After a lot of thought, I’ve decided to put my column on hiatus for a while. There’s a lot going on for me right now health-wise and otherwise, and I’d like to take a break to catch up and explore other projects. I’m so grateful to the readers who have reached out and provided me with feedback over these three years, or just read silently without me knowing, which is probably what I'd have done.
It’s been a great experience, and I may come back to posting here at some point. Many thanks to CCF, especially Mary and Christine! And FYI, I’ll still be @katiefmclendon, re-tweeting late-breaking high-priority news on topics like Halloween in Japan and dogs falling between sofas.
In the meantime, don’t let anyone belittle your disease experience, including mocking your diet in lazy unfunny ways. It’s good to be able to laugh about your own illness sometimes, but only when YOU think it’s funny. Otherwise, it’s the joking equivalent of being told to “smile!”
Take care and be as well as you can be, while still being happy and not driving yourself crazy. Happiness/contentment/fulfillment and health are inter-related but NOT completely dependent on one another, thank god. You do not need the miracle cure, or need to listen when others evangelize about them, and also you don’t have to do everything other people do to prove that you’re “OK” or “never limiting your goals.”
That being said, you don't have to live a smaller life because you're sick. There are hacks and serendipity and virtual networks and just alternative ways for you to get a version of what you want, without you having to quit your day job and your health insurance. (You can also do it the hard way and just power through and sacrifice your health, which I did for years. I don't recommend it, but it is up to you. Hint: I instead recommend heavily utilizing the internet.)
And at that day job, when you're feeling up for it, you can fight to make things better for yourself. Fight for telework, alternative work schedules, or whatever you need at work, and recruit others to help fight with you--you are often secretly surrounded by sick people. And when you're truly too tired to fight, take a break, TAKE A SICK DAY, take a nap, take a Netflix.
Fight for a doctor who respects you and cares about you, who can stand to be questioned but also has the patience to professionally argue with you when she thinks she's right. And this isn't a necessity by any means, but it's never a bad sign if you ever burst into tears in front of your doctor and she (or he) gets visibly verklempt, too.
You do NOT have to sacrifice everything else in your life (including your social life, your energy, your paycheck) to be healthy, or to come off your IBD meds to finally prove to yourself that you're not "broken," that you can be "normal." But it's also reasonable to try to a point; everyone's IBD is different. You don’t owe anything to anyone (including yourself) besides doing what you think is right for your life.
You don't need to follow any of this advice on this blog, basically, or anyone else's, if it doesn't feel right to you. Take care!