Dave was diagnosed with epilepsy 38 years ago when he was just 17 years old. As part of our mental health and epilepsy campaign, Dave shares how his epilepsy diagnosis affected his mental health.
Please be aware that Dave’s story contains him talking about suicide which may be upsetting for some people.
How did you feel when you were first diagnosed?
I was devastated, I knew nothing about epilepsy and thought that my life was over. I was given very little information or support.
What type of seizures do you have? How does it affect you?
I have three types of seizures and the effects vary but with some similarities.
Myoclonic jerks happen on a daily basis. These don’t really affect me other than they are somewhat embarrassing especially if they cause me to throw things and spill drinks etc.
If I have an excessive amount, it’s often a warning that a focal or tonic-clonic seizure is on its way.
Focal impaired awareness seizures can and do happen anytime and I tend to have them in clusters. They happen regularly and leave me feeling confused and exhausted, I have many of these every week.
Tonic-clonic seizures happen to me less frequently, usually two to three a month but for me, they have the worst effect.
They leave me with sore muscles, headaches, and often with injuries.
It can take two to three days to recover and I need to sleep for a long time following one. Post-seizure I feel broken, guilty (I always blame myself), and exhausted.
What challenges have you faced since being diagnosed with epilepsy?
Initially, my whole life changed, my ambition at that age was to be a Firefighter and my diagnosis put an immediate stop to that.
I now feel that every day is a challenge and have to plan everything I do carefully and often end up cancelling plans at the last minute.
I worry about having seizures outside as I’ve had many negative reactions from members of the public.
Having to stop working was and is a massive challenge for me and I’m often left feeling like a burden and somewhat useless.
Being unable to cook using a conventional cooker, using a bath, and setting up my home to eliminate potential hazards are all challenging too.
I used to be an avid reader but my memory is affected by my seizures and the copious amounts of medication that I take daily which has little to no effect as my seizures are refractory.
Do you think your epilepsy affects your mental health? If so, in what ways?
The impact on my mental health is massive. I have anxiety and depression which are both affected by my seizures.
I always live in hope that my next seizure will be my last seizure and when they inevitably come my mental health deteriorates.
Knowing that a seizure can come at any time causes me a huge amount of anxiety and it can take me an hour or two just to leave the house on days that I am physically able to do so.
I often have thoughts of suicide and feel at times that it would be the only way to beat this horrible condition.
The constant recovery from seizures. Being unable to commit to plans, “just in case”. Often have to justify my epilepsy to official bodies eg DWP assessments, and being judged by people that don’t understand that epilepsy is so much more than having a seizure and then getting up again, and recovering from injuries caused by seizures.
The horrible side effects of medication, and feeling like you are letting people down all have an effect on my mental health and I have an ongoing battle trying to overcome these feelings.
What kind of support have you received to help your mental health?
I was referred to a Neuropsychologist and received CBT (Cognitive Behaviour Therapy). This was working well for me however as the NHS has limited funding, unfortunately, this had to come to an end.
What has helped you with your mental health?
I use exercise as a means of relaxing and work out at home with weights and practice Tai Chi which I find helps me to relax and alleviate negative and anxious thoughts.
I also use online support groups which are very useful and I am an Admin in an independent group and a Moderator for Epilepsy Scotland’s Facebook Support Group.
Also, I find sharing my experiences and helping and supporting others who are going through the same challenges as me to be very therapeutic.
Doing this volunteering gives my confidence a huge boost and helps me to feel useful.
Also, I have a wonderful partner Clair who is a massive support along with some very good friends with who I can talk about my epilepsy and my mental health.
We always say that epilepsy is more than seizures. Do you feel this has been your experience?
Absolutely, a lot of what I have said previously shows this fact to be true.
In some ways the seizures, although horribly debilitating, are easier to deal with than recovering from injuries caused by seizures.
The horrible side effects of medication, feeling like you are letting people down, constant risk assessing everything for safety, feeling exhausted, going to sleep not knowing if you will wake up well or at all, suicidal thoughts, having to justify these effects to the DWP, having to stop working and the anxiety caused by the general unpredictable nature of epilepsy.
Do you feel that epilepsy has stopped you from doing what you want to do?
From the age of 17 until about 10 years ago my seizures were reasonably well controlled and mostly nocturnal, which meant I was able to live a reasonably unrestricted life with exception of not being allowed to drive and limits to what career I could pursue.
When my seizure activity increased rapidly to where I am now I had to give up my work as a Support Worker and that left me devastated and lost not knowing if I would ever work again.
Epilepsy has also left me with the fear of going out or trying new things. It had a huge impact on my confidence and has definitely stopped me from living my life as fully as I would want.
What advice would you give to someone with epilepsy who was struggling with their mental health?
Talk to someone, your GP, your Epilepsy Nurse, your Neurologist, your partner, your friends, or your family.
I found admitting that I had depression and talking about it really helped me to start seeking help and ways to manage these feelings.
Like epilepsy, mental health comes with stigmas and judgments and the way to overcome these is for us all to talk more openly, to spread awareness.
Know that you really don’t need to go through it alone, find that voice and speak to someone. It’s really hard to do but it’s the first step to managing your mental health and sets you on the road to recovery.
Is there anything else you would like to add?
I have been very open and honest in the hope that even one person may relate to my story and seek help.
Also, I would like to say that in spite of all that I’ve said I still try to live and enjoy my life and there are days when I very much do.
I continue to live in hope that my seizures will stop and that my mental health will continue to improve.
I do have some very dark days but my determination to overcome them will always be victorious.
We have launched Scotland’s first-ever national survey seeking to understand the effect epilepsy can have on the mental health of someone who has a neurological condition. To complete the survey, please click here.