Tuesday, May 20, 2014

Ten Things To Understand About Living With A Chronic Illness

1. People always say "You are too young to be in that much pain!" Chronic illnesses do not discriminate! It does not matter your age, 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!" That's the problem we aren't "just fine." Our disease is invisible to the naked eye but, if you turn 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 97% of chronic illness are invisible(often nicknamed invisible illnesses) 
3. We do not 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 last minute but this disease effects daily and how we feel changes daily. 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 a typical life. Another thing do not wish you were us and say you want to live like we do 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!" No, 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 the body. Psychological illnesses do not cause hair loss, heart defects, decreased lung function, paralysis, or dysfunctional gastrointestinal systems.
6. Do not 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 will get there eventually. That pity makes us feel like you miss out on all the amazing things we can. 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 and we 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! So 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. Many with chronic illnesses deal with chronic fatigue and that just wears us out to start with! 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." Everyday 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. Everyone is entitled to a mental breakdown every once in a while. 


  1. We don't know each other, but I wanted to let you know that I really felt with this post (ignorant comments can really get to me), and so I looked through your blog just now, and it really inspired me and it gave me hope — which I could really use atm so thank you!! I'm 15 too with gastroparesis; I was like, wow, when I saw that, though your GP sounds worse than mine (as I don't have a feeding tube), but I'm so so so glad and amazed I found your blog, great job, it's awesome and a blessing and I love it. <3
    (ps, love the superman shirt)

  2. BRAVO!!! This is an AWESOME post!!! My husband has GP (diagnosed about 7 yrs ago.) When this illness "hit" him, he was "buff" as could be (he worked in the oil well biz and as such had muscles upon muscles!) As a result of this illness, he lost all of the muscle and got down to as low as 135 lbs (he's 5'10".) Had it not been for my coming back into his life (long story) he well could've (probably would've) died. Once I got the low down on the illness, I started researching, researching, researching...soon I had him on a GP friendly diet, vitamin supplements and protein drinks. I'm pleased and BLESSED to say that he is now back up to his "fighting" weight of 225.lbs. He does have flux's but he's been over 200 lbs for the past year (we've only been together 2 yrs.) Everything you've put out there in this article is so VERY TRUE!!! AND it doesn't get any better/easier as you get older. We're both in our 50's and we get the same responses/attitudes from folks we meet/encounter/are friends with. I can only imagine how much more difficult it is for someone in their teens/twenties/thirties who are afflicted with this illness. Hang in there, and keep up the good fight!!!!

  3. This was very encouraging and so true! I started my battle with chronic illness at fourteen. I love your encouraging attitude even through the hard stuff. You are so right when you say that some of the happiest people you meet have chronic illness. I think so much of it has to do with appreciating the little things! Stay positive and remember that it is always okay to cry when you are overwhelmed and upset with chronic illness.

  4. This is right on, great writing!! Thank you!!

  5. I admire you're strength at such a young age. I read this and see how it also can apply to the many people struggling with mental disorders such as bipolar, depression, anxiety, etc. I being one of those many. We look fine but we're not fine. Keep it up and stay strong!

  6. Great post. I've seen a few like this talking about brain tumors. I should do one too!

  7. Thank you for your post. While I do not have the same type of chronic illness you do, I do suffer from chronic lung disease. I am not able to voice my feelings as much as you or as well, but am glad you did. I hope this post finds those who have not softened their heart to those who suffer or even seem to care. Thanks!

  8. This is perfect! I spent 6 months on dialysis before finally getting a kidney, and every day faced multiple things on your list! People don't understand if you don't "look" sick.

  9. This is wonderful, I too suffer from several "invisible" chronic illnesses. I have heard everyone of these things over the past 16 years. I try to stay positive. I have been screamed at for using a handicap parking spot (yes I have a permit displayed on my windshield). I try to explain to people that just because you can not see what is wrong with me does not mean that there is nothing wrong. More people need to be informed !! Post like this will help do just that.....I will share the heck out of this.......THANKS !!