Multiple sclerosis symptoms can make decision-making tough. Birgit Bauer shares her top tips for making quick, sensible decisions without too much back-and-forth.
I had to say no. Again.
I didn’t feel good about it, but I knew it was the best decision at that moment. In my head, it was clear. If I were to accept the charming invitation from my husband to go out for dinner and a movie, I would pay the price later.
I live with multiple sclerosis (MS), and because of Uhthoff’s phenomenon, the heat of the late summer’s day meant I was experiencing more fatigue and pain than usual. So when my husband invited me for what anyone would think was a great evening, saying no made me feel even worse.
This is one example of the many daily decisions I make when living with MS.
When MS gets in the way of thought processes
Sometimes, living with a chronic condition means you can't manage everything. You may have to turn down an invitation to dinner or shopping with a girlfriend (the nice stuff). Or it could mean being too ill or exhausted to clean the house (less pleasant but necessary).
In either case, sometimes you have to say no. My MS symptoms mean that I have to do things step-by-step. Like many living with MS, I tend to spread my to-do lists over several days.
Often, I wake up in the mornings and ask myself: “What’s the most important thing I have to do today?”
“Will I be able to get to the grocery store to refill the fridge without any balance problems?”
“Will I be able to do the laundry, or should I rather focus on cleaning the bathroom?”
And then I have to choose my battles. MS requires this level of drawn-out decision-making most days.
MS symptoms give decision-making a new level of complexity
I am not the only one: decision-making is a hot topic in the MS community. We often discuss long-term decisions that will impact our future. New jobs, moving, or family planning are all life-changing decisions, whether the person is sick or healthy. But MS adds an element of unpredictability that clouds the potential outcomes.
When making these decisions, you must weigh every outcome's pros and cons. You may also have to spend longer considering practicalities, such as income, treatment, local MS support programmes etc.
Truthfully, researching and analysing every option can feel like a full-time job.
And - in my experience, at least - other people often want to influence your decision-making process.
For example, I could be thinking about a new treatment option or whether I want to learn a new skill (like taking up journalism). No matter what, those in my social circle frequently want to add their two cents' worth.
They may mean well and try to give advice from an objective standpoint, but do they really understand the reality of your situation? Do they have a holistic view of your circumstances? Are they really able to help and give practical advice?
Tips for making good decisions – with or without MS!
In my years living with chronic illness, I have come to use the following tips when making decisions:
List the pros and cons: Think about your own needs and make a list of all the positives and negatives that might arise from your choice.
Ask for help from a professional: Seek advice from your neurologist or nurse, as they will understand your situation and symptoms the most. Other healthcare professionals, such as psychologists and coaches, may be able to support you through the decision-making process.
Explain your situation to your loved ones: Discuss how you feel to help family and friends better understand your situation.
Do what YOU want to do: You might make a decision with the help of your partner, but you don’t have to involve the whole world. You should do what you want to do and never live your life by others’ expectations.
Trust yourself: If you're sure you need to do something, do it. Sometimes you have to trust your gut and throw yourself in at the deep end. After all, life is there for making mistakes.
Decisions must be made carefully and consciously. And they must be made by ourselves.
As the people who are living with MS, it’s us who know what we can and cannot do.
However you make decisions, it's never easy, and you'll probably have a sleepless night or two. But we have to do it.
If you’re struggling, sometimes a “neutral” person, like a life coach or a therapist, could help you make a valuable decision. I do this if I struggle with decision-making, and it helps.
NPS-IE-NP-00614 October 2022