What I Wish My Friends Understood About My Illness

One of the things I’ve had to adjust to recently is planning my life around my illness. I know now that if I go out, the next morning will be a write-off  – even though I’m in bed by 10 p.m. A full day trip will probably mean two days in bed. As someone who’s a planner, this hasn’t really bothered me. It’s not just me who has to cope though, my friends are being affected too.

As long as I know what I’m doing, I’m OK. I can manage the exhaustion. I can plan recovery days. I can cope.

Explaining this to my friends, however, is really difficult.

“It’s only a coffee or lunch.”

What you see as only a coffee trip, for me is a full day exercise. Ten minutes walk to the bus, wait for the bus, 20 minute ride into town, 10 minute walk across town. You get the idea. I’m exhausted before I get there.

Then I actually have to have the coffee, sit down and make conversation, and try not to mention how tired I am as this is meant to be a fun, relaxing social occasion.

Lunch is worse. Evening meal is worse again. Even someone coming to visit me without warning can be hard work. Am I vaguely clean? Do I have something to feed you? Do I have the energy to make conversation?

There seem to be two alternatives:

1. I say no. That is not fun. I want a social life. I deserve a social life.

2. I plan my life with military precision, and make sure my friends do, too. Which for me is fine, I can do that. For everyone else, it’s like booking a doctor’s appointment, “I’m sorry, no availability for the next two weeks, please ring back soon.” Annoying enough when it is the doctor, worse when it’s a spontaneous coffee trip with a friend.

To my friends: I understand if you’re annoyed, or frustrated, if you feel like I’m putting you off. I know I didn’t used to be like this. But please understand, this is how I have to live, this is the only way I can guarantee I get my university work done, go to interviews, and I manage to eat. Please just bear with me. I’m doing my best, and I’m sorry.

This post originally appeared on POTS & Spoons.

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