“Did you really just joke about that?” 

My friend and I turned around, and I laughed. Yep, we did just joke about death and serious illness. My new friend Kelly is a medical professional and I was a chronic illness professional, so to speak. We were both faced death and sickness in our everyday lives and were excited to have finally found someone who shared our dark humor.

The medical world is its own subculture in so many ways. We have our own ways of relating, coping, and communicating. We speak our own language. We deal with situations and social situations that don’t exist in normal culture.

I’ve grown up in a variety of cultures. I’ve moved around the United States a lot. I’ve lived in South Korea for five years. And through that, I’ve faced some culture shock. I’ve struggled to adjust to different ways of doing life without offending or embarrassing.

It has made me into what is called a Third Culture Kid and given me some unique strengths and abilities. But as I started to heal from my long term illnesses, and began trying to reenter the real world, I found myself struggling to adjust all over again — in a way that I can only describe as culture shock.

For years, I had lived in a world limited to my bedroom and doctor’s offices. I fluently spoke medical terminology, but reentering the general world, I found myself Googling the abbreviations and pop culture references my new friends were using. Literally. 

I had an abundance of yoga pants and baggy t-shirts, but nothing with style. I could care less about the trivial issues most people were dealing with in day to day life. How does one transition from living each day in perpetual life or death situations to being a typical American who is grossed out by blood?

It’s been weird. And I know I’m not the only one wading through these waters. So here are six tips I’ve discovered for dealing with culture shock as a chronic illness warrior.

• Don’t judge

People are going to seem petty and ignorant. There are so many times when I’ve watched a social situation unfold or watched someone lose their cool over something that isn’t life-threatening and my eyebrows have gone up.

I get it. But just because people haven’t lived through what a chronic illness warrior lives through doesn’t mean that they are petty or ignorant. Most people you meet have gone through some pretty hard things and pettiness is part of human nature — so it’s going to be part of normal life.

• Try to give grace

When my family moved back to the USA from South Korea, people would ask the wrong questions. And people tend to do that with chronic illness as well. They make assumptions based on their experience and it might not fit your reality.

However, to adjust well to non-medical culture, we need to offer grace. One thing I’ve found helpful is to put myself in the shoes of those around me and to remember my own experience. Before I went through a chronic illness and was exposed to the culture of the medical world I had no clue whatsoever about what chronic illness warriors go through.

• Give yourself grace

Transitioning into a new culture — or back to an old one — is no cake walk. It’s easy to feel lonely and lost and out of place. But you’ve been through a lot. Give yourself grace. When you say something wrong, don’t dwell on it. When you don’t understand or relate to something, don’t forget that there is a reason for that. And it’s not that you’re crazy.

• Voice your perspective

As I was first reentering the real world after being really sick for a long time, I kept censoring myself. And that’s probably a good thing. Something common in the medical world is blunt conversations about topics and bodily functions that aren’t socially acceptable anywhere else. Your adjustment will be smoother if you are careful about giving TMI. There isn’t anything wrong with those conversations, they just aren’t as culturally normal outside of the medical world.

However, with that in mind, I have learned that it is important to talk about my life as a chronic illness warrior. It doesn’t fit neatly into typical American conversation and culture. Just like talking about my time in Korea doesn’t. I always feel like people think I’m bragging or being distant when I talk about my time in Korea. But it’s part of my life and it’s part of me.

My illness is as well. No, I don’t dwell on it and ask for pity. I try not to make people uncomfortable. But as I make friends I tell them bits and pieces. I don’t apologize for that part of my story or hide from it. I voice the perspective it has given me. Just like living in a different country has given me a unique perspective on religion, politics, relationships, and life, so has my illness. And that’s not a bad thing. It’s a valuable thing that we should share with those around us as it’s appropriate.

• Find someone you can ask stupid questions

At first, I tried to hide the fact that I didn’t know what people were talking about or didn’t know how to do something because of the time and knowledge my illness caused me to miss out on. But I’ve learned to ask my dumb questions, especially as friends got to know my story and understood where it was coming from.

It might be helpful to even just designate one safe person who won’t judge you to ask your questions of.

When we moved back to the USA after living in Korea, my brother got made fun of because he didn’t know some basic American things. The other kids thought he was dumb. But my brother is one of the most intelligent people I’ve met.

Asking unusual questions that most people know the answer to doesn’t make you dumb. So find someone trustworthy who is fully adapted to the culture you are integrating and ask questions without shame.

• Accept the differences

Chronic illness changes your life. That’s just how it is. Once you have faced chronic illness and been inundated in a different culture, there are going to be differences in your way of functioning and relating to the world. 

That’s not a bad thing. A hard thing, sometimes. But not a bad thing. 

So roll with the punches. Be flexible and adaptable and you’ll be fine. You’re not alone.