One of the worst phrases I have ever heard about my illness is, “It must be nice to stay in bed all day.” I know this is something someone probably says in passing after they had a long day. It is a phrase that makes sense to someone who always recovers from their sickness – be it a cold, pneumonia or the flu. For most healthy people, sickness brings a reprieve from the hustle and bustle of life. They get to enjoy a day of Netflix and laying in bed.
For someone whose chronic illness causes them to rest a majority of the time during a flare or even indefinitely, laying in bed is not nice. It sucks. If I am forced to stay in bed all day, it is typically because I am in an immense amount of pain or my body is so fatigued I can’t even walk five feet. On those days, all I want to do is get up and go somewhere or do something. I’d like to be in school. I’d like to go to the track and walk a couple of laps. I would love to be hanging out with my friends. But I can’t. I physically cannot. Staying in bed is not a break. The days when I have the energy and wellness to get out and about are days of reprieve for me. It’s the opposite of what a healthy person may feel.
Now, don’t get me wrong. I do not believe this phrase is said out of malice. Some healthy people truly believe those with chronic illness have a nice excuse to get out of real life. They don’t realize most of us would give anything to be able to go to school full-time, work or live a normal life. There are some days when I do get to lay in bed that feel like a break, but most of the time when I’m tied to the bed I’m having a worse day than when I can go out.
If we have to cancel plans, please don’t say this. As an alternative you could say, “I’m sorry you have to miss (activity) because of your illness again. I know it is hard for you.” Words can have such an effect on people. Switching these two phrases could mean the difference between someone mentally feeling OK despite their physical health and someone beating themself up because they feel like they messed up. I can’t control my health. Believe me; I’ve tried. But a saying such as, “Wow, it must be nice to stay in bed all day,” carries much more weight than you could ever imagine. It makes me feel as if I’m choosing this life or I am to blame for it. Neither of those things are true.
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All in all, be kind.
All the love and spoons,