I’d like to begin by thanking the many of you that took you time to support me in completing my survey on psychological support in multiple sclerosis as part of my PhD research. Based on the information you’ve provided on your previous experience of psychological support, as well as what you would like to see provided based on your own psychological needs, I’m currently using the information you provided from this to develop an online intervention to support people with MS in managing their mental health. I’m excited to share this with you all very soon. My survey will still be open for the next 4-6 weeks if anyone is still interested in joining us in this endeavor then please do hop on board and complete the survey here. 

In the meantime, we examined the responses to the questions related to experiences of COVID-19. I thought now would be an ideal time to share our findings given that some of the key findings noted related to the link between mental health, coping and overall impact of COVID-19 in people with MS.

Findings from questionnaire

A distinct difference was found between the reported experiences of those who stated a negative impact and those who reported neutral or positive impact.

Levels of MS related concern were higher amongst those who reported a negative impact. That is, those who report a negative COVID-19 impact also reported more concern related to things such as anxiety, loss, uncertainty and impact of MS on relationships and future life goals. Whilst we can’t determine whether it is the COVID-19 situation that has exacerbated these concerns in those who are having a more difficult time right now, or whether it is the fact that existing MS related concerns has lead to a more negative COVID-19 experience, what is clear is that, those who are going through a negative COVID-19 experience are those who are also more concerned about components of their MS that could impact their overall quality of life.

This is very disheartening given that over a third of those who took part in the survey at the time of analyzing the data were amongst those in this category.

Having hope

However, one of the most exciting findings for me was that having compared the experiences of those who reported a negative, neutral and positive Covid-19 impact it was clear that what distinguished those in the positive group as well as many in the neutral group was the use of helpful coping strategies to manage the negative consequences of the COVID-19 pandemic. It is our hope that sharing these strategies that are working for those who are faring well at this time with those who are struggling will help to provide a useful resource and hope for improvement in psychological well-being during a time when many are struggling.

Helpful coping strategies reported by those who have found COVID-19 to yield a neutral of positive impact generally fit into 2 categories that centre either on taking a more practical, problem focused approach, or taking a more thoughtful, emotion focused approach.

Those who reported using a practical and problem focused approach in coping with COVID-19 reported doing so by actively making use of the extra time that has come out of being in a state of lockdown such as engaging more in enjoyable hobbies, or even taking up new ones, spending more time with family at home doing activities that promote and nurture bonding, and actively making the decision to step back and use the time to look after themselves, both physically and psychological to allow any existing symptoms to ease up, especially fatigue.

The other helpful coping approach used by those who reported a neutral or positive impact related to thoughts and consequent emotions such as reflecting on the benefits and positives that have arisen as a result of the COVID-19 induced lockdown and using this to frame the situation in a more positive light and experience psychological growth as a result. Additionally, thoughts relating to accepting the situation also seemed to be linked to neutral and positive outcomes.

Understanding what is working well for people with MS during this stressful time can help to provide insight to those who are struggling at this time as to which approaches that might be worth embracing as a means to ease the present burdens and improve mental health.