Bodies like mine come with their own vocabulary, rhythms, and social stigmas.
I live with a chronic illness, ulcerative colitis to be exact. My disease is largely invisible, I’m acutely aware of it most days.
Bodies like mine are also widely misunderstood.
Over the years, I’ve noticed the same misconceptions surfacing over and over. These inaccurate, sometimes hurtful, comments come from well-meaning loved ones, curious strangers, and even medical professionals who should know better. (Seriously, bedside manner is a largely overlooked subject in med school curriculum.)
Most people mean no offense, want to help me, or are just trying to make sense of something they can’t see. But words carry immense power. That power is why I fell in love with writing.
I didn’t write this post to make anyone feel guilty. Most of the misconceptions I’ll describe come from people who genuinely care about me, and I know that. Misunderstanding isn’t the same as malice.
I’ve navigated my chronic illness and the powerful misconceptions that come with it for years now. In honor of Chronic Disease Awareness Day (July 10), it’s important to me that I explain the power of your words, your misconceptions.
Here we go.
1. But you look so healthy.
The way a person looks does NOT reflect how they feel.
Yes, I live with chronic illness. And yes, on the good days I appear just like any other 30-something woman. That’s because my illness is only visible on the lining of my intestines and whenever I get bloodwork done (looking at you, high platelet count).
Even though I look like a “healthy” person and even though I’m not elderly, I live with a chronic illness. My life involves constant juggling and rebalancing. My disease, though invisible, dictates my decisions on a daily basis.
I cannot drink alcohol or workout vigorously or eat fried foods or spend time with my friends who are parents without making a recovery plan.
Beyond ignoring the mental burden of disease, the comment of “you look healthy” feels like a backhanded compliment. On one hand, I appreciate that people are trying to be nice, to avoid other-ing me. This comment is kind-hearted in nature, and I recognize that. However, saying I “look healthy” inherently minimizes the severity of my chronic illness. On a bad day, I may look “healthy” but feel terrible. So hearing that I appear fine to you feels like salt in a wound.
Other chronically-ill people will understand this, but oftentimes our pain is as invisible and isolating as our diseases. I routinely experience severe joint pain and flu-like body aches due to high levels of inflammation.
I don’t look unhealthy but I don’t feel normal.
It’s hard for some people to empathize with my pain because they don’t see it.
That can be very isolating.
2. You’re not sick, you’re just lazy.
I live with an auto-immune disease, which means that my immune system is always in a heightened state.
I regularly experience bouts of fatigue because my body is running on overdrive, all the time.
Even though I’ve been in remission for years (yay!!) I often need to rest on the couch in a horizontal position for hours. Some days, I have fatigue because I worked out too hard the day before or I spent too much time around my friend’s toddler (those adorable germ gremlins). Some days, I’m just exhausted and there is no justifiable reason.
The Spoon Theory is a popular metaphor that chronically-ill folk use to explain our limited daily pool of energy to others.
Think of it like this: Every task, whether physical, mental or emotional, requires a certain number of spoons. Simple daily tasks like taking a shower or making breakfast might cost 1 or 2 spoons each, whereas working on a mentally-tasking assignment like filing taxes as a freelancer (speaking from experience) or going on an international trip will cost more spoons. Everyone’s “drawer of spoons” is a different size. Whatever amount of spoons you’re working with, once you run out, you’re done. It doesn’t matter how driven you are as a person, you are out of spoons and that’s that.
My drawer of spoons is larger now that I’m in remission, but it will shrink if/when I experience a disease flare. In a flare state, the bare minimum often feels like too much. All I can do is rest, even if I want to be active.
I could sit still all day and feel the equivalent exhaustion of climbing a mountain. That’s because my over-active immune system depletes energy at an enormous rate.
We are not lazy, we are recovering.
3. Chronic illness creates a life of doom and gloom.
Contrary to the previous two sections, my life is full of joy.
