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10 Things I Wish Everyone Knew About Chronic Illness

Amy Kurtz
Author:
March 15, 2017
Amy Kurtz
Written by
Photo by Stocksy
March 15, 2017

Chronic illness is on the rise, now more than ever before; a staggering number of Americans—about half1—have now been diagnosed with recurrent health conditions like asthma, diabetes, food allergies, thyroid imbalances, gastrointestinal problems, Lyme disease, autoimmune disorders…the list goes on. These health complications are affecting the way millions of Americans (young and old alike!) manage their lives on a daily basis. It's an epidemic that needs our attention! As a former "sick chick" who's been to battle with chronic illness (and lived to tell the tale!) I know how real the struggle truly is.

My long and winding journey through the modern medical landscape taught me so much about health, happiness, and strength. And let me tell you, chronic illness is one tough teacher! Here's what I learned:

1. It can happen to anyone—even kids.

My health issues started cropping up when I was 14, with an undiagnosed gluten allergy that caused me debilitating back pain. I'll never forget the day I crawled into my dad's office, confused and scared and in so much pain. From that point on, I was always aware of the physical discomfort in my body, which made me feel different from other kids. One in four children in the United States have been diagnosed with a chronic condition—imagine how it must feel to grow up not feeling well.

2. It changes your relationship dynamic with everyone.

A scary health diagnosis can feel like a bomb going off in your life: It throws every relationship into uncharted territory. It shifts your perspective and rearranges your priorities—and even your closest friends and loved ones may have trouble adjusting. The most important thing you can do is acknowledge the shift and create an open, compassionate dialogue about your needs and feelings. For me, feeling sick all the time made me self-identify as a sick chick, and people treated me that way because I related to myself that way.

Part of getting well again meant redefining myself within these relationships, and even unlearning some of the dynamics that chronic illness put into place. You'd be surprised how understanding people can be when you're honest about where you're at. Check in regularly and be present with them too. We need each other!

3. It can be super, super lonely.

We think we know what “sick” looks like—hospital rooms, medications, bed rest—but it’s impossible to see what’s going on inside the body of someone in constant pain or discomfort. Think about the word quite literally for a moment: disease, at the root it is "dis-ease." A lot of people can't wrap their heads around the fact that someone who looks perfectly normal on the outside is dealing with complicated issues on the inside. For this reason, chronic illness is often called "the invisible disease," which makes it all the more isolating.

4. Doctors don't have all the answers.

Remember that undiagnosed celiac disease I mentioned? I went to the best doctors and specialists in town and no one could figure out that pain could be diet-related—for years. Back in the 1990s, there was much less research on food-related illnesses. Toss in a perfect storm of health issues that cropped up after a trip abroad—thyroid disorder, parasite infection, Lyme disease, and a severe gastric motility disorder of the colon; I was like a walking medical anomaly! In order to get to the bottom of my health issues, I had to take the reins and be my own health advocate, learning as much as I could and assembling the right team of medical professionals to help me heal.

5. No one is coming to save you!

When I was a "sick chick," I held the belief that the right doctor could diagnose the problem, prescribe the cure, and fix my ailments with a magic pill. Wake up call! I had to learn what it meant to care for myself and really tune into my body and its needs and develop practices that sustained my healing. No one knows your body better than you. It is up to you to set it up to succeed. It is your house, and the only place you have to live. Good health isn't a one-time fix. It's about the journey, not the destination!

6. Food is medicine.

It's been said for thousands of years, and yet we still go for the Diet Coke and curly fries and wonder why we feel like crap the next day. The vast majority of chronic health issues are caused by poor diet. Healthy eating isn't a head-scratcher! But if you have a chronic illness, your diet should be priority numero uno. A simple change in diet could have saved me years of terrible back pain. Remember, food has the ability to literally change the biology of your body! What you put into your body determines how you look and feel every single day. No one chooses to be sick, but you CAN choose between foods that harm you or foods that help you heal.

7. Saying "no" is a superpower.

Dealing with a chronic illness is a crash course in time management and priorities. When your main focus is getting better and your energy is in short supply, you learn pretty quick that overextending yourself to please others is a sure recipe for burnout. I used to say yes to every favor and every invitation, even when I wasn't up for it. I didn't want my friends to think that I had changed or that I wasn't fun anymore! Gone are those days of feeling guilty about saying "no." Before I say yes to engagements, I now ask myself, "Is my heart in this? Am I being true to myself?" and if it's not a solid YES, it's a resounding NO.

8. People get it.

I spent much of my teens and 20s feeling lonely and isolated, like I was the only person in the whole world who felt the way I did. Psychologically speaking, it takes its toll. So many people with chronic illnesses withdraw from their friends and community because they don't want to be a burden, or they have trouble reaching out. Newsflash: Most people get it. And they want to help! Most crucially, you need good people around you to support your healing. Truth is, when you're honest ("hey I'm not feeling well enough to join you guys for dinner") and speaking from the heart ("but I'd love a little one-on-one time with you next week!") people respond to you the same way.

9. You're not alone.

Did I already mention that one out of two Americans has a chronic illness?! We need to start having conversations about this! As I researched and reached out about what I was going through, I found a widespread network of people with chronic illnesses sharing their stories and supporting each other in so many ways. We can empower each other with information, awareness, and community.

10. If can heal myself, so can you.

This was my biggest lesson! This was my mantra; I said it till I believed it. It took some time and many lifestyle changes, but I finally brought myself to a place of harmony with my body. And what I learned about myself, the medical industry, the process of healing, and the power of self-care…I knew I had to share. If you're interested in learning more about my story, check out my book Kicking Sick: Your Go-To Guide to Thriving With Chronic Health Conditions. No matter where you are in your health journey, you have the ability to heal, nourish, and thrive in your body!

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