Vulnerability
If you’ve ever cried in public, perhaps four days ago at your local coffee shop in front of people who you will likely see again in the neighbourhood for the rest of the time that you live here, then you know the vulnerability hangover I have this week. Talking about MS, even in this case with my husband, still gets me emotional especially when I’m feeling like a subpar, fussy, abnormal human because of having it. It’s not a foreign feeling to me, this nagging embarrassment of exposing too much of myself in front of people who are left with only a part of the story, but it’s always been such a consuming feeling. For weeks I find myself recalling and cringing at a moment where I feel like I over shared, replaying the faces and body language of those who heard it, the silence between us from the awkwardness of them not knowing what to say, or my rushed dismissal of what I may have just said as I desperately try to take it back.
The last two years I’ve felt this vulnerability hangover almost every time I’ve talked about MS, whether directly or indirectly. My first real regret in sharing about my diagnosis happened so soon after it when I naively thought it’d be received just like regular news – an “oh, sorry to hear that!” or a “here for you if you need anything!”. Instead I got silence… followed by shifting eyes… followed by them reverting the conversation back to a topic previously talked about, no comment, no acknowledgment. Since then I feel like I’ve adapted to self-editing, revising the truth of my responses to be more surface, palatable.
“How are you?”
Truth: I’m ok, my fatigue has been pretty bad so I’ve been feeling a bit down.
Edit: Good! Can’t complain, how about you?
“Long time no see! What have you been doing the last few years?”
Truth: We moved a couple years ago and I was diagnosed with MS a week later so I went on leave, started treatment and therapy, switched jobs, have been taking it easier ever since while I learn how to manage symptoms.
Edit: We moved a couple years ago and have just been enjoying the city, it’s nice to be on the coast again!
“Are you flying out to so-and-so’s wedding?”
Truth: No, I wish I could but I have treatment.
Edit: No, I sadly don’t have any time off for a trip out there.
“What are your career goals? What do you want to do with your time?”
Truth: To be honest, my diagnosis really shifted my perspective about how I spend my energy and what stressors I expose myself to so I’m in a process of reevaluating and relearning how to live in a way that is healthier for me - what I do isn’t really a priority right now.
Edit: Hm, still figuring it out! What do you do?
It’s not that I’m ashamed of having MS… or, actually, maybe I am – embarrassed to feel pitied, to be seen as weak, to be labeled as “sick”, to disclose on intake forms that I have a “disease”, to be the reason we take an extra break on the hike. I often feel embarrassed in the irony that my whole education was about health and yet here I am with this illness. There are so many layers to why being vulnerable brings on a hangover of regret and shame. There are so many learned behaviours in childhood that explain why I feel the need to process others’ emotions and reactions for them, to self edit in order to spare them from the discomfort I might bring to the conversation. And, to no fault of his, I see how I’ve adopted some of dad’s approaches that he took with his own diagnosis – extreme positivity and downplaying reality.
MS (and I think illness in general) can, in the oddest of ways, be a great illuminator - drawing out from the shadows the parts of yourself that you need to release and grow apart from. I never felt the need or urgency to address my people pleasing nature, to find my confidence and self-worth in nothing but myself, to stop comparing my life to every other person’s, until I was diagnosed. I never knew what it really meant to be vulnerable (and how much strength it actually requires) before MS. The more vulnerability hangovers I experience, the more I appreciate how much more I am at the root of them, not the responses of others. My embarrassment and shame tells me how much more I need to feel confident in myself first, how much more I need to love and accept myself first. It tells me how much I still fear MS and what other people think, even though I try to convince myself otherwise. And that’s going to take some time to dismantle.
So for now, as I work through all that MS surfaces and invites me to work through, the cure for this vulnerability hangover is just this – write it down, get it out, and move forward.