Ask the expert: Mental health and MS

3 October 2023

Consultant neuropsychologist Jo Johnson worked in the NHS for 20 years before becoming a consultant neuropsychologist for several national neurology charities. She has a specialist interest in multiple sclerosis and has written books for both children and adults who are affected by long-term neurological conditions. One of her books, Shrinking the Smirch (2014), offers a practical approach for managing the physical and mental challenges that long-term health conditions can bring.

We spoke to Jo in 2017 and asked her for answers to some of your questions on MS and mental health. 

Could CBT work for me?

Could cognitive behavioural therapy help with my depression and anxiety? How does it work?

Jo says: Cognitive behavioural therapy (CBT) helps you understand the link between your thoughts and how this impacts your feelings and behaviour. For example, if I see a friend and she walks past me, I might think, “she hates me and is ignoring me”. This might make me remember all the people who have treated me badly. I might think about this for hours and start feeling very sad, angry and lonely. This might make me drink too much or stay in bed. I could, however, respond to this situation differently and instead think, “my friend obviously didn’t see me, maybe she’s stressed; I’ll call her and see if she’s OK”. This reaction won’t make me feel low or do something unhelpful. CBT helps you notice what you think and how it impacts you.

There is an additional group of newer therapies that are being described as the third wave of CBT. One of these is acceptance and commitment therapy (ACT). I find ACT is a useful approach for people with MS. It aims to help people explain and manage negative thoughts and feelings, thus making them psychologically more flexible. I find the model very useful as it clearly states we can’t get rid of difficult thoughts and feelings, but we can manage them better. Acceptance doesn’t mean giving in or that what you’re feeling isn’t difficult; it’s to do with allowing whatever you’re feeling and not struggling to get rid of painful physical or emotional experiences.

The ACT model proposes six key elements that, if worked on, lead to increased psychological flexibility. These are:

  • knowing your values and what’s important to you
  • learning to be in the present moment
  • developing the ability to look at your thoughts, behaviour and actions from a more objective perspective
  • taking distance from negative thoughts and learning not to believe them
  • deciding which actions to take in order to move in the direction of your chosen values
  • coping with emotional discomfort rather than struggling to get rid of difficult emotions in unhelpful ways such as self-harm, distraction or substance misuse

Research is showing that this is a helpful model of therapy for people with MS, but also for their partners. In my opinion, it’s easier to understand and use than traditional CBT models, making it more suitable for people with mild cognitive problems, significant fatigue or people who are going through a relapse.

How do I manage my mood swings?

I’ve been experiencing unpredictable changes in my mood because of my MS and can become angry or irritable unexpectedly. I live with my husband and two young children. What’s the best way to manage these mood changes so they don’t impact on family life?

Jo says: Changes in mood can be due to a range of different psychological, biological, neurological and social issues, usually a combination of all these factors. 

It’s a good idea to get to know your own patterns. If you know that you are likely to struggle in the coming weeks, try to plan ahead. Commit to fewer activities and build in more rest and pleasure. Also make sure those around you are told a difficult time is coming so they can give you more support and encouragement. Make sure you communicate with your family when you are feeling brighter about what helps and hinders when you are low or anxious.  We expect people to read our minds and then feel disappointed when they don’t do what we need. Be specific

For example, say, “When mummy gets low, it is hard to be enthusiastic about anything or even get out of bed. It’s not because I love you any less. It really helps when you come and find me and talk to me or show me what you have been doing”. 

Mood changes may be caused by a number of factors outside of your control but they are often exacerbated by how you think. Notice when you have thoughts like I can’t cope, it will never get better, why me, they don’t care. 

When you feel bad or behave in a way that is not ideal it is easy to respond to yourself in an unkind manner with thoughts of how bad and useless you are as a family member. However this will make you feel worse. Reflect on the kind of friend you would like to have around when your mood is low and see if you can show yourself more compassion for your situation, treat yourself with kindness, get plenty of rest and notice what you say about yourself, don’t refer to yourself as useless, stupid or a hopeless case, recognise you are doing the best you can. If you are able to be kinder to yourself, you will find it easier to be more patient with those around you.

It is tempting to withdraw when you are not feeling great but then you miss out on the things that will make you feel better. Keep up with friends and regular social activities and give those around you permission to support you to go out, exercise and be social when you don’t feel like it.

Am I grieving since my MS diagnosis?

I’m in my early 20s and I’ve just been diagnosed with relapsing remitting MS. I feel like I’m grieving for my lost health. Is this normal?

Jo says: Yes, it’s very normal to experience feelings similar to grief and for a lot of people these go on for some time. It’s important to talk about your feelings.

Some researchers have likened receiving a diagnosis of MS to a bereavement resulting in feelings very similar to the grief response. Some believe grief occurs in stages. Probably the most famous formulation of the stages of grief was developed by Elizabeth Kübler-Ross. She proposed the key stages of grief are shock and denial, anger, bargaining to get rid of the experience and feelings, sadness and depression, and finally acceptance.

The problem with the idea of stages is that human beings are not straightforward; everyone is different with a different personality, past and life. These factors are all important in terms of how you experience a diagnosis of MS. Your reaction will depend on presenting symptoms and what your mind was expecting. Additionally, age of diagnosis, previous mental health conditions, social support and your knowledge about MS will all impact how you react to a diagnosis. If you hold the idea of stages tightly, people can end up feeling abnormal if they don’t experience each of these stages, or if they only experience sadness or if they stay angry for years. Many people feel they don’t ever accept their diagnosis, as to them it means giving in.

Everyone is an individual and whatever you feel is like many others. The best approach is self-compassion. Try and understand yourself as a friend, be kind to yourself whatever you are feeling and don’t feel pressured to react in a certain way.

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