Katie was diagnosed with epilepsy when she was just 14 years old. Here Katie shares how the COVID-19 pandemic has affected her wellbeing, mental health and how Epilepsy Scotland’s wellbeing service has helped her.
How did you feel when you were first diagnosed?
Quite uptight and anxious about the thought of having to start taking meds.
What impact has the COVID-19 pandemic had on your epilepsy and seizures?
Since lockdown, I would say that my epilepsy has slightly lessened. Life has just been so quiet, with nowhere to go at all, so this has probably eased any anxious times I would tend to go through.
Has the COVID-19 pandemic affected your general wellbeing in terms of your mental health? If so, in what way?
My general happiness has been lower, with actual contact with friends and even most family having been stopped. Knowing that everyone has been in the same position has made it easier.
What has been the biggest challenges you have faced during the COVID-19 pandemic? How have you tried to overcome them?
Really it has been due to restriction of movement, so feeling there’s been nowhere to go for months on end. In order to ease this I made a point of going hourly walks around my area with my mum three or four days a week.
With lockdown restrictions being lifted and things starting to return to some kind of normal. Do you have any anxiety about things returning to normal post pandemic?
I do feel pleased and look forward to things returning to normal, as life should start to get more interesting. Just even being able to meet people now and then will make me happier.
There is a slight nervous feeling over how things might go with the virus though.
What are the benefits that you get from Epilepsy Scotland’s wellbeing service and how has it helped you?
This group has been fantastic. Firstly, it’s been great to meet and talk to others with epilepsy.
It really helps to hear others talk of how things affect them physically and emotionally, both in similar ways to mine and differently. It stopped me from feeling so alone.
The friendliness of everyone has been great and JV has explained so much about how to be mindful and how to reach that place.
It has been so relaxing each time he has taken the team to this point together. I can also now do this on my own when needed.
We always say that epilepsy is more than seizures. Do you feel this has been your experience?
My episodic memory has been badly affected, with general memory not being too great either. This has really made me quite anxious at times, feeling as though I’m not fully aware of things.
Seizures have also worsened over time which I never expected.
What would you say to someone who has been recently diagnosed?
I’d tell them they need to realise they’re not alone. There are plenty of others in this position and also various different types of epilepsy.
Any information they might be looking for on this should be available online.
I’d definitely suggest that Epilepsy Scotland is a fantastic help in so many ways.
Also, that the Wellbeing Group would be so useful to them explaining all that I have noted in the wellness question above to them.