Having highly active rheumatoid arthritis – an autoimmune disease – has affected my life in so many ways. I had to leave the career I trained for, I’m in pain literally all the time, and I had to quit some hobbies that I loved. But it has also taught me a lot, and a lot of the lessons can be applied to life in general.
1. You never know how long the good moments will last, so treasure them. This is true for good pain days, periods with decreased disease activity, or even just less-stressful times of life. Enjoy every minute of the good times and make the most of them.
2. Everything can teach you something. You can learn your limits, your strengths, your weaknesses, or a tangible lesson about life. Take what life has given you and learn from it.
3. Pushing yourself beyond your limits isn’t worth it. Maybe you can reach them, but pushing yourself beyond them isn’t good for you and you will pay the price.
4. Following the rules is a good idea – most of the time. Take your medications, eat what’s good for you, get lots of rest, do what the doctor’s tell you. But break out of the box and do what makes you happy, too.
5. Bad moments aren’t all that life is, even if it feels that way sometimes.
6. You are tougher than you think you are. Everything bad that has happened to you sucks. But you made it through and you are on the other side. So remember that just because you had bad things happen doesn’t mean that you can’t survive others.
7. If you really want to do something, you can make it happen. But that doesn’t mean that it will last or that it’s best for you. I really, really wanted to be a teacher. And I did it – I graduated in 4 years with a degree in education, a teaching license in the state of Tennessee, and a job teaching ninth grade English. But between school and actually teaching, I worked myself to the bone, potentially hurt my body more, and ended up having to quit anyway. So I got my dream – but it wasn’t the best life choice.
8. Some people are only there if things are good, and they’re gone the minute that things aren’t. Don’t get too attached to them and beware of them. They aren’t necessarily bad, but they’re definitely not great for you.
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Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
I have an autoimmune disease as well, and I think the hardest thing in dealing with it is trying to get people to understand why I can't do certain things, why I'm tired all the time, why I need to get a lot of sleep, etc. I've got the meds/dr visits down and don't worry about them as much as I do trying to get people to understand what is wrong with me! lol
Yes! That’s so difficult to explain. Are you familiar with spoon theory? That helps explain things a lot better to some people!
I've finally–after YEARS–learned my boundaries and how to just tell my own self no. It may make for a less enjoyable afternoon or even longer span of time, but in the end, I'll be healthier for it. Much much healthier.
Yes! And that is incredibly important. You have to weigh the activity of one afternoon with your health for a few days or more. Sometimes it’s worth it, and sometimes it isn’t.
I have Crohn’s disease and it is very hard to explain your limitations to people who don’t have or “get” the disease. I am slowly realizing that I need to do what’s right for me, and if others don’t understand, well….then they don’t.
Yes! That is exactly how you have to do it. Have you heard of spoon theory? That’s really one of the best ways to explain it.
no but i am looking it up now!!
I have Crohn’s Disease too. I think the hardest thing for people to understand is that because symptoms are such a normal part of my life, I’m not going to bring them up unless you ask me or expect me to do something that I can’t. I’ve been accused of using Crohn’s as “an excuse” to get out of things. No, it’s not. Just because I don’t call in sick for diarrhea or I don’t whine every time my stomach hurts doesn’t mean that I’m not experiencing issues that prevent me from doing certain activities.
Brita,
Yes exactly! People think of I’m not constantly complaining I’m “cured”. Also the people who say oh yes I get really bad diarrhea too. It’s frustrating!!
#3 is so important. I think a lot of motivational advice and self-help stuff is so clearly written by able-bodied people. I was reading an e-book this morning on blogging advice. One chapter was about excuses for not having enough time. The author literally advised bloggers to stay up until 1am working on their blog, even if they had to be up at 5am for their day job. And if you weren’t willing to put in that much effort, then you didn’t “really” value family time. If you “really” value your family, you should be willing to live off almost no sleep so that you can eventually quit your day job… Um, really? I’d probably end up in the hospital if I drastically cut my sleep that much.