An Inconvenient Sidekick

Think of people that you know who have a habit, condition or lifestyle that has a regular impact on their physical well-being. Runners, yogis, vegetarians, people with allergies, pregnant women. I bet you can think of many, many more. I think of these as sidekicks. My brother and his sidekick, CrossFit. My colleague and her sidekick, veganism. If you have a friend or a loved one with a sidekick, you’re going to know a heck of a lot about it, because you care about that person. Understanding the sidekick is part of your relationship. Sidekicks are often so much a part of a person’s daily life that they come up in conversation all the time. 

Well, here’s the thing. My sidekick is MS. It’s something that has an invisible but constant impact on my physical well-being and my state of mind. You can bet that I’m thinking about it for at least part of every day. But even after a few years, I still struggle with how much to say about it. 

If a runner casually mentions, “I jogged eight miles this morning and my feet are killing me,” you’ll congratulate her or commiserate. If I casually mention, “My symptoms get worse when it’s cold outside and my legs really hurt today,” the reaction is — well, not so casual. Essentially, the needle scratches off the record and a hush falls over the room. People just don’t know how to respond. And I completely understand! I don’t mind talking about symptoms and drugs, but I recognize that it’s not a light-hearted chat. My sidekick is kind of a jerk, and that is an uncomfortable thing to talk about.

There are a few ways I can go with this.

First, I can keep quiet. I do have physical symptoms, but they’re not visible to others unless I’m really, really tired (or have recently skinned a knee). If I choose to, I can easily say nothing about my sidekick and move smoothly through a day that is devoid of awkward pauses. And sometimes that’s what I do. But there’s a part of me that feels isolated when I choose that path. If I’m with friends or family and deliberately withholding something that’s very much on my mind, then I’m lonely in my own space. It’s different for everyone, but for me, part of being human is sharing with other humans. So pretending there’s nothing to say doesn’t come naturally to me.

Second, I can share. This can sometimes be a little bit difficult for me, and from the looks of things, it can sometimes be a little bit difficult for other people, too. I rarely go into great detail about the deep nitty gritty of what MS is like on a day in/day out basis, and certainly wouldn’t do so without some kind of warning. But I do talk about how I’m feeling at the moment, both physically and mentally. Over time, I think most of the people that I’m close to have learned to take it in stride. My favorites are the people who’ve learned to let me actually joke about it, and to give humor back in kind. 

Third, I can split the difference. If I’m with people that I don’t know very well or just don’t feel that comfortable with, I’ll mention feelings or experiences without actually mentioning the cause. If I’m tired, or if I own up to my terrible balance, or if I talk about the fact that I used to run a lot but have given it up, those are fairly benign comments. I’m not hiding anything, but I’m not shutting down the room by inserting my conversation-stopping sidekick either. It’s a happy medium. 

Everyone has his or her own way of dealing with this issue, but I’d be surprised if there’s anyone with MS who doesn't have to regularly think through it. Obviously difficult conversations aren’t limited to MS, either. A close friend really struggled with how much to share when she had breast cancer. Or what about addiction? Or depression? All of these are things that can be private struggles, or can be shared (sometimes in moderation) with the people who we love and who love us in return. Figuring out what to say and when, and to whom is a part of our ongoing work of living with a difficult sidekick. Regardless of how you choose to handle it, I wish you well with yours. 
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Katie

Katie Jennings, Blogger

Katie Jennings keeps busy juggling a son, a husband, a job, an old house, a bossy cat and unpredictable Vermont weather. She was diagnosed with progressive relapsing MS in December 2012. She blogs about all of it at http://steadyshegoes.com.