20 Things I’ve Learned From Living With A Chronic Illness Before I Turned 20

I just finished up meal prep for the rest of the week! It consisted of putting some carrots in a blender to add some extra flavour to my chicken broth. Although I’m on a liquid diet for the next couple of weeks because anything else feels like acid running through my body or makes me sick – I shouldn’t complain, it was the easiest meal prep I have ever done! But the puree carrots did remind me of working at the local nursing home…

I’m young! I’ve been here for two short decades and I can say I’ve dealt with more health-wise than the average person my age.

So what are 20 things I learned about chronic illness before I turned 20?

1. It is not my fault. 

For a while this was hard for me to understand. I’ve always been health-conscious and I was always wondering what I did wrong… or even worse, what I did to deserve this. This is something far beyond whether I had drank too much pop as a kid or cracked my knuckles too often (which I didn’t). I did not choose this, but it doesn’t mean I don’t appreciate the life I’ve been given.

2. No, there isn’t a cure. But that doesn’t mean give up. 

Hearing that there is no cure, that you’ll be living with it for the rest of your life, and that the disease has the potential to be fatal is pretty devastating. You must have a good mindset. I like to think of it as: There is currently no cure therefore I must support further research. You could live with it for the rest of your life OR you could do everything in your power to work towards remission and continue to fight. The disease has the potential to kill you. Yes, but I won’t let it. 

3. Life will be different. Don’t worry, it’s not over. 

This did take it’s toll on me for a while. I’ve had to seriously think about what I want in life – from adjusting my plans on the weekend to adjusting my career plan for after university. At times this has been really difficult… Missing out on fun plans with friends and realizing your dream job could potentially remain a dream for a while longer. But I’ve always reminded myself that it all hasn’t been bad. I’ve met so many wonderful people, learned so many new things and have had so many unique experiences all due to my diagnosis.

4. I am not alone. You are not alone. 

Surround yourself with people going through the same thing, surround yourself with people that aren’t going through the same thing but love you. They want to help in anyway they can.

5. It’s okay to be sad and have hard days. 

6. Be upfront. 

People can’t be supportive, understanding or compassionate if they don’t know what you’re going through. You need to take time to educate the people that you’re constantly around about your illness so they can be there for you when needed.

7. Listen to your body.

I’ve learned to remember how I feel when I’m at my best and at my worst. That way when somethings up I’m able to make decisions based on where I’m at on my scale.

8. The power of “no”. 

I can say no. We all can. No, I can’t accept that lunch invitation or stay two hours after my lecture to wait and work on a group project or go for a walk that day. I’ve had to learn that if something feels like too much, it is perfectly okay to just say no.

9. I don’t need to justify why I’m saying no. 

You don’t always owe someone an explanation. Whether you don’t want to do something or you can’t because of your disease, whether its your best friend or a complete stranger you have every right to say no without going into detail.

10. You must be your own advocate.

This isn’t because your doctors and other members of your medical team aren’t good people. You just need to research everything, twice, maybe even three times. Ultimately, the decision is yours. So you need to make sure you’re making the best decision for you.

11. It can be a full time job. 

Not kidding. I have been to three medical appointments in less than 24 hours before. In fact, I’m doing it again between today and tomorrow. If I were to show you my calendar your jaw would probably drop at the amount of time I spend in the hospital, doctor’s offices, picking up prescriptions, getting transfusions, blood tests etc.

12. Some will be inspired by you and others may feel too sad to be around you.

13. You will have haters. 

The ones that don’t listen and don’t want to hear it. Whether it’s because you got an extension on that paper, can’t make a group meeting, don’t want to go out… you will have them! *Sigh* Send donations in their honour to your favourite chronic illness charity.

14. Never judge.

Everyone is fighting a battle of their own. Be kind.

15. Have a “someone”.

I’m so unbelievably lucky to have a few (you know who you are). They’re always doing research about your illness and wanting to learn more. They’re your open ear and your shoulder to cry on at any given moment. They encourage you to do what you can. They love you no matter what. You need them. People you can be real with. The ones you can let in, lean on, be brutally honest with, mourn and celebrate with, live through this with.

16. Treat yo’ self!

Get out of bed? Ace a test? Smile? Celebrate the victories whether big or small.

17. Self-care is non-negotiable. 

I was in denial about the fact that I had an illness that needed to be acknowledged. “You cannot pour from an empty cup” is a quote I remind myself of. There are times when you must come first. Self-care is different for everyone but to me this means eating healthy, not overworking myself, thinking positively, and getting my nails done every once in awhile. Overall, you must work towards making small changes to better your quality of life.

18. There is always a light at the end of a tunnel.

Always. Keep going.

19. Everyone’s experience is different. 

This happens a lot with Crohn’s. You can have the same disease yet have completely different symptoms. I’ve come across people who think it’s some sort of competition. Don’t let them drag you down. They are both hard. They’re different and cannot accurately be compared. Be respectful.

20. You are not your illness. 

You are you. You are great. You are so much more. Don’t let it define you.

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