Making plans. Can be great. Exciting. You can plan something for days, weeks, month, or even a year. You can quickly make plans for the same day. Making plans is a very normal, and pretty necessary part of being a social human being. However, when you have fibromyalgia, making plans can be stressful and full of anxiety.
You never really know how you are going to feel minute to minute, let alone a day or more out. Personally, I feel like I have let down so many people due to my inexpiable pain. It’s not fair to me, or the people I am making plans with. It’s hard to fully explain to someone that yes, I felt fine yesterday. I went out yesterday and had a great time. But today? Well, today half my body is numb and the other half is in extreme pain.
It always seems like an excuse. Like you want to get out of plans with that person. But that’s the furthest from the truth. I have missed birthday parties, family time, concerts. I have missed happy hours and simple nights out at the bar with good friends. I’ve had to sell tickets to events that I’d been waiting to go to. I’ve missed networking events that could have been amazing connections for my professional life.
A lot of people picture this:
But, it’s really a lot more like this:
You don’t want to cancel. There are tears and as much emotional pain as physical pain behind canceling. Cancelling plans leads to letting people down, and I personally, hate that feeling. I thrive off being there for the people in my life, supporting them, encouraging them. Missing bands gigs, or planned events fills me with such a sinking and guilty feeling. Even missing a low key night to grab dinner and drinks is so disheartening.
It would be different if people could see my pain. I could send a picture to prove that it was a legitimate reason. Instead, my pain is invisible, and can easily be dismissed as being “fake”. I’ve had people question my pain, and ask if it was because I was hungover (which, if that was why I was cancelling plans I would totally own up to it), or if I was cancelling because I found something better to do, or just didn’t want to see them.
People questioning your integrity is not fun.
To anyone who has had someone with an invisible disease cancel plans/leave early:
Be patient. Be understanding. We know it is frustrating. It’s embarrassing for us. We don’t want to let you, or ourselves down. We push ourselves to make the plans and to try and do all the things. The timing is always terrible with a bad day and a flare up. Please remember we cannot control it. If we could, we definitely would not be living life this way.
We know it sucks, and is frustrating and doesn’t affect just us. We don’t want to be selfish, and are doing our best not to be. Next time we have to cancel, please cut us some slack. You don’t have to lie and tell us you understand if you don’t, or tell us it’s okay when it’s not. But please, don’t make us feel worse than we already do.
If (okay, when) we have to cancel, if it’s possible, ask if we need anything. Suggest a night in on the couch in sweatpants. Pick up dinner. It’s not always possible to rearrange and reschedule, and we get that.
All we are asking for is a little understanding and forgiveness, as we try to understand and forgive ourselves.
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