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10 Things I’d Like People to Know About Living With a Chronic Illness

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I’m 17, going into my senior year of high school and I have mitochondrial disease. I am dependent upon feeding tubes, IV nutrition and countless medications to keep my body working every day. I need plenty of help just to get through the day, and it’s definitely not easy at all! Thankfully, I have a wonderful support system. Despite all of this, I try and live past my illness every day and continue to try and do the things I love even though my disease has taken a lot away from me. Here are the things I’d like you to understand about living with a chronic illness.

1. People always say, “You are too young to be in that much pain.” Chronic illnesses don’t discriminate. It doesn’t matter your what your age, race or gender is. It doesn’t matter where you live. All children, adolescents, young adults, adults and the elderly are at a risk of developing and managing a chronic illness.

2. “But you look perfectly fine.” That’s the problem, we aren’t “just fine.” Our disease is invisible to the naked eye, but if you turned our bodies inside out, you’d see the real damage our disease has caused us. The reason people with chronic illnesses look fine is because their illnesses can be invisible, so that’s why they’re also known as invisible illnesses.

3. We don’t cancel plans on purpose or because we don’t want to hang out with you. Trust me! We would do anything to be normal and just hang out with friends, but sometimes we are too sick to even get out of bed. Please understand we don’t mean to cancel at the last minute, but this disease effects us daily and how we feel changes daily. One day we’re able to go out to a movie with friends and then the next we’re lying in a hospital bed.

4. Lying in bed all day is not a luxury. Netflix and the Internet can only entertain you so much. After a few hours, you start to get bored and want to experience a typical life. One other thing: Don’t wish you were us and say you want to live like we do because it’s definitely not glamorous. Many of us would much rather be working or hanging out with friends.

5. “It’s all in your head.” This is a common saying a lot of people with chronic illnesses have heard. It’s not psychological. It’s real and causes very severe physical effects to the body.

6. Don’t pity us. We can do most everything you can do. We just have some extra challenges in the way. It may take some extra time, but we’ll get there eventually. Try not to focus on the “I can’t” and look at what an amazing person we really are. We get enough pity from random strangers, so we don’t need it from friends and family.

7. If you don’t know about our disease, just ask. We’ll be more than happy to explain it to you so you can understand more about our condition. Information found online may not be entirely accurate or related to the specific diagnosis we have. Never assume that you know it all when more than likely you don’t. So please don’t come up to us saying you’ve found our miracle cure because more than likely you haven’t.

8. Most importantly, we’re not lazy. People with chronic illness might also deal with chronic fatigue, and that just wears us out. Imagine if you were fighting a battle against your own body. Your body has to do both parts of the fighting here! Can you imagine how much energy that takes? We try to keep caught up with work and school and not stay in bed and sleep all the time, but it does get hard.

9. “If only you would exercise more.” I’ve heard this one too many times before. Your physical strength does play a role in chronic illnesses, but, trust me, we try to keep pushing through and do as much as we can. However, our disease can limit the amount of energy and strength we have so this makes exercising difficult. There are some chronic illnesses which require the patient to not exercise at all. The patient’s physician will be able to tell whether exercise would be beneficial.

10. “If only you were more positive, then you would feel better.” People with chronic illnesses are some of the bravest and happiest people I’ve ever met. They love life for what it is because they all know life is short and you don’t get an extra chance. It’s hard to be positive every day when nothing ever seems to be going right and you’re in so much pain. Everyone is entitled to feel negatively every once in a while.

Michaela Shelley the mighty

A version of this post originally appeared on It’s Not as Easy as You Think.

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Originally published: June 19, 2015
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