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25 August 2020

Finding certainty in uncertainty

"MS is an uncertain condition in so many ways and the process of accepting this as part of your prognosis can be a long one". Hannah, who is currently working on her PhD on the topic of psychological support in MS, reminds us to focus on the present and not the uncertainties of the future.

A diagnosis of MS comes with uncertainty. With this uncertainty come many questions.

When will I experience a symptom again?

When will I next experience a relapse or significant progression?

What will my health be like a year from now? Or even a month or week from now?

Will I be capable of starting or maintaining family life and contribute as I want to?

Will I be able to continue in my career?

These are just a small handful of questions that you have probably asked at some point since your diagnosis. These are questions that can’t be answered in a simple way either, because the variation is so broad. There are many possible answers to each question and these are answers are those that you simply cannot predict and vary widely from person to person.

You could turn to the statistics and as a researcher, I am certainly stickler for taking this approach and have been from day one. This might give you an idea of how often the average person with MS will experience a relapse, or the percentage of people with MS that will have to quit work, and at what age that happens on average. It will even give you an idea of the chances you’ll end up in a wheelchair (I checked that) and the average life expectancy of someone with MS compared to someone without (yes, I’ve searched for this too). This might add a little certainty and predictability to the constant uncertainty that you live in, but the truth is, everyone is different and these searches may even do more harm than good as you may find yourself resigning to a fate that could never happen.

I’ve come to understand my own MS quite well now and have been able to notice some patterns that add an element of predictability to my MS… Until a new symptom with an unexpected trigger arises and throws all my expectations awry.

I see this recent revelation as a reflection of the evolving nature of my own MS, that much like things vary for person to person with MS, they can also vary within the person too. What is a symptom and trigger for me now, won’t necessarily be a trigger and symptom for me next year.

Ultimately, the message here is that MS is an uncertain condition in so many ways and the process of accepting this as part of your prognosis can be a long one. Uncertainty is known to lead to feelings of helplessness and depression and it can be all too easy to just give up and surrender to such feelings. However, I want to open your eyes to something right in front of them, something so easy to overlook, that amidst all this uncertainty, there is something that is certain for us all.

Focusing on the present

RIGHT NOW! The moment you are in right now is certain as you are living and breathing it.

Instead of focusing on what the future may or may not bring and ruminating over the worst case scenario, focus on what is happening right now and embrace the present. Instead of giving so much attention to the uncertainties of what lays ahead for you, instead divert your attention to the little bit of certainty that you do have right now.

Perhaps you are worried that your MS will get worse in the future and this takes up much of your daily thinking, instead focus on how you are doing right now and be grateful for where you are now without worrying about where things may be 10 years down the line.

Rather than ruminating over potential future outcomes, focus on the present moment and appreciate your surroundings, MS or not. Give attention to every one of your senses one by one and appreciate the beauty that comes with each.

Your MS comes with much uncertainty, but your reaction to it does not have to. Embracing right now is about as certain as it comes, so live in it, reflect, embrace it and appreciate it for we are not guaranteed tomorrow.

You can take part in Hannah’s survey which she is currently running as part of her PhD research on the topic of psychological support in MS. Click here to find the survey.