7 notulen, 10 seconden
Receiving a life-changing diagnosis of Multiple Sclerosis can understandably knock your confidence sideways. And yet ironically, it is now, more than ever before, that you will need this in abundance.
There is a whole new medical system with all it’s unfamiliar jargon to contend with. You may have to make changes within your work or study place. Your family dynamics may change. And this is all before coping with a multitude of unfamiliar and often frightening symptoms.
So how can we build confidence within ourselves to demand more and get more in this new MS world? What are your unique Patient Focused Priorities (PFPs)? Here are a few of my tips, borne of seven years of trial and error (lots of them!) which has led me to now living the life I want to live.
First things first – your head is probably a whirlwind of emotions, practicalities and perhaps fears. Get writing! Get it all out. Grab a notebook and section it up;
Write down every area of your life MS has impacted, work, family, etc. Then jot down how. These are your problems to be solved. Even this simple act will incentivise you.
Next section is to start a symptom and appointment log; from the very beginning, with dates (very important!) and write down every single appointment, every single new or flaring up symptom. Keep it regularly updated – this will come in invaluable in MS appointments as you will have all the information at your fingertips and you’ll also buy some extra time to discuss more points in depth. This will give you a huge amount of confidence and control in appointments.
Finally, write a wish list! Your life has changed immeasurably, for now. But how do you wish to see your future unfold? Go wild – write down anything and everything you can think of. This will help keep your confidence levels raised as so often we concentrate on what we have lost, not what we can gain. Mind you, some of my ‘lost list’ actually turned out to be a positive in some ways – the deadbeat partner who scarpered, the discriminatory workplace who sacked me.
2. Accept when you need support
I know, it’s a tough one. If you’re anything like me, this can be really hard to factor into your life. But consider your confidence levels on your own – they might be really high, but what if you add on your partner, your best friend, a supportive colleague? It’s a cliché, but we really are stronger together.
Not only that, they might bring up points you hadn’t thought of, as they will be seeing your life from a different angle. So share your lists with them – they may remind you of a symptom you dismissed, or a goal you’ve always talked about.
3. Do something that scares you
Weird – isn’t MS one of the scariest things to face? But I sometimes think, ‘What’s the worst that can happen, when it’s already happened?’
My biggest fear is public speaking. For someone as opinionated as me, this is a conundrum. I think it’s down to having to do a speech in an English Literature class at school, aged 14, when I’d just moved from Scotland to Wales and I was worried about no one understanding my accent.
I’m still terrified of public speaking, but I will do it. I started small, built up bit by bit and now speak (often shakily) at large conferences. It scares me silly and I can’t sleep for weeks beforehand but the confidence boost is immense, to know that I am sharing my story with others.
4. Get angry
Anger is a wonderful motivator when channelled positively. If you felt your neurologist wasn’t listening to you, write down in your notepad how and why not. Again, let it all out and work out how to change it next time. Don’t ever settle for second best.
At my first ever appointment with my neurologist, I felt dismissed out of hand and I’m not ashamed to say I cried afterwards. I determined then and there that I would not be treated this way and shared this with others. They in turn gave me the confidence not to accept this at my next appointment, when I stood my ground. I worried I would be labelled as a trouble-maker, but at the end of the day, it was my health at stake.
5. Realise your unique value and individuality
MS is not one-size-fits-all and neither are you. Your Patient Focused Priorities – everything that is dear and important to you – are of utmost importance. Whatever your goals/aims/wishes when living with MS, articulate them. Get them out there, make them your focal point, which will then allow you to start living the life you want, despite MS.
Your MS experience
If this article has inspired you to build confidence in your MS journey, please be sure to share with us via social media using the hashtag #TWvsMS
ZINC code: SAGLB.MS.19.01.0042q
Date of approval: June 2019
Ontdek met het kaartspel ‘doen, durven of de waarheid’ zelf welke dingen je in je leven met MS anders kunt doen. Doen, durven of de waarheid.