Living with the uncertainty of MS can be a traumatic experience. Many patients describe how the uncertainty of not knowing when or how symptoms may manifest makes day to day life incredibly stressful. For example, patients with relapsing remitting MS describe how making plans and relying on caregivers to be around to help at short notice can incur feelings of worry and guilt (Ratajska, A. et al, 2020). 

The psychological expression of these emotions can often emerge as anxiety. It is nothing to be ashamed of and it is important to remember, that even people who are not suffering from a chronic disease struggle from ‘not knowing’ what the future holds. So anxiety and concern for future disability can be entirely normal (Khatibi, A. et al, 2020).  

WHAT IS ANXIETY? 

Anxiety is nature's fight or flight response that triggers our immune system and is useful when we need to be alert to danger in our environment. However, if this state is prolonged it can have a significant impact on the functioning of other bodily systems such as breathing regulation, heart rate and bladder and bowel control (Definition of MS, 2022). Besides the immense contribution to physical symptoms, prolonged anxiety can also have serious implications for mental functioning. Many patients experience 'cognitive distortions'; these are otherwise known as ‘thinking errors’. 

WHAT IS COGNITIVE DISTORTION? 

This is an exaggerated and irrational thought pattern that can be brought about by anxiety, and depression. Thoughts may tend to be negative or maladaptive to coping with day-to-day life. These thoughts can result in destructive behaviours such as substance abuse or sabotaging close relationships. By mistaking negative thoughts as facts, it can impact the way you see yourself and others and can have an effect on social relationships and your overall quality of life (Mikula, P. et al. 2021).  

Here is a list of examples that can help you to identify some of the cognitive distortions that may arise, and some options for treatment to help you overcome them (Delgadillo, J. et al, 2020). 

ALL OR NOTHING THINKING

This is also known as polarised thinking. This means that you will view things as all good, or all bad. You may experience a particularly bad day and assume that you may never move beyond it. 

OVERGENERALIZATION

You may make an assumption that a friend ‘will never contact you again’ because you had to decline a social invitation. Or, after a relapse that involves a loss of mobility, you may easily think that ‘you will never walk again’. Whilst as an MS patient you have realistic fears concerning mobility and the issues that arise because of it. It is important to keep a balanced view and remind yourself that these issues arise ‘sometimes’, and that the next few days may be different.  

MENTAL FILTER

This is when you may focus on one negative thing that has happened. For example, your caregiver may have said in the heat of the moment that they are feeling frustrated. Instead of focusing on all the ways in which your caregiver is more than happy to help you, it can be easy to get caught up on that one statement and make assumptions about how they feel. You may think ' ‘they don't want to look after me” or some other negative confirmation about your relationship. This can contribute to feelings of low worth and an unrealistic appraisal of the situation, leading to the potential to impact on social relationships (NHS England, 2022). 

IGNORING THE POSITIVES

This is when you may ignore all of the positive aspects of a situation and reject any validation of a good outcome. For instance, instead of feeling proud of an achievement such as managing to stand up unaided, you may assume this has nothing to do with your personal achievement and effort, and ignore your own strengths and skills. 

JUMPING TO CONCLUSIONS

When you are feeling anxious and depressed, it may be that you assume negative thoughts within another person. You believe someone will react badly to a situation, or that they are thinking things that they aren't. 

MAGNIFICATION

This is where you may over emphasise your failings, and forget to celebrate your achievements. If you have a bad experience you cement this as ‘evidence’ that things will never go your way, or that ‘nothing good ever happens’ 

EMOTIONAL REASONING 

By putting emphasis on your emotions when they are negative, you will make judgments about your whole day or week based on this. This can be particularly concerning if you are experiencing feelings of guilt towards a loved one or caregiver. You may assume by your emotional reasoning that your guilt is justified because you are ‘a terrible person’ 

CATASTROPHIZING

You may make a judgement about yourself such as ‘I am a failure’ or ‘I will always be a burden to others.

HOW TO GET HELP & SUPPORT

It is important to recognize when you are thinking about yourself in such a negative way that it may not reflect the reality of your situation. By paying attention to these thought patterns, you may begin to notice when you are doing it. 

Self compassion is a key component of surviving the psychological impact of living with MS, and it may be necessary to speak to loved ones, or people around you and ask questions, so that you are not making unnecessary assumptions that will affect your wellbeing or interpersonal relationships (Delgadillo, J. et al, 2020). 

PROFESSIONAL HELP 

Getting help from professionals can help with reducing negative thought patterns or behaviours that emerge from the anxiety of living with MS (Gromisch, E.S. et al, 2020).  

Methods for coping may include allocating a specific hour each day for worrying. Patients who engage in such practices have reported feeling more in control and are able to spend other times throughout the day occupying themselves with other things. This has been shown to have a positive impact on mental well-being (Mikula, P, et al. 2021). Other practices include keeping a journal, to record symptoms and relapse as they happen. This way you may be able to identify a pattern, or certain foods, or activities that trigger your condition to worsen. 

By identifying your fears,  and the underlying causes of anxiety, it may become easier to share this information with someone you can trust, and reduce the likelihood of distorted thinking and its negative effect on your quality of life (Definition of MS, 2022). 

Please see the link below for research based support and information (Definition of MS, 2022).