The Visible and Invisible Reflections of MS    

Beth Ullah avatar

by Beth Ullah |

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“Mirrors don’t lie. They only show a part of truth.” — Lara Biyuts

I’ve written about how my reality feels jagged compared with actual reality. I wrote, “The woman looking back at me isn’t whom I perceive myself to be.”

I’ve been pondering this recently.

The realism of reality

With COVID-19 waning, the world is opening up again, and we must come to terms with the “new normal” it leaves in its wake. As such, my appointments with my MS team are face-to-face once again.

I saw my consultant last month, and while brainstorming my list of things to tell him, I realized I was omitting symptoms that are now my new normal, particularly the invisible ones.

It’s like looking into a mirror and not seeing a reflection looking back at you; the invisible symptoms tend to come second.

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Some days, it’s not hard to forget the pain, the vibration of spasms all over my body, and the tingling of pins and needles. Yet it occurred to me that I’m asked “What’s changed?” as opposed to “What’s happening right now?” I feel that both of these questions should be asked, as one picks up where the other leaves off.

We know multiple sclerosis (MS) is a hugely fluctuating condition, so therefore “What’s changed?” elicits a different answer each time it’s asked, one which points to indicators of progression. In comparison, “What’s happening right now?” could lead the patient to mention a symptom that occurs less frequently, provided it’s happening there and then. Individually, they don’t form the whole picture. Together, they start to complete the puzzle.

I realized that I do forget to mention those symptoms that are ever-present if solely asked “What’s changed?,” simply because they are always there, every day. For me, these generally consist of neuropathic pain, which umbrellas a whole host of symptoms from actual pain to burning and wetness sensations, to complete numbness in both pressure and sensation.

It’s the numbness that I tend to forget to mention, I think because I adapted long ago. I stopped wearing underwired bras because they now feel like a vice, since I’m constantly numb from my chest down to the soles of my feet. I favor zippers as opposed to buttons because of the reduced sensation in my fingertips.

The problem with forgetting to mention these things, whether it’s in a medical setting or with family, friends, and colleagues, is that the perception others then have of you is vastly different from the reality in which you’re living. This contributes to my feeling disjointed from reality.

The visible versus the invisible

You would think that mobility, being the most visible symptom, would mean that I’m self-aware enough not to fall when I stand and take a step. It’s clear that the four years of living with these horrible symptoms aren’t enough to replace the previous 25 years of walking without thinking about it.

There are times I fall as a result of forgetting that I’m unable to do certain movements anymore. It’s as though my brain regresses to what used to be. All my movements, such as placing my feet and turning to step forward instead of sidestepping, must be conscious now.

Embracing the invisible reflection

As I approach my next appointment with my MS nurse, I’m reminding myself to embrace talking about these invisible symptoms because while they’re my new normal, they are not normal. They’re part of what makes me, me. And the new me is strong, capable, and relentless, despite the things you can’t see hiding behind the curtain of visual reality.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.


kerry jones avatar

kerry jones

Hi Beth, I rarely leave comments but today your column resonates so deeply.I live in UK and diagnosed with RRMS in 2017 after many years of unexplained symptoms especially the invisible ones.Not a day goes by now without some odd bizarre , often painful and sometimes fearful symptom presents .

Today its a first for a sharp stabbing pain /spasm under my ribs almost winding me but I had to smile to myself ( holding tighter onto the trolley) under my breath cursing MS whilst getting a frown from a customer close by. I wanted to explain what was happening but hey invisible symptoms again probably wouldn't be understood . But on the bright side I managed to get the shopping without panicking as to where the loo was .

I sometimes (quite often actually)reflect on the person I used to be and how much I have had to adapt in so many ways because of MS gremlins. I had to retire earlier from work(a job I felt valued in)but on this weird MS journey I have in fact met some like minded weird and wonderful MSers though a MS zoom pilates group which has brought me so much companionship and comradery because "they get it " it gives structure to my week and just having that sense of not feeling so alone and frightened of MS(as i did in the beginning) any more gives back empowerment to my being.

Thank you for such an honest article .


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