Making Plans When You Have Fibromyalgia

By: Dr Alexa James

Plans to make. Could be awesome. Awesome. For days, weeks, months or even a year, you can plan something. Plans for the same day can be made quickly. Planning is a very normal part of being a social human being, quite necessary.  However, plans can be stressful and full of anxiety if you have fibromyalgia.

You don’t know how you’ll feel minute by minute, let’s say a day or more. Personally, because of my uncompromising pain I feel like I have dropped so many people. It’s not fair for me or with the people with whom I plan. It’s difficult to explain completely to anyone that yesterday, I felt good. I went out and had a wonderful time yesterday. Now, however? Well, half of my body is stupid today and the other half is very painful.

It always appears to be a pretext. Like that person, you want to get away from plans. But that’s the truth farthest away. Birthday parties, family time, concerts were missed. I missed happy hours with good friends and simple nights out at the bar. I had to sell tickets for events I was looking forward to. I missed networking events that might have been great connections for my working life.

You want to not cancel. You want to cancel. There are tears and emotional pain behind cancelation as there is physical pain. Cancelation of plans means people are dropped, and I hate that feeling personally. I thrive to be there, to support and encourage people in my life. Feel like a sinking and guilty feeling for missing bands or scheduled events. It’s so disheartening that even there is a low-key night to eat and drink.

If people could see my pain, it would be different. It was a legitimate reason I could send a picture proving this. My pain is invisible instead and can easily be rejected as “fake.” It was because I was hung over (which I would totally own if I were cancelation plans), or because I found anything that I had better to do, or just did not want to see them. I’ve had some people wondering my pain and asks if that was because I was hung over it.

It’s not fun to question your integrity.

Cancel plans / leave early to anyone with an invisible disease: be patient. Be comprehensive. It’s frustrating, we know. For us, it’s awkward. We don’t want to let you down. We don’t want to let you down. We push ourselves to plan and try to do everything. With a bad day and a flare-up, the time is always terrible. We can’t control it, please remember. If we were able, we would definitely not live this way in life.

We know that it sucks, is frustrating, and affects us not only. We won’t be egoistic and we don’t do our best to be egoistic.  Please cut us some slack next time we have to cancel. Do not lie and tell us if you don’t or tell us that it’s all right if it isn’t. It’s fine. Don’t make us feel worse than we already do, however, please.

If (all right, when) we have to cancel, ask if we need anything if possible. Propose a sweatpant night on the couch. Pick up dinner. You cannot always rearrange and rearrange, and we do.

All we ask is a little comprehension and forgiveness so that we try to understand and forgive.

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