and someone says they aren’t interested, respect their wishes!

When someone already spends so much time and energy doing all they can for their health, the last thing they need is someone telling them they’re not doing it right. Unsolicited health advice is intrusive, ableist, invalidating, and emotionally taxing.

So, while I am grateful that people care, I don’t have to be grateful for their advice.

And you don’t have to be either.

What are your thoughts on all this? Have you been the victim of unsolicited advice? What’s the worst or most bizarre piece of health advice you’ve been given? 

Diet culture in the chronic illness community

If you’ve been following me on Instagram for any length of time, you’ve likely seen the term ‘diet culture’ thrown around (generally in conjunction with a bunch of unfavorable words because – spoiler alert – diet culture is the WORST).

So what’s the deal? Why do I hate this thing so much? Well, let me tell you…

Diet culture is a term used to describe a pervasive set of beliefs that places value on the size, weight, and shape of a person’s body over their actual health or worth as a human being. It equates thinness to health and moral virtue. It tells us that our bodies are the most important thing we have to offer the world, and that who we are is secondary. A person can spend their entire life feeling broken and devoid of worth simply because they do not fit the unrealistic, unattainable “ideal” that diet culture promotes. Among other things, diet culture can lead to crash dieting, disordered eating, depression and anxiety.

In short, diet culture is extremely damaging and full of lies.

Another facet of diet culture is the demonization of certain ways of eating. Diet culture loves to label foods as “healthy” or “unhealthy” – “good” or “bad” — even when scientific studies yield contradictory evidence. Each new diet says, “this is the right way and your way of eating is wrong.” This forces people to be hyper-vigilant about their food choices, triggers guilt and shame, and totally robs them of the enjoyment that eating can bring.

I have a real problem when diet culture and this type of nutritional elitism show up in the chronic illness community. And sometimes it’s so darn subtle and sneaky!

“Inflammatory diseases can be cured with an exclusively raw diet.”
“Clean eating is the way to go!”
“If you cut out [insert whatever random nutrient/food group is being condemned at that given moment] you’ll feel so much better. Did you know that’s not even essential for your body?”

While these statements may not seem particularly menacing on their own, it’s the subtext that is far more concerning to me. These types of beliefs promote the idea that health can be attained through restrictive eating or dieting when the simple fact is, some people will never be completely “healthy” through no fault of their own. Diet culture insists that we can prevent disease and stave off disability if we just buy the right foods, take the right supplements, and commit to the right exercise routine.

See, not only is diet culture a nasty liar, she also perpetuates ableism.

Now, before I go on, I want to make it clear that I fully believe and stand by the notion that what we eat affects our bodies. However, there is a huge difference between having a mutually beneficial discussion about nutrition and shaming someone for their health and/or food choices. Our bodies are as unique as our individual personalities – there is no such thing as a one-size-fits all diet. In fact, recent research suggests that nutritional needs may be more individualized than we ever thought.

Researchers tracked 1,100 adults (including 240 sets of identical twins) for two weeks, during which time they monitored blood sugar, insulin levels, and fat levels after study participants ate pre-formulated meals. They also tracked participant’s sleep and exercise routines and tested their gut microbes. They discovered “foods that spiked one person’s blood sugar or kept their fat levels elevated for hours didn’t necessarily do the same to the person sitting next to them” even when those people were identical twins.

Another study found that eating the same exact food affects blood sugar differently in each person. This high interpersonal variability suggests that the labeling of foods as “good” or “bad” based on average glycemic response may mean very little on an individual level, as each person reacts so differently to the same food. Researchers say that the huge differences found in the rise of blood sugars in participants who ate the exact same meal “highlights why personalized eating choices are more likely to help people stay healthy than universal dietary advice.”

Additionally, the World Health Organization consistently reminds us that there are social determinants of health – such as oppression, discrimination, access to healthcare, income level, etc. – that have enormous impacts on our overall health and wellness. So, it’s important to remember that what we’re eating isn’t the whole (or arguably even the main) determinant of our health status.

Once again, I reiterate – diet and nutrition are incredibly important. There is value in learning what our bodies need and how to best care for them. But there are no universal rules and there are limits to what food can do. It won’t cure a genetic disease, or most other diseases for that matter. It doesn’t always have to be used as medicine. Gosh dang it, food should be enjoyed!

Another thing about diet culture is that it has a funny way of making us think we can judge other people’s health status by their physical appearance, and that we have the right to tell them what they should be doing differently. Which is kind of crazy when you think about it! Can you imagine if I randomly told you that since I saw a picture of you one time, or read one of your social media posts, or met you in person for five minutes, that I think you should be taking a cocktail of specific prescription medications? It’s weird, right? Yet we do this exact thing with food and diet tips ALL THE TIME.

So if you’ve been on the receiving end of the guilt and shame that diet culture inevitably leaves in it’s wake, remember that your body is unique. It is truly unlike anyone else’s! Your illness is not your fault. You’re allowed to eat what you want without feeling guilt. There is nothing virtuous about a bowl of kale, and nothing evil about a slice of cheesecake. Food has no moral a value – it’s not inherently good or bad! You (and perhaps a physician or nutritional therapist with whom you’ve shared your extensive medical history and mutually decided upon a diet plan) are the only one who knows what your body needs and wants.

If eating or not eating certain things works for your body or belief system, then by all means, do whatever makes you feel best! But can we please stop perpetuating a culture that tells other people what to do with their bodies?

 

Resources:
Ducharme, J. (2019, June 10). A study on twins offers proof that we all need personalized diets. Retrieved from https://time.com/5600706/personalized-diets-study/ 
World Health Organization (2018)
Zeevi, D., Korem, T., Zmora, N., Israeli, D., Rothschild, D., Weinberger, A., … & Suez, J. (2015). Personalized nutrition by prediction of glycemic responses. Cell, 163(5), 1079-1094.

 

 

 

We’re on the same team

As I was lying awake last night due to the pain I was feeling with each breath, instead of trying to count sheep, I found myself counting the number of months since I’d been in the hospital. Then the number of days until my upcoming surgery and the number of times I’ll make the two-hour drive to my hospital in the next month. I finally fell back to sleep around the time I was counting the weeks since I’d experienced this familiar pain in my chest. It’s been a while, and for that, I am grateful.

Having a chronic illness feels like constantly being at war, only the adversary isn’t an unknown enemy, it’s your own body. You fight battle after battle, all the while knowing that there’s no end in sight. Even when the dust seems to settle for a while, the enemy is planning its next attack. You can never fully rest because you’re always cognizant of the fact that if you let your guard down, your opponent will take that opportunity to sucker punch you right in the face then laugh as you spend the next few weeks or months trying to recover.

It’s endless. It’s exhausting. It’s absolutely draining.

I was contemplating these thoughts this morning as I sat drinking my coffee, trying not to anger my lungs by taking too deep a breath. This specific type of pain is not entirely uncommon. In fact, it’s a classic sign that I’ve pushed my body a little too hard. This is simply what she does when she’s worn out. Extra treatments, some targeted manual CPT, plenty of hydration, and some rest should resolve this issue. I’ll be fine.

That’s when I realized something: my body is telling me exactly what she needs right now. Is that what the enemy would do? In a true battle, the opposing side doesn’t give you a bullet point list of instructions, but that’s oftentimes exactly what my body does (if I’m willing to listen to the clues she gives).

My body isn’t the enemy, this disease is!

My body does nothing but fight for me – that’s literally all she does every single day. She fights through exacerbations. She fights to keep me breathing. She fights through side effects of medications and unpleasant medical procedures. She fights to carry me through my day-to-day life. She fights so I can enjoy days with my family and spend more time with my daughter. She fights to give me as normal a life as possible.

I have to stop thinking of my body as my nemesis and remember that I’m not fighting against her, I’m fighting with her. We’re on the same team! I’ve often said that I feel betrayed by my body, which is neither kind nor completely accurate. I’m a huge advocate for body positivity and unconditional kindness toward oneself, but I’m a total hypocrite! I’m always saying things to and about my body that are negative. My lungs suck. My sinuses are a wreck. My joints are busted. My pancreas is worthless. If anything, I’m the one who betrays my body by being so hostile when things aren’t going my way.

I’m the jerk, not her!

So I’m trying something new. I’m going to make a real effort to treat my body with absolute kindness. I’m going to stop portraying her as the enemy and remember that she truly is my best friend and biggest ally. I’m going to reframe my thinking in moments of pain and frustration. What is my body telling me? What does she need? Rather than thinking of all the ways my body holds me back, I’m going to focus on being grateful for the truly amazing things she does.

My beef isn’t with my body, it’s with the monster that lives inside. CF is the enemy, and my body? She’s not a traitor, she hasn’t betrayed me; she’s a miracle (and honestly, kind of a badass)!

If I’m lucky, we’ll be battling this disease together for a long, long, very long time to come.