Those living with MS have dealt with adversity and isolation long before the COVID-19 pandemic came into the world. But this past year has been a tough period for everyone. Now, reflecting on the past 12 months, we spoke to MS community members to see what was on their mind during this challenging time.
Birgit, Joao, Barbara and Jacobo have shared their perspective on navigating life with MS during this challenging time and offered up their thoughts on how they see life after lockdown
What do you hope life will look like after the pandemic, either for yourself or for people with MS more generally?
Jacobo: There are many lessons we need to learn from this pandemic, not only to be prepared for a similar event happening again, but to improve our lives for the future.
What we really need to realise is that we have to be able to adapt to new situations, and to be alert, even when going through hard times. We shouldn’t go back to being careless and hopefully this has taught us something positive for the future
Birgit: Not having to look at the rules around when shops can or can’t open, to be able to make a plan for the weekend on Tuesday without looking at the news to see what could have a negative impact on my plan. I think we all need to have more fun after the pandemic and I hope we are able to, there is lost time that we need to make up for!
What aspects of the current way of life would you like to continue beyond the pandemic?
Birgit: Giving myself time for self-reflection. During the pandemic we’ve all had more time to think about our lives, and what we want from it. Although it’s been a difficult year for us all, the ability to sit down, collect my thoughts, and relax has been a very welcome addition to my life.
The COVID-19 pandemic has given me more time to plan my day which has allowed myself to plan in more rest breaks. This is something that I hope can carry over into post pandemic life.
Barbara: There is a monthly book club that I am a part of, and it works surprisingly well online as I am able to attend more often. Pre-pandemic, I would often have to miss them as I would be tired after a day at work and/or fatigued from MS. Now, I simply have to log on in the comfort of my own home. Perhaps post-pandemic, we could have every third meeting in person and the rest online.
Has the pandemic taught you any lessons which you will take with you into the future?
Joao: The pandemic provided me with a new understanding of what I want from life. It’s made me realise the value of the smaller things. Like spending time with your family, face-to-face chats with my best friends, having an expresso in my local coffee shop while reading the daily newspaper. These are simple pleasures but things I will appreciate more than ever. I intend to take forward what I’ve learned during this pandemic period. My viewpoint is that our life is a fantastic and moving adventure and I hope after the pandemic there will be more adventures to be had!
Jacobo: The pandemic has shown us that, in many ways, the life we had pre-pandemic was quite easy and simplistic. If we keep living the same way, what has happened before is likely to happen again. We have been warned and we need grow over the coming years.
Do you feel hopeful about your MS care, post-pandemic?
Joao: I’m very optimistic about my life with MS after the pandemic. The way we’ve all tried to learn something new in adverse conditions will, in my opinion, help us face our challenges head on. And for those in healthcare, I’m sure they will have grown in more ways than one.
Barbara: The pandemic has changed healthcare drastically. We have had to adapt to online consultations. And whilst there are some drawbacks to virtual appointments, they can be quite beneficial for those who have trouble travelling to face-to-face appointments.
Because of this, I think virtual appointments will be here to stay. I would be happy if this happened because I have had some great experiences with my neurologist during this pandemic. It was a relief not to have to take a day off work, navigate a busy hospital, and have to find hospital parking just for a check-up.