8 Things I Wish My 'Lost' Loved Ones Had Known About Being Friends With a Spoonie

beige illustration of a woman with long hair looking off into the distance and thinking
beige illustration of a woman with long hair looking off into the distance and thinking

One of the things I wish I’d known when I became seriously ill was this sobering and heartbreaking fact: you will probably lose friends. I wish that wasn’t the case, but I, personally, have never met anyone with chronic illness who didn’t lose at least one individual they considered a friend or loved one.

I try to remember just how lucky I am that some friends have stuck around, and remain so grateful for them and their presence. Nevertheless, the losses still sting. Here are eight things I wish the “lost loved ones” in my life had remembered.

1. Be. There.

For me, watching friends drift away has been almost as painful as my illnesses. Unfortunately, for a lot of people, once you’re out of sight, you’re out of mind.

Don’t forget about your friend with chronic illness, even if they cannot hang out with you the way they used to. Send a text, an email or a Facebook message. Something as simple as a “Hi, I was just thinking about you today” or a card can go a long way toward making someone feel as though they’re being remembered.

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Extend invitations. Even if I cannot attend, I appreciate that you thought of me and included me in your plans.

2. Hold off on the unsolicited medical advice.

It’s human nature to want to help your friends. When someone’s telling you about their chronic illness, your instinct might be to try to offer unsolicited advice about how to cure it. However, this is the time when it might be better to fight that instinct. A lot of the time, people with chronic illness and disabilities end up fending off unwanted advice from all corners, and it gets draining and frustrating.

When I’m telling a friend what is going on with me, it’s not because I want them to fix it. It’s because I need to talk about what’s happening in my life, just as anyone else does. It’s OK not to have a solution for everything. Really.

3. Let me talk about my illness.

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I know it’s not always fun to listen to someone tell you about their health. I also know it’s hard when a friend is facing an incurable illness and there’s absolutely nothing you can do to change it. It’s something that has a major impact on my life, though, and sometimes I really need to talk about it. Let me share that, the same way you tell me what’s going on in your life.

4. Offer tangible assistance.

“Let me know if you need anything.” You’ve said it, I’ve said it. But the thing is, that’s a very broad offer. It’s actually much more helpful if you can offer specific, tangible things you’re willing to do to help a friend in need. Saying, “hey, do you need a ride to the doctor tomorrow?” or “do you need a buddy for grocery shopping?” goes a lot farther. And of course, it goes without saying, don’t make these offers at all unless you’re fully willing to follow through.

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5. Comparing me to others does not help, so please don’t.

Your friend has just told you, ”I’ve been diagnosed with a rare lung condition.” What is your response?

a. “Oh, I know what that’s like! I cough too!”
b. “My friend is going through ______ and fighting for her life. At least you don’t have that.”
c. “That must be rough.”

If your answer is anything other than c., please reconsider. I need my friends to support me, not to turn my illness into the Sickness Olympics. Every situation is important to the person experiencing it, and they don’t need it minimized or compared to anyone else’s challenges.

6. If you’re sick, let me know before we meet up.

A simple cold might send you to bed for a few days, but it could keep me out of commission for a month. If you – or anyone you live with – have caught a bug, please let me know before we meet up. I might need to reschedule, because catching your flu or strep throat could have serious repercussions for me. I don’t want to postpone any more than you do, but I also don’t want to end up getting sicker.

7. Meet me halfway.

It’s not really all that much fun for me to sit on the sidelines and watch everyone else having a good time. Let’s find things to do that will work for both of us. I might not be able to come to spin class or go hiking with you anymore, but I’d still like to spend time with you. Maybe there are some other activities that will work for both of us, or maybe we could just have an afternoon of Netflix, pizza and good conversation.

8. Wait for me and respect the restrictions I tell you about.

I might not walk as fast as I used to. I might need to wait for the elevator instead of taking the stairs. I might need to sit down and take breaks. I might need to go home early or take a nap. Please don’t be impatient with me if I don’t have the stamina I used to. And please don’t do something like running ahead and leaving me to take the elevator by myself. Wait with me.

If I’ve told you I cannot do something – say, taking stairs or being around flashing lights or eating certain foods – please don’t try to negotiate with me about that. It doesn’t matter if the stairs “aren’t that steep” or there’s “only a little” shellfish in that recipe. I still need to avoid it. I’m not putting limits on what I can do to piss you off; I’m doing what I need to for my health and well-being.

There’s an old adage that people come and go in your life, and sometimes they’re only meant to be present for a set period of time. I think that’s true. Sometimes losing friends is the natural course of events when you’ve grown apart for whatever reason. I sure appreciate the keepers, though.

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