6 Lessons from Living with Chronic Illness

January 21, 2015

6 Lessons from Living with Chronic Illness

“But you look good.”


These are the four worst words you can hear when you’re sick. I put makeup on. I pick out an outfit. It makes me feel as close to normal as I can. Also, what does looking good have anything to do with how I’m feeling inside?

If it sounds like I’m angry, I am. Not at you. I’m angry at doctors who either don’t know how to treat me or dismiss how I feel. I’m angry I can’t fix myself. I’m angry at lichen planus and whatever else is going on in my body.

Lichen what? I know, I had never heard of it either when my dentist told me I had it over four years ago. Back then, I was also an anxious, depressed hypochondriac and, ironically, this was the one visit I thought there was nothing to be worried about. My gums had been sore and red. I thought I was just brushing my teeth too hard. But instead of my dentist’s reassurance, I would leave with years of confusion, frustration, and pain.

Lichen planus is a weird condition. It’s not contagious. There’s no cure. There’s no precise course of treatment. There’s no exact cause. It acts like an autoimmune disease, but it’s not. It can affect different parts of the body. It can last a few months, a few years, forever, and/or it can come and go. As a young woman, it’s even more uncommon.

I’ve seen a lot of doctors. I’ve done a lot of online research. I’ve tried a lot of treatment options. And four years later, it’s still with me. It imperceptibly worsens each day. Some days I feel better. Most days, I don’t.

It’s even harder when nobody understands how tired/in pain I am because on the outside, I look healthy. I’m able to maintain a daily routine for the most part. So people, even doctors, are extremely dismissive of my symptoms. “We’re all tired.” “Well, it just hurts growing older.” I want to scream, “MY BODY IS ATTACKING ITSELF AND I DON’T KNOW HOW TO STOP IT. I FEEL BROKEN.”

But, despite my own struggles, I’ve learned a few lessons from living with chronic illness, for people who are and aren’t struggling with their health.

1. There’s no fault.

I used to think people with diseases/conditions weren’t trying hard enough or everything to get better. Or worst, that every condition could have been prevented. Boy, was I wrong. There’s a million reasons why internal “switches” go off and it’s not my place to judge to something we have no control over. With that being said …

2. Being sick sucks and sometimes your friend just needs to tell you that.

Most of the time, your friend is not milking how much being sick sucks. They deal with their condition on a daily basis. If they told you every time something hurt or they were tired or they feel helpless, they’d never shut up. So if they just need to tell you how much it sucks once in a while, just listen. They probably feel horribly guilty and/or ashamed for complaining so be that compassionate ear for them. It helps us feel better. Even just for a little.

3. The Internet is the best/worst.

The Internet is truly an amazing source of information, but it’s a double edged sword. Anyone can post on the Internet anything about anything. If you have a gut instinct that what doctors are telling you doesn’t make sense, do your own research. Other than that, use the Internet sparingly. You’ll end up feeling worse than you already do.

4. You need to prioritize getting better.

“Insanity: doing the same thing over and over again and expecting different results.” – Einstein

If you’re sick, you have to do something different. The lifestyle you live is not working. It sucks because there’s so much to wish to accomplish and you feel like if you take a step back, you won’t be able to do anything. But in my experience, slowing down and doing less actually helps you do more. It focuses your priorities and goals. So cut back on work or social events. Sleep more. Go outside more. Don’t let anyone make you feel guilty for taking more time for yourself. You need to heal and the only way to do that is prioritize yourself.

5. I/You/We am/are not alone.

Being sick can be ostracizing. We feel different. Not “normal.” But illness doesn’t have to make us lonely, back-wood recluses. Remember that there are millions of other people out there just like us and we have to support each other. Don’t shut yourself away for fear of judgement. You can only be you. You are what you are for a reason. Also, there are more people out there who are more understanding than you might think. Reach out. Ask for help. Ask for comfort. Be there for others.

6. Enjoy life!

Even though being sick sucks, life is still pretty awesome. Hang out with friends, laugh, enjoy nature, read a book, sing, dance – whatever makes you happy! Nobody can rob you of the joy you get from those things, not even your illness. Your condition doesn’t have to take away your life. It just changes it.

Maybe you’re completely healthy, maybe you have a condition you’re dealing with–but at the end of the day, life doesn’t stop! 

Also see: Why Me?: When a Health Nut Gets Cancer

On Physical Injury and Recovery

What Cheryl Strayed’s Wild Taught Me About Acceptance


Photo:  Lulu Lovering via Flickr

Maddie Patrick is a writer, performer, and comedian originally from New Jersey, currently living in Los Angeles with her husband and two cats. You can find her on her website, www.maddiepatrick.com.


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