Have you ever tried explaining your MS symptoms to people who don’t have MS? Giving honest accounts of my symptoms can be a bit like advertising a circus of bizarre ailments…
It’s something I censor, protect, turn into more palatable metaphors, and indeed hide. Even from myself. But I think honesty, and honest language, is important when it comes to talking about MS symptoms.
As I literally stumble along the ever-shifting landscape of my symptoms, I continually have to adjust and re-adjust my self-perception. The last thing I need is to hide the symptoms and feel shame about them. But sometimes I don’t even notice I’m doing it.
Why am I so embarrassed?
What I’m looking for now is a change in my own attitude via a bit of good old self-confrontation - even if it’s embarrassing, even if it’s not very fun, even if I’m actually terrified.
Maybe I’m hopeful that sharing will help me face the symptoms I hate, fear and despair of in a healthier way. And this feels like safe space where we can all be there for each other.
I’m starting to wonder why I’m so embarrassed about these symptoms that are out of my control. And, of course, I’m hoping it’ll help some of you out there to do the same.
So without further ado, here’s a list of the symptoms I hide.
Well let’s just jump on in, shall we? Bladder problems are super common, and super embarrassing.
Why can bladder weakness be so shame-inducing? Well, it’s such a blatant symbol of losing control, isn’t it? I’ll secretly pull out the panty liners before leaving the house and I’ll feel ill-at-ease if I can’t pee right before leaving. I’ve struggled alone with this rather intimate problem for as long as I’ve had MS.
Fatigue is something that I’m sure many of us hide. It can be associated with lethargy, laziness, weak-mindedness, and somehow even selfishness. These stereotypes are reinforced in so many different spheres of modern life that it’s hard to name them all - the workplace, social media, the family…
The world wants to see what you’ve been doing. It doesn’t leave much room for those of us that need to put rest before many of the usual measures of a ‘life lived to its fullest’.
Although I’d love to say that I’m beyond these external measurements of success, I’m simply not.
I lie about how much housework I’m able to accomplish, I explain away my regular need for 3 hour naps as ‘catching up on sleep’. I even feel guilty when I’m alone and need to rest.
Forgetting things might be the mental equivalent of bladder weakness – it’s a very poignant example of losing control. And with losing control can come shame.
Not only can MS affect our bodies, but it can steal less visible and somehow more personal aspects of ourselves. And having to explain forgetfulness when most of the time my symptoms are quite physical can be exhausting in itself.
No one wants to admit if their MS is getting worse, even if it’s gradual.
Seeing the sadness reflected in the eyes of my loved ones when I need to speak about new symptoms can be crushing. So why wouldn't I want to save them the heartache of hearing I’m getting sicker? It saves me too - from seeing the sadness that my condition, through no fault of my own, causes others.
And it can feel like a personal failure. When healthier people think about ‘progression’, they think about the journey to recovery, of getting better, eventually. The entire discourse surrounding disease is cloaked in language that supports this.
We battle cancer, we fight cold and flu, in the hope and belief that at the end of it, we will come out victorious, we will come out the winner. When this doesn’t happen, it makes sense that we feel like we’ve lost.
The biggest reason I hide
Perhaps the biggest reason I hide my symptoms is because they make me feel like I’m fundamentally changing – into someone I don’t know how to recognise, let alone choose to be.
So do I feel better for sharing? Not really, but let me explain. I don’t want to force a smile through my pain, and the fact of the matter is, I shouldn’t have to.
I shouldn’t be embarrassed, and MS shouldn’t make me feel guilty about being scared. These symptoms remind me I didn’t choose this battle and it will continue to be hard.
But this battle is mine. I own it. And it’s mine to do with whatever I choose. Maybe today I choose to not be embarrassed and apologetic. Maybe today I choose to tell it how it is, bladder weakness and all.