The guilt of living with epilepsy

Published by Mica Howard on

Life with epilepsy isn’t simple. You need a support system and at times you need to rely on that support system heavily. This can often lead to strong feelings of guilt, of being an inconvenience to those around you. Epilepsy took a chunk of my freedom and replaced it with a now specialist support system. This is not to say I don’t want a support system. I’m incredibly grateful, and always will be, for my loved ones who support me through the tough times that epilepsy brings. Yet neither myself nor those in my support system ever anticipated my epilepsy diagnosis in the first place. I was thrown in the deep end and my support system stopped me from drowning.

But no one ever said having a support system made it easy. My journey with epilepsy has been a difficult road for myself and my loved ones.

Epilepsy is a thief of freedom

I was diagnosed with generalised epilepsy aged 16, just as you start to gain your independence. Luckily I didn’t feel the big impact of seizures on my freedom for a good few years. Up until I went to university aged 18, I spent pretty much my entire free time riding and competing horses. Riding horses brings me peace, so it’s no surprise that I’d spend hours on end with them.

riding horses lowers my stress, which then helps control my epilepsy
Naz enjoying her retirement with a trip to the beach

The first time epilepsy got in my way was when I turned 17 and was unable to start driving. This was frustrating because I have always been an individual that gets things done. Although a car at 17 is a luxury, not being allowed to get my drivers license through no fault of my own left me feeling wronged. My epilepsy had robbed me of achieving one of my goals. It kept me relying on family to take me where I needed to be. I still made my own way about the majority of the time and still do, but I still have to fit my plans around public transport.

After uni, epilepsy narrowed my career paths. I would’ve loved to become an air hostess and be paid to travel the world. Or pursue a career with horses, but both aren’t feasible without a seizure-free life.

I had no choice but to get over this, and I did (mostly). I set my sights on a different career path which I am now pursuing successfully. But this doesn’t mean I stopped relying on my loved ones for extra support emotionally and for life in general.

Heavily relying on my support system is the root of my epilepsy-related guilt

Over the years I’ve had no choice but to rely on those around me. For years my loved ones have supported me through the highs and lows of living with epilepsy. Yes, no one does it alone, but living with a chronic illness can often make you feel like you’re putting other people out. The worst thing is, there isn’t really anything you can do about it. Which, by no surprise, only adds to the guilt that epilepsy brings.

For each seizure, I need someone there to support me. No doubt about that. I need someone there to keep me safe and to help me calm down afterwards. The need to rely on someone so heavily in such instances was thrown upon me. It is incredibly draining not only physically, but emotionally too. The guilt of living with epilepsy then only becomes heavier when you see the impact of your illness on your loved ones.

The side effects of my epilepsy on those around me has tormented me for years. To stop the guilt of epilepsy weighing me down, I’ve had to make peace with the fact that I rely on people. A lot. And it will stay that way unless my epilepsy decides to up and leave, just as quickly as it came.

Don’t let your epilepsy guilt weigh you down

I was only able to begin making peace once I addressed my feelings of guilt. I spoke to those around me about how much I rely on them. As it turned out no one thinks I rely on them too much, but that still doesn’t negate the emotional impact my epilepsy and seizures has on them.

There is nothing I can do about my seizures and I can’t change them. Tonic-clonic seizures can be harrowing and there is no way I can survive them alone. I also can’t control the impact supporting me through my epilepsy and seizures has one those around me.

This is something you just have to accept when you have epilepsy, for the sake of your own mental health.

It’s okay to rely on your loved ones

epilepsy guilt
Relying on loved ones shouldn’t make you feel guilty

Epilepsy is something that cannot be cured and for a lot of people, including myself, is uncontrolled by medication. It can be easy to feel as though you are putting others out because of your seizures, but it’s important to remember that people don’t have to help you, no matter who they are. The people who support you with your chronic illness do so because they care, otherwise they wouldn’t be there.

It can help to remind yourself that no one does it alone. The added complication of a chronic illness like epileptic seizures only make you an even stronger person. So you may feel as though you rely too heavily on your loved ones now, but if they ever need your support through a tough time themselves, you’ve been through enough to support them through anything.


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