My Daily Dilemma: The Impossible Choices of MS Life

Would you rather. This was a game I used to play with my siblings and with my friends. I remember it being pretty fun! My youngest daughter, Maddy, really enjoys it right now. You know the type, “Would you rather have a nose as long as your foot, or a foot as long as your nose?” 

They’re funny options, and not based in any kind of reality. There’s also not a real risk. It’s not like if you choose to your nose size suddenly changes. Although, that is a funny image… 

Recently, my “would you rather” game is not quite as much fun as it was in childhood. 

Maybe you will indulge me and play along? Let me share a few “would you rather” choices I have been experiencing, and you can consider what you might choose. Similar to the game we played as kids, there is no choosing both or neither. 

Would you rather with MS. 

Would you rather truthfully answer “how are you?” with the full struggles you feel to be told to “look on the bright side?” OR avoid your favorite hobbies because you don’t have the energy?

Would you rather deal with constant pins-and-needles in your hands and feet, OR have your legs feel so heavy you can barely lift them to walk?

Would you rather sit, but have both of your legs go numb with pins and needles, OR stand and feel like you’re going to fall because you’re so unsteady and dizzy?

Similar to the original game, there’s not a right answer to these dilemmas. Personally, I have been struggling to find positives of these options. 

These choices are a constant reality for me. As adults, we are forced to make choices about our money, our time, or our life. The other we get, the more responsibilities we have, and the more “would you rather” dilemmas we face. 

Then, when I was diagnosed with MS, I learned how complicated this no-win game becomes when chronic illness is added to the mix. This morning, my “would you rather” question was one I have been having more and more recently. 

Would you rather skip a shower this morning (again) because when you stand you get very dizzy OR Take a quick cold shower, and then lay down for a few hours to recover afterward. 

I’ve been taking a lot of baths these days because of this dilemma. My thought is that it would be easier and maybe even safer than the shower route… so that was what I picked. I know, that wasn’t one of the options, kind of breaking the rules already. 

Then something unexpected happened. Not quite as unexpected as when I dropped my computer into the bath (read the story here) but unexpected nonetheless. 

I learned another would you rather question. 

Would you rather have a bath that is chilly, and you end up shivering, OR a warmer bath that makes your legs and feet go numb?

For my bath this morning, I got to enjoy both.

I started with a cool bath, because I know that heat makes my symptoms worse. This is part of what makes showering in and of itself hard. Soon, I noticed I was too cold, and began shivering. I let some water out, and added warmer water to try to correct this. Just like that, I got numb legs and feet.

Truthfully, it kinda sucks. I don’t know what will be better, or what I will choose next time.

I didn’t wash my hair, because tilting my head back, which is what I would need to do in the bath to wash my hair in the bath, makes the room spin and makes me nauseous. It’s been over a year, and I haven’t found the best answer to this question yet.

Things get more complicated when you find out that this is like playing a game with a three-year-old. The rules to the game don’t make sense, and are made up. Once you think you have them figured out, they change, leaving you to believe the only goal is for you to lose. You also, for some reason, keep believing you can find the “right” solution, or win somehow.

What about this one? 

Would you rather walk with a cane OR cancel plans, and stay home to avoid being embarrassed? 

This game is rigged. Not only is there no winning the game, but it implies that you actually have a choice. The reality is, most of the time we don’t. Often we are bombarded with both “options,” without control or consent.  

The next “level” of the game involves connecting with others. 

I love connecting with others. I have been social since birth, apparently. One of my mom’s coworkers even gave me the nickname star. (Read more about that here) So, it’s hard for me to consider choosing not to connect with others. Which brings us to another “choice.”

Would you rather truthfully answer the question “how are you?” with the struggles you’re experiencing, making others uncomfortable, OR nod along when people give you suggestions about what you should do to fix your chronic illness? 

This one has been extra hard for me. I know “how are you?” is often a casual greeting. I’ve spent a lot of my life using it, and at times I still do. 

I’m noticing when others ask me now, “how are you,” it makes me consider the question. Most of the time, “not great,” would be more accurate than “good.” That question used to be so casual, and now it feels so heavy. 

Would you rather be honest about how you’re doing and make others feel awkward OR carry the weight alone? 

I don’t know about you, but I don’t want to do either. I wish I could truthfully answer, “I’m good,” and not have to try to pick between these options. 

I’ve noticed that often when I am open about how I’m doing, there are a few themes of how others react. Often, I can tell they feel uncomfortable, and they probably just want to help me. I appreciate that people care, but the problem is I can’t be fixed. When they try, I often leave the interaction feeling like I am doing MS wrong, or I am not trying hard enough.

When people say things like, “you should try this new diet I heard about,” or “have you tried yoga?” I think they want to help me. Either that, or they feel uncomfortable about what I am sharing with them, and just want it to stop. The problem, it is lonely to have a problem that can’t be solved.

Would you rather tell someone, who genuinely cares, that you do not want to hear their “shoulds” about your health OR feel judged or blamed for your symptoms or struggles? 

Neither, right? Me too. 

I have done a lot of research, I talk with doctors, and I probably understand what is going on for me and my body better than the un- or misinformed caring people who are trying to solve MS for me. I even have gratitude and compassion for their effort.

However, there are two problems with this plan, 1. These solutions are not actually as fool proof as they might seem from the outside, and 2. “Should” implies that I am doing something wrong, and actually makes me feel more isolated or shame. 

Per usual, I started this post without being sure where I was going. I’m still not totally sure, but I do think it’s important to acknowledge the power of shoulds. Also to acknowledge that they come from loving people, and the intention is not to make me, or anyone else, feel worse.

Whether they are directed to others, to ourselves, explicit or not, fault is implied. That’s not a helpful thing to do to ourselves or others. Instead, we would be better served to validate the difficulties, and not jump to problem solving. 

That’s not easy. It sucks. Even more reason for us to do what we can to connect. I really like the way Brené Brown explained the difference between empathy and sympathy, and the cute that cartoon that goes along is fun too. Click here to watch the video.

So, one more final question:

Would you rather inadvertently leave your friend or loved one feeling more lonely or unable to share how they feel with you but give them advice about what you think they should do to fix an unwindable problem, OR do your best to validate them, listen to their feelings and sit with them in their struggle, and not feel obligated to share a solution?

Links from earlier in the post:
MS Doesn’t Care: My Comedy of Errors
From Bar Fights to Bathroom Stalls: The Unraveling of “Star”