In spite of my disease, I travel the world. I have a loving partner who supports me. I have an adventurous group of friends. I have creative hobbies and a daily yoga practice to nourish my soul. I live a relatively active lifestyle, hiking and weightlifting and cycling.
Yes, my annual calendar is sprinkled with doctor’s appointments and the occasional colonoscopy, but I love my life! (However, screw SUPREP. I wouldn’t wish that on my enemies.)
In many ways, my chronic illness helps me appreciate the beauty around me and feel the joy within me. The bad days come up, and I deal with them. But my good days far outnumber my bad ones.
4. All chronic illnesses are caused by poor lifestyle choices.
I was born with this immune system. My disease wasn’t caused by some reckless decision I made. It cannot be undone.
Lifestyle choices can certainly affect one’s overall health and wellness. However, chronic illnesses like mine are caused by genetics and, occasionally, environmental factors beyond one’s control.
No amount of clean eating and exercise will turn my intestines into “normal” ones.
Even 5 years into remission, I still routinely experience occasional symptoms like stomach pains and extreme fatigue.
I have completely altered certain aspects of my lifestyle, such as switching from a vegan diet to a low FODMAP one (I love kale salad but my intestines do not), yet I still have abnormally high levels of inflammation in my body.
This disease is not something I caused so it isn’t something I can eradicate. I simply manage my symptoms through medication, rest, and an incredible amount of self-awareness.
I always appreciate suggestions on how to reduce inflammation, but there is a fine line between a helpful suggestion and unsolicited advice with no tangible application to my circumstances.
Today’s media ecosystem, where attention is currency and podcasts are gospel, creates a lot of heartache and loneliness for people with chronic illness.
If eradicating my disease was as simple as downing the right cocktail of supplements, I would’ve done it.
Statements like “You should try sauna and cold plunge sessions,” though well-meaning, are also minimizing. My body is not the same as a healthy person’s so advice from a healthy person isn’t applicable in the same way.
The assumption that chronic illness is the result of bad decisions puts the responsibility, and therefore the blame, on the patient. In reality, we did not cause our diseases. Most of us were born this way and are doing our best to manage our symptoms.
Please don’t promise me that I am one lifestyle modification away from a disease-free life. That’s nothing more than snake oil, but it burns like vinegar.
5. Chronic illness is fake.
I saved the most painful misconception for last.
Chronic illness is not a personality trait, a cry for attention, or something I can just push through with enough positive thinking and manifestation.
Some days, I feel “normal”. On those days, I laugh loudly, smile widely, make plans, and go hard at the gym. Then there are the other days, the ones you don’t see, and the ones I don’t talk about outside of support groups. I have many days where I’m reminded that my body operates on unpredictable terms. I have many days that test my patience and force me to come face-to-face with my body’s limitations.
That contrast is at the heart of what makes chronic illness so difficult to explain to people. It’s so easy for others to misunderstand and minimize my condition because they don’t live with it day in and day out.
I’ve spent years developing coping mechanisms to stay a functioning member of society and an active member of my community. I’ve figured out how to live well within my body’s parameters while also pushing past assumptions from people who only see my good days.
You may not experience chronic illness or live with someone who does, but it is very real.
Conclusion
Some assumptions are small. Some of them sting. All were worth addressing.
Chronic illness is not the most interesting thing about me. It doesn’t quell my ambitions, limit my capacity for joy, or determine my worth.
It is, however, a real and present part of my daily life. Illness, whether visible or invisible, deserves to be understood accurately rather than filtered through clouds of misconception.
If you take nothing else away from this post, take this: The chronically-ill people in your life don’t want your pity, just your patience.
Believe us when we describe our experience, include us when we have the ability to participate, and give us grace on the days we don’t.
If any of this resonated with you, whether you’re chronically-ill yourself or love someone who is, I’d love to hear from you in the comments. These conversations matter because the world gets a little easier to navigate when the people around you actually understand what you’re going through.