1. People are both better and worse than you think
Illness tends to bring out the best and the worst in people. You find out very quickly how awesome some of your friends and family are. People will be there for you that you might have never predicted. You also find out very quickly that having an illness makes you a target for criticism and judgment. You have to develop a thick skin and learn how you’re going to handle discrimination.
2. You are stronger than you think you are.
You never know how strong you are until that moment when your whole life crashes down and you’re left to pick up the pieces. You can do hard things, even when you think you can’t.
3. Pain doesn’t actually kill you
It turns out that being in pain 24/7 doesn’t bring death, you just sometimes wish it would. The human body and spirit have a surprising tolerance for pain. During one of those most painful experiences of my life (a large kidney stone that was stuck), I found myself joking about it with the nurses. It still boggles my mind that I was able to do that while simultaneously wishing for death.
4. There is more to life than being healthy
It turns out that you can still live a joyful life, even though you feel terrible all the time. You will still experience regular ups and downs. You will still have moments of joy and wonder. You can still develop meaningful relationships with the people that really matter. You can still be a good person that makes a difference in the world. Your health is not everything that you are.
5. Doctors don’t actually know very much
Doctors don’t handle chronic illness very well, so if you have one you have to become your own medical expert. There is a good chance that you will come to know more about your illness than your doctor does. The key is to find a doctor who isn’t threatened by your knowledge and is willing to work with you.
6. Laughter can make everything better
Even at my sickest, as long as I’m able to maintain my sense of humor I know I will be okay. Sometimes you have to laugh so you don’t cry.
7. There are people out there who are experiencing the same thing you are
There are so many times I have felt completely alone in my struggle, and then I got on the internet and found thousands of other people that are going through the exact same thing. I will read someone’s blog post and find myself in tears because they expressed my emotions exactly. Internet support groups are another must when you have a chronic illness if only to validate your experience and to remind you that you are not alone.
8. Being positive can’t fix everything
Positive thinking is a coping mechanism, not a cure. Having a positive attitude is often helpful, but it can’t make you better and there are times when it is appropriate to cry. You can’t be happy and positive all the time. Allowing yourself to feel is important. It’s okay to feel anger and despair, and then move on from those emotions when the time is right.
9. Some things are beyond your control
You can manage your illness and your body like a pro, but there are always going to be things you can’t control for. Your body is going to let you down at inconvenient times, and there isn’t a whole lot you can do about it. Your doctor is going to screw up your medication and send your health into a tailspin. Your insurance is going to refuse to let you get the treatment you need and prevent you from progressing as you want. These things will happen to you and it will be frustrating. You have to focus on what you can do and not feel guilty about the rest.
10. This is your journey and yours alone
You may have all the support in the world from your family, friends, doctor etc. but at the end of the day this is your journey and you have to learn to deal with it. You have to rebuild your life around your illness, you have to handle all the ways illness has changed who you are, and you have to figure out who you want to be. You can (and should) rely on family and friends for support, but at the end of the day, you alone need to decide what kind of person chronic illness will make you.
So many great points here!
Your point about positivity is really spot-on, though. I feel like people with chronic illness are pushed to always be positive about their situation and should be thankful that it could be worse. Sometimes though, it’s perfectly okay to feel that way. It also seems unreasonable that we should be expected to feel a certain way about our illnesses.
Thanks for writing and sharing this!