Living a Life of Maybes…

When you have chronic illness, you have to plan out everything in your life very carefully. This is so that you can do as many things as possible. Yet, your body doesn’t always follow the script. Often times, things come up that there is no planning for. A migraine hits, a joints dislocates, the fatigue presses down on you… all things that can come into your life without warning.

This means that everything I plan in my life is a “maybe.” I pencil things into my calendar with the plans for that day, knowing that it is really a “maybe I will be able to do this on this day.” But those that I am making these plans with often don’t understand living this life of maybes.

Maybe doesn’t mean that I don’t want to do it. Maybe doesn’t mean that I am looking for an out. Maybe doesn’t mean that I am unable to commit. Maybe means that I have an unpredictable body and I am forced to follow what ever rules it sets. Maybe means that I want to do things with you, but I have to be realistic and admit that I might not be able to that day. Maybe means that shit happens.

In truth, this is the nature of all social planning. Whenever we make plans to go out with our friends, there is an understanding that things could happen and one or both parties might need to cancel. No one would be upset with a friend for canceling going to the movies if they got in a car accident. Why then do people take it personally when those with chronic illness have to cancel frequently?

I think this is complicated. Some of it is about trust. Do they believe you when you provide your reason for cancelling? This is why I think it is important to be honest about having chronic illness and how it impacts your life. It can be difficult for our friends to believe that we are feeling poorly that day if we never let them see us at our worst. If we always wear the “I’m ok” mask and only let them see us on a good day, it can be hard to understand the way that chronic illness impacts our lives. Let them come over when you are retching your guts out or struggling to stay awake. If they are a real friend, they will want to be there for you even on these bad days.

Some of it is about them. Everyone has a degree of social anxiety. We always ask if the other person really likes us or is really interested in the same things as us. So, when someone cancels frequently, it can be easy for a person to question if you are really their friend at all or if you are making excuses to avoid being around them. Humans are inherently insecure creatures. If you’re too tired to go out, invite them to come over for a night in instead. Just warn them you might fall asleep during the movie. But this will reassure them that you want to be around them.

I think some of it is also about not knowing what to do about having a friend who is always sick. No one likes feeling helpless and lets be honest, in the face of chronic illness we all kinda are. But maybe there are things that those helpers in your life can do. Instead of just shutting them out, let them know that you could really use help with the laundry this week or grocery shopping.

In the end, I think the only thing that we can do is open the door with conversation. If we think a friend is getting frustrated with our frequent cancellations, all we can do is talk with them about it. Ask them how they are feeling and what they are thinking. Opening that door goes a long way to maintaining friendships in this complex life of maybes.

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