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Living with progressive MS: Living our values

Jo Johnson

Neuropsychologist and author Jo Johnson talks about the power of finding and living the values that matter to us. And how this can help if you’re living with progressive MS.

Multiple sclerosis creates challenges that many people can’t possibly understand. With every progression – new or changing symptoms – there is further loss. And each loss can be painful. It’s entirely normal to experience a range of negative feelings and to want those feelings to go away.

Getting out of the swamp

When we’re distressed, so much is out of our control. So it’s understandably easy to get pulled into the swamp of difficult thoughts and feelings. We can lose awareness of what matters to us. When we get stuck in the swamp, life can feel meaningless and we’re vulnerable to behaving unwisely. We can make life even worse for ourselves and those we love.

But’s there’s a surprisingly accessible way out of the swamp. It’s our values. Values are psychological steroids during times of hurt.

Research shows people feel better when they’re aware of their values and use them to direct their moment by moment behaviour. They experience life as more meaningful, are healthier and enjoy stronger relationships.

What do we mean by values?

Values are the personal qualities you’d like to show even when no one is looking, like being:

  • loving
  • caring
  • grateful
  • a loyal friend
  • self caring
  • open
  • kind
  • honest

Values are how you want to behave. They are not about what you should do or have to do.

Connecting to our values

We can connect with our values and use them in daily life whatever our situation or abilities. Here are a few easy ways to discover your values.

  1. Think of a time recently when you experienced joy. What does this joyful moment show you care about? Tell someone about this.
  2. What would you like people to truthfully say about your character?
  3. What personal qualities do you admire in a good friend?

You can search the Internet for lists of common values to get more ideas. Write a list of the values you most want to show in your daily actions and keep it close.

Living your values

Like medication, having values but not using them has little benefit. Here are a few ways you can put your values into action. Each one might be small, but the overall impact can make a difference.

  • Choose one value and think about the times in the last month you’ve shown that value in action. For example, patience: I didn’t make a loud sigh when the care agency put me on hold. Then choose three really achievable actions you could do in the next month to show that value in other situations.
  • Each day choose a value. For example, gratitude. Choose a small action and do it. Like, I’ll list in my head the things I’m grateful for every time I see or hear the birds.
  • Every day ask yourself what’s the smallest action I can take to move towards one of my values? For example, not criticising myself for small things will take me towards self-compassion.
  • When you have a challenge. For example, if you need to have a difficult conversation with a friend. Before the challenge, decide what values you would like to show. And ask yourself - what would that look like if it was on camera?

Notice when you live your values

Notice when you’re acting out your values. When you’re being a kind partner or a patient mum. When you show courage in the face of loss. Say to yourself - here’s me using kindness to guide my behaviour. This is me being brave. Don’t let these moments slip by without noticing them.

Most of all, remember we hurt when we care and that’s why there’s emotional pain. Offer yourself the same compassion you’d offer to a friend in your position.