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.

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    18 Comments

  • David Maskalick   Oct 28, 2016 12:50 PM
    Katie,

    Whether you have an inconvenient sidekick, or an inconsiderate sidekick, your sidekick can be annoying when you must deal with a chronic condition for the rest of your life. However, once I accepted that my chronic condition was always going to be part of me, then I was able to make adjustments to deal with its ramifications. I had always persevered, married my high school sweetheart after we had both completed college, obtained my Ph.D. in chemistry, led a research and development group in a company for two years after which I was diagnosed with MS, and continued to lead R&D efforts for another thirteen years before management asked me to take disability. Then I worked hard attempting to start a technology transfer company which though not a success taught me much. Now I have been writing about what I learned. Over the last twelve years I have also been volunteering with my wife. As my life moved on I continued to persevere as best as I could at whatever I have done even as my abilities have declined. I know my wife and close family certainly appreciates that. I realize others may not, but so what. :)

    Dave
  • Mare   Oct 28, 2016 2:34 PM
    I totally related to your ms blog. Good descriptive way of thinking about it. Sometimes it is hard to put feelings into words, so thanks for doing that for me. I feel the same way you do. I guess with any invisible disease I am aware of how at times impossible to share that fact with others because I believe I see in their faces and eyes a look of not really believing what I am saying.
    It makes me just be silent and become more isolated. I can understand that happens all the time when trying to express to others what you are going through. At times, it takes too much mental energy to try to find the right words without sounding like I am making it all up or exaggerating.
    The mental stuff, like Executive Dysfunction, is hard to explain to anyone anyway. I find it hard to understand myself.
    I will check out your other blogs and I am sure I will find them helpful to me.
  • Diana Lain   Oct 28, 2016 3:58 PM
    I have enjoyed reading your blogs over the years. I have recently moved into the last stages of PPMS and require round the clock care (due to my inability to move anything under my neck). It has been really hard finding caregivers and paying them as well. So I started a GoFundMe page in hopes of filling in the financial gaps of obtaining caregivers. So if you have the wherewithal, please share my GoFundMe page, "Diana Lain Caregiving Fund" or use this link: https://www.gofundme.com/39m9c9ss Thanks so much.
  • Lina Botero   Oct 28, 2016 8:11 PM
    I'm new to all this so I'm trying to get used to it & constantly finding ways to help regress it from progressing quickly. I'm still learning how to know my limits. There are many things I used to do that I can't now which gets me frustrated, depressed, & angry. However optimism, faith, being active in a calm way, & eating healthy helps a lot. Sad thing is that the only ones who understand it are very few. Most of my family & friends don't even know or understand the disease. They don't even bother understanding it they just say YOLO, enjoy, why aren't you the same, etc. That's just sad yet my boyfriend of 2 years is the one who's been there & if he wasn't around my MS would have progressed. I lost my job, house, car, & many other things. I focus on the positive because I know there are people struggling with a lot worse & find ways to be positive. To add on to this I also have epileptic seizures & a not so serious benign small fibrome on the right side of my neck which causes a very annoying, air blocking cough. I live my life as best as I can and join groups online of people who are also dealing with this life long disease. It's hard to go from 0 to 100 so quick.
  • Lyn Trindall   Oct 28, 2016 8:18 PM
    I live in Australia. Have had MS for 42 years.
    It does impact on my life, but more so since I fell & broke my ankle badly, 6 years.
    I have been unable to get the rehabilitation needed for other injuries that I sustained at that time, because I have been labelled as a person with MS, that has 'simply become worse'. VERY FRUSTRATING!!!!!!
  • linda   Oct 28, 2016 9:32 PM
    This is such a well written piece and one that I think will benefit many of us.
    Thanking go==for putting words to some very silent feelings !
  • Nancy   Oct 28, 2016 11:02 PM
    Thank you for this, as I find myself in the same position. I live in a rather small town and worked as a nurse for 30 years. Got dx'd in 2013, worked parttime for awhile until I took disability. My vision sucks, tired all the the time,pain... You know. I'm so angry and embarrassed that this is my buddy. If I go out which is rarely I always run into someone I know. Then being medical, they want details. They say you're still pretty as ever! Truth be told I was robbed of my career in critical care, lost house, disability . But I still thank God for the things I have. I don't know when I'll get through this angry stage. I start looking for jobs and think " do I want to put someone's life at risk?" No I don't . So acceptance will come at some point. Thank you and I wish you well.
  • Shawna Loper   Oct 29, 2016 12:20 AM
    I totally understand what you're saying. I struggle with the same issues. Every single day.
  • Caroline   Oct 29, 2016 8:28 AM
    I was diagnosed with MS in August 2015 so I love reading peoples blogs as they help me understand my illness.👍xx
  • Paintster   Oct 30, 2016 11:16 PM
    One must take into consideration, that nobody has the right to put their intentions on you...they simply are going to be of no consequence, their judgments of what they all think that you look like you should be able to perform the tasks at hand, but self-acceptance and learning that every single day we are still alive to look at the sunshine and sense our surroundings should be all the accomplishments any of us really need (in life)~
  • Spencer   Nov 2, 2016 10:46 AM
    What a nice post about disclosure -- and I like how you are talking about exercise, too. I find that what I say when depends on who I'm talking with, so it's definitely complicated. Anyway: your post is appreciated. (spencer @ http://metaspencer.blogspot.com)
  • Lynnetta in CA   Nov 6, 2016 8:44 PM
    Your article really hit home. Thanks for sharing! Helps me feel less alone.
  • jeanine  Nov 15, 2016 8:07 AM
    Great article and so very true. Thanks.
  • KatrinaCo  Nov 15, 2016 9:39 AM
    Thank you for putting this into such a great analogy. I've been so torn about sharing how I truly feel when friends or family ask me how I am. Do I lie and say good? I feel so alone saying that. But there is always that awkward reaction if I say how I'm really feeling. Still struggling with the guilt of worrying family or overloading on friends. And tired of this being my sidekick - can I pick a new one please??
  • Excadet  Nov 15, 2016 10:18 AM
    Could've been me, just a few years ago. Even though I use a walker now, it's still kind of "the elephant in the room," including and especially with my family of origin. Probably unique to our non-communicative style, but no one ever asks me anything about my symptoms or how I feel. This, despite the fact that my mom and two of my sisters have all borne the hateful MS. Great writing, Katie.
  • Maddy   Nov 17, 2016 7:27 AM
    Found this piece interesting. I was also diagnosed in August 2013 and have not disclosed my sidekick to the people I work with. Sidekick is truly limited to very few in my life, family and close friends.
    Walking/balancing is little problematic but get away with old injury that I sustained when I was younger. Then I get "you must try pilates or go see this chiropractor" I just nod and thank the person. Anyway that is life.

