Barbara Stensland shares her tips on how to rebuild your life after a devastating MS diagnosis.
So you have just been diagnosed with multiple sclerosis. Let’s assume that just as it was for me, this diagnosis is a massive implosion in your once known and formerly secure life.
Perhaps your job is in jeopardy, maybe your partner doesn’t understand and in all probability, the kids are scared.
Things suddenly look very different
In my life three major shifts happened:
1. What I thought I knew, I now didn’t as I had been dismissed from a job I loved.
2. What I thought I believed, I simply couldn’t anymore as I had believed my partner and I had a great relationship, and a future.
3. How I thought my life would progress, it just wouldn’t because I knew MS was now the spectre at my and my son's feast. And there was nothing I could do about it.
I had a couple of choices:
1. Have a spectacular Pity-Party-For-One for a couple of years.
2. Pick myself up and make something out of the debris of my old life.
Personally, I highly recommend the Pity Party. But if I were you, I’d perhaps not keep it up for quite so long as I did. I was a mess, physically and emotionally. If I could do that old-fashioned thing of gnashing my teeth and rending my clothes, I probably would have.
Luckily for me, there was light (eventually) at the end of the tunnel and it wasn’t the glare of an oncoming train. My friends pulled me out of my abyss, chastising and comforting me simultaneously.
A new perspective
As I surveyed the wreckage of my life with a fresh perspective, I felt damaged yet free. Everything I thought I knew had gone – job, partner, future career path.
My son was still here, and of course I was right by his side throughout this adjustment phase. To be fair, most of the adjustment was hidden until the Witching Hour, otherwise known as bed time.
Because as parents, we’re past-masters at pretending all is well. Instead of making home-made cakes for the school’s charity drive, I’d buy some and then cunningly bash them up a little before wrapping in wax paper.
Or I’d have three of my son’s school friends over for tea at the same time, in the hope he would have three separate return invites in which time I could sleep.
I was learning to adapt to the pesky MS symptoms. I had a new job, I won my unfair work tribunal and I remained happily single. I started to wonder what I could do now the dust had settled…
So if the old me was the first phase of my life, I had to roll up my sleeves and start building the new one. And that’s when I realised that I could extract something positive from MS. I know, it’s almost too strange to fathom. MS, positive?
Well, yes, if you approach it with an open mind. Here’s a mini-guide, based on my own experiences:
How to extract something positive from your diagnosis, in easy steps:
1. Survey the wreckage it has made of your life. Cry if you want to (I did, a lot).
2. Write a list of everything (and I mean everything) MS has done to ruin your life. Be brutally honest.
3. Cross out parts of that list that were perhaps dead on their feet anyway. How was your job satisfaction, your work/life balance, your relationship really? Again, be honest.
4. On a separate list, write down what’s left.
5. You now have two lists – List 1: What MS Did, and List 2: What MS Left Behind.
6. Now this step is the biggie: Fill in the blanks with a wish list. What can you do to fill your new life with positive things? Can you spend more time with your friends and family? Do you want to pursue a new hobby/passion? Is it time to cultivate a new attitude? Don’t hold back, you’re creating your future.
Not all the things you write down will happen, but write enough of them down and some will. For example, two of the things on my second list are: ‘I will learn the piano or saxophone’ and ‘I will learn to cook rice’.
I’ve carried these over on my list for six years now and probably have to accept they just won’t happen.
But other things have – in their place.
I’m not going to pretend it’s easy, it’s not. It will be one of the hardest things you’ve ever had to do, after hearing your diagnosis. There’s a brilliant quote by the German physicist Georg C. Lichtenbert;
I cannot say whether things will get better if we change; what I can say is they must change if they are to get better. -Georg C. Lichtenberg.
This really stuck with me through my darkest times. I knew that the only way to rise again was to change. Life wasn’t the same, and I certainly wasn’t, but I wanted to be the creator of this change.
As with any monumental task, bring in resources – call on friends and family to help you out with your lists. Their perspective will be invaluable and they might remind you of long-forgotten goals you once had.
They can range from the simple, such as me learning to cook rice properly, or the more challenging, like maybe going back into education or embarking on a radical career change.
It doesn’t matter how big or small, by changing one tiny thing for the better, you can create an evolving process. You will now be in charge of MS.
In a way it’s about harnessing it, learning to adapt to it and finding out new and innovative ways to live with it.
NPS-IE-NP-00088 October 2022