Most people who’ve lived through an illness come away with a new perspective on life, or other takeaways that stay with them. It’s no different with inflammatory bowel disease (IBD).

After a ridiculously healthy childhood, with perfect school attendance awards in hand, I was diagnosed with ulcerative colitis (one form of IBD) at age 16. I had no way of knowing what the future held for me, or how my life would be affected by the diagnosis.

IBD is a chronic illness, meaning that it never leaves you, no matter what the wellness industry says. That doesn’t mean it can’t be well controlled, especially with improved treatment guidelines and medications.

Even so, people with IBD go through periods of wellness and illness. They can be major, taking us out of life, or minor, taking us out for a day or an afternoon.

Sometimes I see people diagnosed after the 1900s say there were no resources. That’s not true: online resources existed, and I found them starting in 1999. I myself started blogging in 2000, so if you couldn’t find me, that was a discoverability problem, not a resources problem.

In 1989, there truly was little to go on for a teenager. No support group at my local hospital. No community group at my college. No playbook, no internet, and no community.

I took it one day at a time, living from flare-up to flare-up. When I was well, I worried about the next flare. When flaring, I worried about the effects of steroids and being taken out of work or school.

I was in my 20s when my genius surgeon took out my colon and created my j-pouch. That afforded me the ability to reflect on what ulcerative colitis taught me, and how it formed and changed my personality.

Here’s what I’ve learned.

1. Be Aware of What Can Change

You often hear people say things like “enjoy every moment,” and while that makes me cringe, I’ve also taken that to heart. One thing about a disease like IBD is that you never really know what it’s going to bring you next.

I’ve had my j-pouch long enough that it’s probably a good bet I’ll continue to do well, but that’s no guarantee. In recent years, I’ve developed complications related to IBD. I had to go on an advanced therapy, all the while re-educating people who claim a colectomy is a “cure” for ulcerative colitis.

Thankfully, we have advanced therapies: being diagnosed in the pre-biologic age, I know how important they are. Without them, I likely would have had more surgery. I just don’t know what’s next, and so I do try to savor the moments where I’m pain-free and able to function.

2. Have a Cocktail and Eat The Cookie

Many people with IBD have a complicated relationship with food. Eating right matters for better health, but food should also be enjoyed. I have dietary limitations, like most people who’ve had surgery on their intestines. Still, I can tolerate a lot more than I could when I had ulcerative colitis.

Before my colectomy, I went weeks eating nothing but liquids or eating nothing at all. That was largely in a last-ditch effort to avoid symptoms. I know that people still do this today, relying on restrictive diets.

We all have to do what’s best for us when it comes to diet. But my official position is that I eat for health 80% of the time. But I also know I’m going to die one day, no matter what I eat. The other 20% of the time, I’m going to socialize, make cookies with my kids, and clap out the candles on my tiramisu birthday cake while I can.

3. Moving My Body As Much as Possible

I didn’t always exercise — and I’ve gone for long periods without exercising. When I feel well enough to do anything, even just a walk, I do it. I have always flirted with strength and resistance training, but now that I’m over 50, I’ve gotten more serious about it and do it 2-3 days a week.

Physical activity is the best thing I can do for myself to help prevent other health problems that tend to affect people as they get older. I do what I can, when I can, because I know that an injury or other health problem can easily crop up, and having a stronger body will help me.

Plus: a little wander outside every day is good for my stupid mental health.

4. Practicing Patience

I’m not patient.

Not everyone spends their young adult years in and out of the hospital. My experiences sometimes get in the way of my developing relationships with people who don’t seem to grasp the big picture.

It’s easy to get bogged down in the daily difficulties of life and to forget that every day without pain and disability is a good one. After you’ve been sick, it can be hard to find compassion for other people’s problems. They may seem trivial.

But my view of other people’s problems doesn’t matter, and it isn’t what’s important.

Everyone has challenges in life. I don’t lead conversations with mine, and I don’t make all of my experiences public. I remember I’m not in a contest to prove anything, and even if a problem seems less serious than those I’ve experienced, I should still offer support, patience, and empathy.

5. Leaving Messiness Behind

Because my world could change any minute, I’ve learned to be frugal with my energy and put it behind what really matters to me.

I don’t have time for messiness and drama.

I can’t put time and effort into something that doesn’t make sense for my family and me, and sometimes that means leaving things behind. Sometimes it means saying “no,” deleting an email, or not answering a DM. Not everyone understands this, especially when goals differ, and I can’t help someone achieve theirs.

Living the best life possible, with as few stressors as possible, is more important than what strangers think of me or my decisions.

6. Making Time For Who And What Matters

For years, I declined invitations and severely limited my social life. Now, when a friend wants to go for a drink, go shopping, or almost anywhere, I’ll do everything possible to say yes.

I always have deadlines, chores, and so many other mundane things that “need” to get done, but I’ll drop them all to spend time with the people who matter to me. I don’t know if there will be another invitation, or if I’ll be well enough to drive, walk, or eat, so I’m taking the one offered today, and I’m not looking back.

Everyone will have different takeaways from their life with IBD or another illness. I’ve chosen to prioritize family and travel over other things in my life, but you may have other goals. The important thing is knowing what you want out of life and deliberately moving toward it. IBD may get in your way, and you may have to readjust, but keep moving toward building the life you want for yourself, because I can guarantee it won’t happen any other way.