Why we use such combative language when we talk about living with and managing multiple sclerosis (MS)?
Barbara Stensland shares how she made peace with her diagnosis.
I am not a fighter.
I don’t fight MS, nor do I ‘battle’ it, and I’m certainly not brave. Being brave means having an active choice in the matter and well, I didn’t choose MS.
Six years after my diagnosis, I have learned to live with MS, accepting that it may always be here (although always hoping for a cure), but certainly not letting it define me. So no, I’m not losing the fight or winning the battle –I’m just me, trying to live with MS.
Sometimes the words we use around illness are in some ways more terrifying than the illness itself. Think back to when you were first diagnosed – I’m sure you’ll have heard at least one of the following:
- You can win this.
- You can beat this.
- You will overcome this.
- You’ll fight this.
- Don’t give up the battle.
When did illness become so combative? When I was diagnosed all I wanted to do was hunker down, be surrounded by a loving, supportive group of friends and family and perhaps overload on the carbs. I mean, not only do you have to deal with a life-changing diagnosis, you’re also urged to fight, when you’re at your absolute weakest.
And the negative flip-side of this? A relapse could be seen as a failure because you just didn’t fight hard enough.
That’s a lot of pressure to put on an ill person. So where does this come from? Fear?
Why do we do this?
I think it’s two-fold; first, people think they are ‘supposed’ to be healthy. So when our bodies malfunction, we all think if we could just fight against it hard enough, we will win and restore the ‘natural order’. Second, our friends and families are often at a loss as to how to approach this illness. So they resort to rallying tactics – sending us fighting slogans on cards and emails, encouraging us, sending us links to this, that and the other, and assuring us that everything will be OK.
Sometimes it feels as if everyone knows someone who recovered from MS.
And that puts a lot more weight on our already-burdened shoulders, which can lead us to undermine our very real symptoms, feigning wellness and pushing ourselves too far.
I know I did it. I hate asking for help so I slapped a smile on my face and I pushed myself over and over at work, at home, with my friends and family. What they didn’t see was me, exhausted, in pain, and pretending everything was just fine. After all, I had a battle on my hands.
Is there a better approach?
Let’s dismiss this fighting nonsense. Information is the key – educating family and friends, and most importantly, ourselves. Allow yourselves time to grieve when you receive your diagnosis. I held a spectacular pity-party-for-one for two whole years, and I tell you what, it was the best thing I could have done.
I cried buckets. I mourned –which in hindsight was incredibly important. There was no fight in me. I just wanted to sort out my new life. In a way, I was building my life again from the ground up.
The beauty of that is that I could choose what to include in this rebuilding. I got rid of the negative friends, the crazy day-to-day stresses. Rebuilding gave me the chance to reflect, to think about what I wanted my life to be filled with, and it didn’t include fighting.
Instead, I focused on beautiful, simple things. I drilled right down inside myself and asked just what made me happy. I bundled it all up and scattered these things across my new way of living.
So what if there were dust-bunnies in every corner of my house? I filled the walls with artwork I liked looking at. If I couldn’t get out to meet friends, they came to me and didn’t mind seeing me bundled up in a duvet on my sofa. In fact, I invested heavily in a duck-feather duvet as a treat. Why not?
These days, my life is good. It might have taken a while, but good things always do. Sure, I have my ups and downs, but if there’s a problem, I try to find ways to fix it, sometimes alone, more often with friends. I’ve discovered there’s pretty much a solution to everything… Just about.
So my message is this: You don’t have to fight. Look after yourself. Focus on what is important and the rest will follow.
NPS-IE-NP-00066 September 2020