Friday, June 21, 2013

Dealing with my MS, Shame Part 1.

I’ve done a lot of traveling lately and have become UBER aware of what flying and exploring is like with disability. Yet I remain “in the closet” with my MS when faced with options to make travel easier, less stressful, less tolling. I had three opportunities recently to ask for help, to ask for that pre-boarding card before jetting off to Boise, Las Vegas and Phoenix, and I denied myself each time.
Contemplating why
Now that I’m home from these journeys, I’ve begun contemplating the whys. My first instinct is always an attempt to answer the simple question, “have you come to terms with your MS diagnosis, Christie?” I’d like to think the answer is a resounding “YES, of course! All of my friends, family and loved ones know I live with MS, I’ve got nothing to hide. “

So, what’s the problem?

Well, I’m not sure. But, lots of emotions come up when I’m faced with the decision to ask for help or not. As I think about it, the four questions below are typical for me when I sit in the boarding area near the gate. I’ve also made an attempt to identify the emotions that come up for me.

What’s the problem? Why don’t I ask for help?
  1. If I ask for a pre-boarding pass, am I taking away the opportunity from someone else? From someone who needs it more? Emotion = Guilt.
  2. If I join the others with pass in hand, will all the other passengers stare and glare? And, why do I care so much about what complete strangers think?  Emotion = feeling labeled, misunderstood.
  3. Am I really having such a bad day that I need to pre-board? Emotion = Denial.
  4. If I take the pre-boarding card, what if someone who doesn’t know I live with MS sees me? That someone being a work colleague. Emotion = Fear.

Or, gasp! Is this really all about shame?

Shame is a tough one, isn’t it? And, when it applies to having a chronic illness it can be difficult to overcome. I grew up in an environment where being “ill” was a sign of weakness. I saw examples of my loved ones, teachers, and others who, when they were “ill”, toughened it out, never slowing down. Did I grow up in a culture that despised the “ill”? Yeah, I think so. It was how it was growing up in the 70’s and 80’s, at least for me. When someone in our circle became “ill” the message came in a whisper, to hide the reality that someone was just diagnosed with something quite serious.

So now what?

Dealing with shame is a monster for me as it’s not limited to just my MS diagnosis. As a starting point, though, I’ve begun reading I Thought It Was Just Me (But It Isn’t) by Brene Brown. What an incredible book! I’m not even halfway through it and I’ve gotten so much out of it. First, I learned that shame doesn’t go away (UNFAIR!), just like MS, and yet that makes sense to me as I also read that it’s about how we identify and deal with the shame that makes the biggest impact.

Dr. Brown defines shame as “…the intensely painful feeling or experience of believing we are flawed and therefore unworthy of acceptance and belonging.” This certainly gives me something to noodle over, for sure. Hence, once I finish the book, I will post an update dubbed “Dealing with my MS, Shame Part 2.” Until then.

In the meanwhile, I’d love to hear from you. Does shame come up for you, in your life with MS? And, if so, how do you deal with it?

Take care,

P.S. to read more about traveling with MS, check out my contribution on My journey of pre-boarding with MS=, or not


  1. u know, i used to be like that. not ask for help, when people ask if i need help - say no, feel somewhat self conscious when walking around with my cane or using my scooter. but eventually i realized that i was only hurting myself.

    now, when people ask, i say sure (for the most part) and sometimes i even ask for help myself, i don't care what people think (this is what it is, it's not something i asked for) and i absolutely LOVE boarding a flight before everybody else - gives me a chance to people watch when others are boarding and i can get comfortable in my seat without feeling pressured!

    1. Hey Stax. Thanks so much for stopping by. Your comments really, really help as I navigate this chapter of my life with MS. Hope you're well. Best, Christie

  2. Nope, shame is not an issue for me. When I need an early boarding pass, I get one, When I need to park in the disability parking spot, I do...etc. Some days I am "ok", and I can function pretty "normally", so on those days I don't use the special services provided.

    1. Hey Karen, when I read your words I know that this is the approach I need to take. It's advice I would give others, 'ya know? Thanks for your comments as it really, really helps! Hope you're well. Best, Christie

  3. Such thought-provoking question! Guilt?...fear?...feeling misunderstood?...denial? How about all of them? For me, they all fall under the category of embarrassment. For as long as I can remember, I've preferred to fly under the radar. MS doesn't allow me to be inconspicuous. Walking different, using mobility equipment, needing special privileges (like early boarding) - all of it results in unwanted attention. My head tells me the embarrassment is undeserved, but my spirit still feels the pain of unwanted attention. If I can put enough words to my feelings, I may blog about it myself.

    1. Thanks so much for stopping by, great to hear from you. I'd love to see what you write about this topic as it is a challenging one, for many of us. Hope you're feeling okay. Best, Christie

  4. I am unfortunately past the point of choice, a lot of things are done out of necessity now.


    1. Thanks for your note. I just stopped by your blog, love it! If you ever find that you have advice on this notion of asking for help or not, drop us a line. We'd love to hear from you. Best, Christie

  5. Great post. I go through 1-3 every time I use my handicapped parking tag. I have four young boys and sometimes, even when my leg is a little numb/tingly/weak, it is hard to get them all across a parking lot! I sometimes look around to see if other people are looking at me wondering why this apparently healthy woman in her early 30's is parking in a handicapped spot. A blessing for me is that my husband doesn't tend to care what others think. :) He always says, "If you're going to have a chronic debilitating disease you might as well park close." Love that man.

    1. Hey Katie. Thx for stopping by. Sounds like your husband is a great man! It can be so difficult and it's wonderful to have a strong support system to remind us that it's okay to ask for help (I'm still working on this one). Hope you're well. Best, Christie


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