10 Things I Want You to Know About Living With a Chronic Illness

05/12/2015 05:20 pm ET | Updated May 12, 2016

1. People always say, "you are too young to be in that much pain!"
Chronic illnesses do not discriminate. I'm a teen living with a chronic illness and it does not matter how old you are, race, gender or 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!"
The problem is, we aren't "fine." Our disease is invisible to the naked eye but, if you turned our bodies inside out you would see the real damage our disease has caused us. The reason most people with chronic illnesses look "fine" is because approximately 96 percent of chronic illnesses are invisible.


3. We do not cancel plans on purpose 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 last minute but our diseases effects us differently every day. Maybe one day we are able to go out to a movie with friends and then the next we are lying in a hospital bed.


4. Laying 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 typical daily life. Another thing, don't say you wish you were us because it is 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 very common saying everyone with a chronic illness has heard. It is not psychological. It is real and causes very severe physical effects to our bodies. Psychological illnesses do not cause heart defects, decreased lung function, paralysis or dysfunctional gastrointestinal systems.


6. Do not pity us.
We can do almost everything a healthy person can do, we just have extra challenges along the way. It may take some more time but we will get there eventually. That pity makes us feel like you miss out on all the amazing things we can do. Try not to focus on the "I can't," and look at what amazing people we really are. We get enough pity from random strangers and do not need it from friends and family.


7. If you don't know about our disease ask.
We will 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! Please do not come up to us saying you've found our miracle cure because more than likely you haven't!


8. Most importantly we are not lazy.
A large portion of those with chronic illnesses deal with chronic fatigue. Therefore, it leaves our already struggling body with lack of energy. 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. Often times exercise can make chronic illnesses worse. 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."
Every day we wake up and put on a brave face, smile and act like nothing is wrong. People with chronic illnesses are some of the bravest, 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 is hard to be positive everyday when nothing ever seems to go right and you're in so much pain. However, everyone is entitled to a mental breakdown every once in a while.


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