Living with an unpredictable chronic illness like Multiple Sclerosis often means that no matter how prepared we are, we will end up having to cancel plans. Even though I’ve lived with MS since 2000 and have had to bow out of numerous commitments over the years, it never seems to get easy for me. Not only is it not easy, it starts to wear on me. The sadness, loneliness, and (especially for me), the guilt, of making commitments and then breaking those commitments starts to weigh me down. Not only does it get to me, I’m sure that my friends and family also get mentally and emotionally fatigued by the constant and often last minute changes I have to make because of my disease. Like many things I write, I have to point out that this can be true with many chronic illnesses (I find I have a lot in common with others who suffer from things from Crohn’s, Lyme, diabetes, migraines, IBS, etc.).
The problem with plans
For those who have MS or know someone with it, the fact that plans can suddenly get canceled is nothing new. I think most of the other contributors on this site have done at least one article about the need to cancel plans. That’s just how prevalent a problem it is among the chronic illness community. In the case of canceling plans, practice doesn’t make perfect though. I still feel deep regret every time I have to reach out to someone and say I won’t be where I said I would be. My close friends and family all seem to understand and generally feel bad for me. I’m lucky, because I know not everyone has that and canceling so much can be a real strain on relationships. Even knowing they understand doesn’t make this common task easy. It’s embarrassing and frustrating.
Bottom line, canceling plans isn’t pleasant. Missing out on something, whether it be something big like a wedding (the long nature of them and the travel involved in weddings is especially hard on me, I even left my own wedding early because of MS) or small like meeting friends out, can stick with me for a while. Missing out on any one of these moments is tough, but when these missed times start to add up, it can really take its toll. Mentally, I’m worn out by it. I start to feel like I should never even make plans because of the high probability of breaking them. I missed both a wedding and going away party for good friends this past weekend, and it made me want to retreat and hide. Again, I’m lucky, all of these people understand. I’m the one who has difficulty accepting it. It’s very easy to say, well, “I’ll just be a hermit, why even try to maintain a semi-normal life?”.
It’s difficult for us, but it’s hard on our friends and family as well. It’s no wonder that so many battling chronic illness tend to lose friends in droves. Even if you understand, and few do, it’s hard to accept that someone keeps cancelling on you. That someone keeps missing not only the big, but also the small times. That fatigue of cancelling hits them too and eventually good friends become acquaintances and then finally just a name we see pop up on social media. The sad thing is, no matter how understanding someone is, this can still happen. As connected as we are these days, with our smartphones and social media accounts, none of that can replace actually being there for those special moments.
FOMO and guilt
As bad as my fear of missing out is, and as sad as I am explaining to people I’ll be missing out, that all pales in comparison to the biggest feeling all of this gives me: guilt. I feel guilty when I cancel plans. That’s when I start to think that it’d be better to not get people’s hopes up, than to plan and cancel. I also feel guilty because many of these events also include my wife and she either goes alone or doesn’t go at all. Even when she goes, I feel so bad and guilt-ridden that she has to go alone. I find myself wishing I had some sort of surrogate that could go with her in my place. So I know she’d have someone to go with (not that she needs it, she’s pretty independent). I hate thinking of people seeing her arrive and thinking that she got the short end of the straw by being with me. I know that’s probably not what happens, but that doesn’t stop me from thinking it.
I have no solutions to any of this, other than to recognize it, and to talk to your friends and family about it. With so many problems we face, awareness always seems to be the most effective answer. Educate yourself, family, and friends about MS and its symptoms and triggers. Help people understand why you cancel so much. Explaining to them will help you deal with it too. When it all starts to weigh on me, I like to hit up one of my friends who has MS and understands. It’s helpful to me to vent to someone else who experiences all of this. That’s just one reason I value everyone else I meet with this disease. We’re all in this together.