Things I Learned From Being Chronically Ill

This came to the two of us one day, because if you think about it being chronically ill is harder in more ways than you think.  There more than the obvious hardships caused by being sick.  One of Tremors’ doctors said something to her recently that prompted this.  He said something along the lines of how doctors never 100% know what their patients are doing outside of the hospital / clinic.  Meaning that they do not always know the small struggles occurring at places such as school, or work.  He said that when someone is chronically ill, they have to have a true strength to deal with all of this and learn a lot from it.  Because, of this strength spoonies are pretty much able to live double lives, one being as a patient, and another as a human being.  From all of this, of course you are are able to learn some valuable lessons.  These lessons others may learn as well without having a chronic illness, but when you learn them due to a chronic illness, they because of very different reasons.

1. I learned how to stand up for myself: Now, you may be thinking to yourself, that a lot of people have had that lesson.  Whether it be standing up to a playground bully, or speaking your mind, many have to learn this lesson.  However, I learned this in doctor’s offices, demanding treatment for example.  I was standing up for my body, no matter how broken it is.  I was not taking no for an answer.  I had to learn how to advocate for myself, because my life really do depend on it.  
2. I learned how to deal with people: Again, something that a lot of people have to learn, however between clinic visits and hospital stays, there are too many people to remember.  You have to learn how to interact with all of these people.  If you don’t, you can and will run into problems later.  There are some people you just click with.  This is when you reach that understanding, and everything seems alright for the moment.  Other times, you want nothing more than for that person to leave the room.  Honestly, I think we are still learning how to deal with the latter.  
3. I learned how to appreciate the little things: I learned how to appreciate things like being able to sit still and not jerk constantly.  I learned how amazing it is to be able to close the door when I go to the bathroom, instead of keeping it halfway open so the various wires and lines can be let in.  The fresh air after you leave the hospital is so much better than the stuffy hospital air.  Real food, and being able to eat it without being sick is a small thing that I love.  I appreciate the moments when I feel “normal” and do not have to worry about my symptoms.  
4. I learned how to let people help me: When you are chronically ill you need to put your trust in those around you.  This ranging from asking someone to grab something to you, to when you actually put your life in their hands.  You have to know that they will be there for you, and that can be beyond terrifying.  You have to understand that people who are around you care about you, and want to help.  
5. I learned how to be honest: Instead of covering up my symptoms I learned that it is okay to let them be seen.  I learned that if they truly care about you, that they will not judge you.  That they will sit with you when you are sick, and talk with you when you need someone to listen.  When you have a new symptom or side effect, you do not have to keep it to yourself, and you can tell someone who will help you.
6. I learned who my true friends are: When you are chronically ill, it takes a toll on everyone around you.  If they do not have a chronic illness themselves, it can be hard for them to understand what is happening to you.  Some may become distant, but others are absolutely amazing.  They are the ones who stand next to you through everything.  They are the ones that know more about you than your own family, and are always there to take care of you if needed.  Either in person, or in spirit, these friends are the ones who are by your side no matter what.  
7. I learned about family: I learned that there are times when family is always going to be there for you.  I had family sit next to me in the ER, in the hospital room, in clinics, and in doctor’s offices.  They are the ones who stand up for you no matter what, and are the one who is on your side.  However, there are also some family members that are not up for the challenge.  They do not know how to deal with the fact that you are not normal, and it impacts the relationship between you two.  But the family members who stay, are the ones who will never leave your side.  
8. I learned how to accept myself: When you are showing symptoms you get odd looks.  People do not understand why you have a service dog, why you are limping, why you are wearing a beanie, why you are twitching, etc.  From this the only thing you really can do is keep your head up.  You can answer questions, or talk back, but you at the same time need to accept who you truly are.  You need to be comfortable in your own skin, and once you can do that, you are unstoppable.  
9. I learned how to smile: I learned how you have to laugh and smile, because other times you are going to cry.  If you can find one small good thing in your day, it can make all the difference.  Because, I would rather be laughing than crying anyday.  That’s why here in The Medical Dorm we always try to spend our time smiling and laughing.  Even on a bad day, there are still ways to make us laugh.  
10. I learned that it is okay to have a bad day: I learned that there are days when you just cannot get out of bed.  There are times when you need to take a step back, as hard as that can be.  It sounds annoying, and cheesy, but without the bad days you cannot totally accept the truth that there are good days around the corner.  

Being chronically ill shapes you as a person whether you like it or not.  You may wish that you can be totally separate from your diagnosis, but it is still a part of you.  From this, you can draw strength.  You do not have to be the person with (insert diagnosis here), you can be the person who does all of these amazing things.  

WE BELIEVE IN YOU!

-Nemo, Tremors and Secret Agent Puppy