Some days, my relationships seem like a string of transactions and scheduling. Chronic illness ramps up these less-than-sexy aspects of relationships. Being sick requires more planning, more appointments, and often less doing. So how can we maintain and celebrate the truth of our relationships (whether friendships, romantic, family, etc.) without letting illness dominate the routine and conversation?
1. Pitch in when you can
When illness flares, we tend to ask a lot of our relationships. In order for our needs to be met, we have to ask for things we wish we didn’t. Maybe we need help preparing meals or cleaning up. Things like walking a dog, doing laundry, and calling doctors can be very spoon-sapping, and may require assistance. It can cause guilt and strain, and fear that the other person resents us for being so needy. One way to smooth over those tougher days is to pitch in when you can! Recognize when you have extra spoons, and think of something nice you can do for someone who has helped you out. Offer to do the dishes or make dinner. Cover for someone at work. Obviously, stay within your limits — you don’t want to use too many spoons and end up crashing and needing help all over again! But if you show that you do want to help when able, even in small ways, it will help those around you be more eager to step in for you, and will ease your sense of guilt.
2. Say thank you instead of sorry
What a challenge this one is! We tend to apologize for things that are really not our fault or in our control. Sorry I made you leave the party with me when I got so sick! Sorry I don’t have enough brain to have a good conversation. Sorry you had to help me carry my wheelchair up the stairs…
Apologizing sends a subtle message to the other person, but also to yourself, that you have done something wrong, that your actions were a problem. Living within systems that are not accessible to your body, and then asking for what you need, is not doing anything wrong! What if, instead, you said thank you? I felt so sick at that party — thank you for taking the time to help me get home! Thank you for helping me laugh at myself when I say silly things and understanding that conversations aren’t happening today. Thank you for carrying my wheelchair; hopefully the next event we go to will have a ramp!
3. Honest communication
When relationships get sticky, you can typically trace it back to a moment in which someone was not open and honest. It’s so difficult to honestly express when you feel hurt, or when you worry you are a burden. For caretakers and allies, it can feel terrible to express when helping you makes them sad or means they don’t get their needs met. Whatever the situation, leaving these things unsaid often leads to resentment or fear, which will hurt more than having boundaries and expressing how you feel. Also, if you need an accommodation, sharing what you need openly will likely go smoother than pretending everything’s fine and then running into a problem that requires more of the people around you.
For more on how to have this kind of open communication, check out our Guide to Difficult Conversations!
4. Build supportive routines
Communication is great! But… it can also be exhausting. If I had to communicate every need every time I interacted with people, I would stop trying to see people. Communicating well on a good day is key; come up with guidelines and set routines so that, the next time you hang out, accommodations can be made without the chat. For example, setting up a date night every Wednesday takes the stress out of scheduling. It’s easier for friends to invite you out if they know your list of safe restaurants. Letting coworkers know that you will be out of commission for a bit after lunch each day can help set the pattern of scheduling meetings in the mornings.
The people who step up to support us do so because they love us! With all the challenge of living with a chronic illness, the heart of those relationships – the parts of the relationship that bring us joy – can sometimes feel far away. Cut through the clutter of illness to rediscover the heart of relationships you love!
Do you have any tips for how you find joy despite illness? Let us know in the Friends in the Fight facebook group.