When I tell people that most of my best friends are people I met in an online community and who I’ve never met in person . . . I get some funny looks.
But I suspect the chronic illness warriors reading this get it. It can be difficult for chronic illness warriors to stay connected to their local community. When you’re unable to participate in normal social activities, “out of sight, out of mind” sadly comes into effect. So we make friends online, often with people in the same boats we are in.
We moved states when I was really sick, so for the first few years we were in Arizona, I only really saw my bedroom and the inside of my doctor’s office. Not ideal for making new friends. But a year ago, as my health was improving, I got to start actually being part of the local community.
And after a year, I now recognize people at the gas station. I now know the family my friend just mentioned. I now know the street the woman across the table from me just mentioned. It has taken time, and reentering a community after being so changed by my chronic illness has been interesting, but I want to share some of the things I’ve learned or that I wish someone had told me.
We’ve moved a lot in my lifetime, and entering new communities is something I’ve had a lot of practice with, but doing it post-illness throws a few wrenches into the mix.
- Share your story, but don’t expect them to get it
Entering general society after living purely in the medical world for so long can be a jolting transition. It can be especially weird when your family is already integrated into the local community, and to everyone else you’re this mythical creature they reference sometimes. At least, that’s how it has been for me.
People are going to be curious. And you have a story to tell. You don’t have to share personal things you aren’t comfortable with. But in my experience, sharing my story has really facilitated connecting with my local community.
When I share my story, people are able to understand me a little better. After all, unless someone has even a small understanding of the traumatic last five years of my life, it is going to be hard for them to get to know me on a deep level.
Sharing my story has also helped with the nitty-gritty practical details. My friends help me avoid mold and chemical exposure, and make alternate, accomodating plans of their own accord. They even offer to drive me places. Because I communicated my limitations, they simply adjust to fit my needs without me even having to ask anymore. This makes it way easier to engage with them and with the community.
However, as you share your story . . . know that most people won’t fully get it. And that’s okay. That shouldn’t stop you from sharing your story. But do so without expecting everyone to fully comprehend what you have gone through. Give them grace and time, and know that your story is valuable even then — maybe even more so because they don’t understand.
- Don’t feel pressured to share your story right away
Lonely last winter, I decided to try a young adults small group at a local church. I pulled on my mask as we pulled into the parking lot.
“Don’t feel like you need to tell everyone your story right off the bat. Just have fun tonight,” my dad advised.
So I didn’t. Sharing our stories is a good thing, like we just discussed. But we don’t have to tell everyone everything right away. It’s okay to let it happen naturally instead of spending your entire first interaction with someone explaining your illness. It’s okay to feel out how much someone actually wants to know.
Your story is precious.
- Introduce yourself
This isn’t chronic illness specific, but it’s a huge help when entering a new community or reconnecting with an old one. People tend to be bad at reaching out, initiating, and inviting. It’s just how it is in my experience. As you try to reconnect, you need to be willing to do that yourself. Otherwise, the process is slow.
I know it’s hard. I know it requires confidence. I know it can be scary. But I’ll give you a script:
“Good morning! How was your day?/How is your week going?/How was your weekend?”
That’s it. Just pick one of the three. That is something you can ask someone no matter how well you know them, stranger or close family member alike.
For the shy people or the introverts, that can be scary. But can you manage just ten seconds of courage? I can even tell you how the rest of the conversation will go.
“How was your day?”
“Good.”
They might elaborate on their own, but if they don’t then you can say, “What did you do today?”
Ideally, they will then return the questions, and usually there is at least one detail you can pick up and talk about. Did they say they had a difficult customer at work? Now would be a good time to ask what they do. Or maybe you could share an anecdote about your own difficult customer.
Why am I going into all this? Because I don’t know about you, but after chronic illness I had to learn to have normal conversations again. I had to remember that most conversations when getting to know people aren’t super deep and don’t need to include complex medical discussions. I wish someone had given me a script.
- Reach out to multiple age groups
As I’ve been reconnecting with my local community, I’ve been relearning to be a young adult. Or really, learning it for the first time, since I was barely a teenager when I first got sick. As part of that, I’ve been seeking out friendships with people in similar seasons of life as I am.
You have to be careful with this — we need to carefully guard against comparison. But the sense of normalcy is good for me. Learning to be a young adult with other young adults is a beautiful part of returning to “normal” life.
However, I would also encourage chronic illness warriors to intentionally connect with other age groups, especially elderly people. Chronic illness forces you to mature beyond your years, and connecting with people who have a lot of life experience can help you feel like there are people who understand, relieving loneliness.
- Hang in there
Be persistent. Relationships take time and intentionality. But keep trying. I know it’s hard. I know it can be exhausting. But it is also worth it. We were created for relationship, and as much as I cherish my online friends, God put us in our local communities for a reason. We gotta bloom where we are planted.
So try multiple groups. Persist with people until they start to let you in. Don’t expect it to happen overnight. And through it all — give yourself grace. It’s normal for it to be hard. It’s normal to have to work through things from past relationships as you pursue new ones. It’s normal for a chronic illness warrior to need to learn how to hold a conversation again or get to know someone. What even do people do for fun? I don’t know, I’m learning. And that’s okay.
So hang in there.
