What I Wish Someone Had Told Me About Having a Chronic Illness

(TW: this article contains descriptions of mental and physical illness that may be distressing for some, discretion is advised.)

As a toddler, I was diagnosed with moderate to severe atopic dermatitis (commonly known as eczema), which is an autoimmune disease that causes extreme itchiness, dryness, and allergic reactions, among others. After years of hospital visits and homeopathic remedies, rounds of oral steroids, bleach baths, and countless diet changes, I’m slowly but surely starting to feel comfortable in my own skin. Here’s what I wish someone told me about having a chronic illness:

There are good days and bad days and really bad days.

Having a chronic illness is like having a bad case of the flu: sometimes you wake up feeling kind of crappy, but you power through your day despite how bad you feel. Other times you wake up wishing that you would never wake up again. Maybe your joints are so painful that you literally can’t move, or maybe there’s heaviness inside of you that makes it harder to get out of bed. 

My worst eczema flare ups left me bedridden and depressed, only able to stand up for bare necessities like eating or going to the bathroom. When my skin finally healed enough to go back to school or to go see family, I often felt embarrassed — both of how I looked outside and how I felt inside. 

The thing about having a chronic illness is, unlike the flu, it doesn’t end. Sometimes days will look less like Good Days and Bad Days, and more like Okay Days or Less Bad Days. 

You are not broken.

Repeat after me: you are not broken. This goes for all illnesses, chronic or not, mental or physical. If your brain kind of sucks at producing serotonin, that’s okay! If your immune system keeps attacking itself for no reason, that’s okay too. 

More often than not, illnesses come in groups of two or more, like anxiety and depression, or diabetes and cardiovascular issues. There have been countless times in my life where I believed that I was broken or that something was inherently wrong with me. When your illness makes you feel miserable all the time, it gets easier to fall into this trap. It’s important to remember that you are not your illness —  yes, it’s a part of you, but it’s not you. 

You are in control of your own body.

Anyone with any type of chronic illness has heard dozens upon dozens of unsolicited advice from family, friends, and even strangers. As someone who grew up with eczema, it gets tiring trying to listen to the nth ‘miracle cure’ that worked for your friend’s-aunt’s-cousin’s-teacher. Especially when you’re young, it can feel like you have to listen to every suggestion that comes your way. But you don’t; your bodily autonomy matters. 

You don’t have to rub turmeric on your scalp, or use essential oils, or go vegan, or do yoga, or go to a witch doctor in some remote province. Some things can’t be cured, and guess what, you don’t need to be cured. Your illness doesn’t make you any less of a person.

You are loved.

My mom always tells me that I tend to apologize even when things aren’t my fault. Sometimes I feel guilty for racking up eighteen years’ worth of medical bills, or things as simple as special detergent and soap. Having needs that differ from the average person doesn’t make you a burden, and they don’t make you any less loved by your friends, family, and loved ones. You are loved!