    MS will not become me.
  • Susan   Jan 18, 2017 8:04 PM
    I was diagnosed with multiple sclerosis back in 1989. Back then I remember him calling it chronic progressive multiple sclerosis. Nowadays I believe it primary progressive. And true to his diagnosis I have progressively declined. I think after all of these years I have finally figured out the different causes of multiple sclerosis, one of which I recently heard and probably had a lot to do with my decline was sugar. I started looking into the different problems trying to find what could've brought on the MS in my life and once I began understanding how the human body works I was then able to put together what caused my multiple sclerosis. As a matter of fact, when I looked back and examined my life and lifestyle, I realize it would've been more of a miracle had I not gotten MS. I did a lot of research over the many years and found quite a few different causes. Moving forward from here I really feel that now that I understand the link between the stress and MS, the liver thyroid connection, the leaky gut etc. I feel like I am at a point where I will be able to halt the progression. I wish I knew this stuff years ago. Anyway I wrote a book about it explaining the connection to MS (autoimmune diseases also). I have a few copies here if anyone is interested in reading it. I will gladly mail a copy for free. But I only have a few copies. Email me at sn1099@yahoo.com.
    Katie if you would like a copy I will gladly send you one. See if it can offer any help or ideas.
    Anyway my name is Susan Norberg I live on Long Island my email address is above.
  • ldebsnack  Mar 1, 2017 11:54 AM
    I've thought of how to talk to people about my symptoms too. A good way to respond.