What’s It Like To Have MS?

“What’s it like to have MS?”

I’m sure many of my fellow PwMS (people with MS) would readily be able to answer that innocuous question. They would be able to talk about the impact that their symptoms have on their day-to-day life, the changes that have taken place since their diagnosis, how a life with MS differs from a life without. A life before.

But I don’t know how to answer that question, and believe me I have tried. MS is so inextricably linked to who I am. It is not a separate entity that I can pull apart from the “rest of me” in order to articulate the impact that it has. It has been embedded; its roots penetrate the very fibres of my being that make up my adult identity. I have changed since my diagnosis in much the same way everyone changes as they grow from teen, through early-twenties, to late-twenties, whether or not MS is in the picture. But it was in my picture, and as I grew, MS was entwined along the way.

I can’t tell you what impact MS has had on my life, because I don’t know. I don’t know which decisions I might have made differently without it, I don’t know which behaviours I may or may not have indulged in. I don’t know what it’s like not to take fatigue, pain or DMTs into consideration. MS has been influencing my life in very physical, very tangible ways, since I sat my high school exams – even if I didn’t realise just how much influence it was having at the time. I can’t imagine what it must be like to have a body with full, “normal” sensation – in fact, it intrigues me when I see someone touch someone else on bare skin, and that person doesn’t flinch or pull away. I always want to ask, “so what does that feel like? Describe to me how it feels to be touched…”

I don’t know if I would be the same person that I am now, had I not been diagnosed when I was. I would imagine probably not. I don’t know how much of my adult character comes from living with, managing, and dealing with MS; both physically and mentally. Maybe I would have more sympathy for the plight that comes with a common cold, or less awareness of the issues that now flood me with a burning passion. Maybe I would have less perspective on the important things in life, and care more about designer labels, flawless skin and getting my hair cut professionally. Maybe I wouldn’t have gone through a period of depression in my early twenties, but then I might never have received the impetus to make life-altering decisions that are leading me towards a sustained, contented happiness. Maybe my strength, my resilience, and my problem-solving skills, would pale in comparison to what they are now. Perhaps I’d have graduated university; an alternate path which may have led me away from meeting the man I now share my life with.

I have never known “adult Evie” as someone other than a person for whom MS makes up a part of their life, a part of their identity. And I quite like the person that I am, that I have become, that I am becoming. Would I risk all that I have now for a life without MS? Honestly? The jury’s still out on that one. It’s definitely not the resounding “yes” that you might expect.

My body; my vibrating, aching, MS-ridden body, is as normal for me as your body is normal for you. Think about that. And when people talk about how awful it must be, how horrendous, how sorry they are – I nod, I smile politely, I mentally eye-roll as I contemplate how *they* would feel if I told them how awful their existence must be, but I can’t quite agree. For me, MS is neither inherently good nor inherently bad. Much like life.

But, as with everything Multiple Sclerosis gets its hands on, there are curve-balls. There are addendums, annotations and asterisks galore. Nothing is ever simply black and white.

Key change: MS is progressive.

I feel like I could be approaching the tipping point; right now I can categorically and undoubtedly say that MS has given me more than it has ever taken. It has formed more of who I am than it has destroyed. But that delicate balance is starting to shift.

Its roots continue to grow within; harder, faster, tighter, deeper. They are penetrating new areas of my life, of my identity, and there’s very little I can do to keep them at bay. I’m being reacquainted with emotions that I last felt at 17 – fear, dread, panic. I once wrote that living with MS is like waking up from a vivid nightmare, over and over and over again. The kind of nightmare that you can’t escape from, that fills you with terror, and when you wake up that fear lingers for a moment but you can’t quite remember what you’re afraid of. I wrote that it haunts you; all of your thoughts, all of your dreams, all of your ambitions and your plans, but that you can’t quite put your finger on the problem, on what’s causing that vague heaviness in the pit of your stomach. It’s just something that lingers in the shadows of life. Waiting.

I imagine I wasn’t in a great mood when I wrote that.

MS will always have a starring role in the story of my life. It has made me who I am. While I will always hope for a cure in my lifetime, and would batter down the doors if one became available tomorrow, I can’t deny that there is light to be found in the darkness. There is a fondness for the lessons it has brought me – I have been privileged to learn in my twenties what most may come to realise, or appreciate, much later in life, or not at all. All life is made up of light and shade, hope and loss, grief and joy; even a life with MS. Especially a life with MS. I could never categorically say that MS has had a solely negative impact on my life – it is far more nuanced than that.

So for me, being asked, “what’s it like to have MS?” is akin to being asked, “what’s it like to be alive?”

Ummm…dunno mate, it just is.

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