I was used to being the new kid, but this was untrod territory. With five moves under my belt by the time I was fifteen, I thought I’d become an expert in building quick friendships (and adopting grandparents everywhere). The library and church were go-to places to find my people.
The difference in this move to Arizona’s varying shades of brown was that this time, I was chronically ill. As a bedridden teenager, there was no way for me to meet anyone new. Chronic illness limits accessible social interaction.
And even if I were to miraculously meet someone—perhaps in the doctor’s office waiting room—chronic illnesses are often invisible. How is one spoonie to recognize another if they happen to make it out of the house at the same time?
Isolation is the chronic illness warrior’s worst enemy.
I lay on my bed, listening to the household sounds of everyone else going about their lives. Due to my health, there was little I could do. But I could type. So I started tapping out blog posts and joined an online class . . . where I met my best friend.
As Esther puts it, “After a week of texting, we commented that it was like we’d found a long-lost sister. Since then we have become like sisters in every sense of the word, sharing all of life’s hardships and joys together.”
Facing our own chronic illnesses, our friendship became a lifeline. It still is, multiple diagnoses and seven years later.
Today, I want to help you find that lifeline—someone who will truly understand your experience. Not only that, I want to give you tools to build a relationship to last the rigors and rollercoasters of chronic illness.
How To (Practically) Find Someone Who Understands
Online Forums: When chronic illness takes away your mobility or energy, one of the biggest relational challenges is that you simply aren’t in the room with other people. There are no hands to shake or tables to join when you’re housebound. So how do we get ourselves “in the room” with other people?
The way Esther and I did so was with typed words in a virtual “room” with like-minded people. For the chronically ill Christian, two online forums I recommend are:
- Focus Fix Community: This is an online Facebook group centered around monthly spiritual encouragement resources.
- Diamonds Conference Community: This is a private Slack community centered around a twice-a-year online conference for Christians with chronic illnesses, but active all year.
Support Groups: Imagine if you could sit down at a table and not need to explain your insulin pump, your food restrictions, or the cold pack for your migraines. Imagine a group of people who spoke your language. And not just one person, an entire room full of people who understand.
To the lonely chronic illness warrior that sounds laughable—that was totally me. But there are support groups for chronic illness warriors. You just need to know how to find them. You may be able to find local ones with simple Google searches or by asking a local librarian or church secretary.
For those who live in smaller towns or who can’t get out of the house, there are also online options. Facebook has dozens, many specialized by type of chronic condition. However, if you don’t want to look that far, a great place I’d recommend is Esther Smith’s Seen and Known: Small Group Support for Chronic Illness and Chronic Pain.
Social Media: The ongoing joke is that social media is the furthest thing from meaningful, social connection. Yet I’ve found spoonies on social media who have encouraged me in friendship for half a decade.
Chronic illness tends to send people online when they’re housebound or hospitalized, and social media is the first stop. If you’re not sure where to start, try searching these hashtags:
- #spoonie
- #spoonielife
- #chronicillness
- #chronicallyill
- #invisibleillness
- Or, search for a hashtag for your specific disease or condition
Word of Mouth: I kept hearing about Mindy from everyone. “She’s chronically ill, like you,” they said. Eventually, enough people gave me her number that I used it. Her text back said everyone had been telling her about me.
I don’t know what Mindy was expecting, but I didn’t realize that I’d be making such a close friend who would fight with me through thick and thin.
It can be frustrating when people categorize you as “the sick friend” but don’t immediately discount their connections. It’s even worth it to ask around if someone knows someone in a similar boat. Statistically speaking, they do!
How To Navigate Common Obstacles
Finding a friend who gets it is only the first challenge. Next comes maintaining a relationship when you’re both limited in energy and physical ability. Let’s look at ways to overcome some common obstacles.
Be Creative With Inconsistent Capacity
Canceling plans is the subject of many chronic illness memes for good reason. Health is simply unpredictable and therefore it’s challenging to plan ahead. But then you put two chronic illness warriors together and it doubles.
When you’re in relationship with someone who is chronically ill, creativity is vital. Remember Mindy? Well, when we finally got connected via our friends, we tried to set a date to meet up at a coffee shop. But due to the unexpected nature of our lives, it just wasn’t working. Instead of giving up, we adapted. We met first on video call despite living a short drive from each other, and so began our long friendship.
Having adaptable activities and schedules will help you maintain your friendships in the ups and downs of sickness.
See The Person Beyond The Illness
One of the dangers in relationships between two chronic illness warriors is the tendency to focus only on health-related things. Since chronic illness influences all areas of life, it’s so refreshing to talk with someone who understands. But we don’t want to make our chronic illness our identity—or see our friends that way either.
There is more to both of you than simply your illness, and connecting beyond a shared set of symptoms is what will keep a friendship going when someone flares, someone begins to recover, and other life events occur.
Reject Comparison
The fastest way for distance and aggravation to develop in a relationship is through comparison. When we compare our experience of chronic illness with someone else’s it leads to:
- Judging someone you think has it easier than you
- Shaming yourself because you think someone else is handling things better than you
- Not seeing and understanding others
- Sending your self-worth down the drain
The result of every single one of these is distance and lost friendship.
It’s impossible to judge whether one person has something worse than someone else because there are too many factors. How do you compare chronic nausea to chronic migraines? Add in different family backgrounds, support systems, and medical teams and even if two people had the exact same diagnosis, their experiences would be vastly different.
Instead of wondering who has it worse or who is handling the situation better, let’s rejoice with those who rejoice and mourn with those who mourn.
Share Honestly Without Fear
This is tied closely to comparison. For a long time, I hesitated to share the difficult things going on in my life with my best friend, Esther. I didn’t want to burden her when she was already going through so much. But she would do the same thing, staying silent in her suffering, and it left us stuck. We needed each other but our efforts to protect each other were breeding isolation.
So we made a pact. No matter what the other person was going through, we would share honestly with each other. If one of us had something hard, we determined that it didn’t mean the other needed to conceal the good things happening in her life. If we were both struggling, we would choose to struggle together.
A Place To Start Your Search
Relationships between chronic illness warriors can be challenging, but they are so worth it.
When I began to make friends as a bedridden teen in Arizona, I realized I wasn’t alone. There were millions of other chronically ill Americans feeling just as lonely as I was. So some friends and I started the Diamonds conference.
Diamonds is a free, online conference for Christians with chronic illnesses run by Christians with chronic illnesses. I shared a lot of resources in this article, but if you need a place to start, I hope you’ll hop on the Diamonds community and say hi. I’d love to meet another fellow chronic illness warrior.