When MS Stops You From Being There
Last updated: May 2023
While reading through our forums the other day (and I can’t recommend them enough, we have some great discussions there!), someone mentioned their concern over being able to attend an important family gathering. Not only were they concerned about making it for their own sake, but they also mentioned that they feared the backlash they might get from their family for not being there.
This really hit home for me, as these are common concerns for me as well. MS forces many of us to miss out on key moments in life, a fact that hits back at us in multiple ways.
MS symptoms can be notoriously unpredictable. I can feel pretty good one minute and end up laid out on the couch the very next (many times, the process of getting ready stops me in my tracks). So I end up canceling my plans at the last minute. Other times I make the hard realization that, no matter how prepared I am, an occasion may be too difficult for me to attend. Traveling is extremely difficult for me: the weather could be too warm, the venue may not have enough seats, and so on. There are a lot of conditions that I need to meet in order to successfully attend something.
All of that means that I miss out on a lot of occasions. Weddings, birthdays, graduation parties, concerts, and even dinners with friends. Living with MS has meant that I miss out on a lot of occasions that my friends and family may be partaking in.
As accustomed to it as I am, it’s still something that can occasionally make me feel upset. I get bummed that I am missing out and can’t be there with everyone, but also that I am letting others down. Missing things and feeling bad about it is so common for me because of MS, and it’s something I’ve just never been prepared for or expected when I was diagnosed.
Adding insult to injury, there are times when we have to cancel or not attend something, and it’s not well received. I’ve missed many occasions where the reason for my absence was not understood. Even though it’s not my fault, the emotions of a moment that is special to someone can make it difficult for people to understand.
I’ve heard my fair share of nasty responses when informing people I can’t attend. I’m usually sympathetic to their comments; after all, I already feel bad about not being there. It’s frustrating, though, and makes me feel even worse than I already did.
The story discussed in the forums that I mentioned earlier made me think about some specific situations that I may someday have to deal with. Namely, traveling for the funerals of loved ones who live pretty far from me. That seems like an odd and morbid thing for me to worry about, but it is clearly an issue that others like me have to handle and one I may also have to deal with at some point.
Could I possibly travel many states away, on short notice, to a beloved family member’s funeral? At this point in my life with MS, I don’t know that I’d physically be able to. That’s a harsh realization. Along with that, what would the backlash be for not going? An already emotional moment like that could really strain some relationships in the aftermath.
The sad thing is, that while it’d be nice for people to be more understanding of our limitations, most of the time everyone’s feelings are legitimate. Being absent because of MS is tough on everyone involved. This situation demonstrates, once again, how it’s not the person with the disease that gets impacted, but their friends and family as well.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: