Loneliness

[marc37]

I find epilepsy a very lonely sickness

There is a lot of stigma, or people just don’t understand. I end up hiding my condition from most people, lying about whether a bump on my head is really from a seizure.

I am not sure what the consequences of being more open about it.

[Hs239]

Hey there

I’ve been diagnosed with epilepsy for a short while and the after effects of seizures are not really visible to maybe I’m not in similar positions to yourself.

At first I found it hard to come to terms with the diagnosis and kept it to myself, probably for similar reasons to yourself around stigma etc, but overtime I’ve let the people close to me know about it. It really has eased my mind on having this condition as it feels like the mental burden epilepsy has is now shared from my perspective. Of course, I’ve had to educate people on this but having a support network there could be really helpful. Hopefully your friends/family can be supportive about it and remain positive, to help you and remove any loneliness.

I wouldn’t tell everyone I know about it though as i feel it’d be pointless, so it’s just finding the right balance I guess.

To summarise I don’t think there’s a consequence as long as the people you’re planning to tell are sensible, positive and are supportive

All the best

[marc37 in reply to Hs239]

Thanks Hs239! I have had major seizures over the past 50 years. You are right about the importance of a small, trusted support network. Sometimes, I feel if it was not for those people I would not have made it through.

I guess this is also the reason I joined this community. For solidarity. People in general just don’t understand what it is like. It is definitely a condition that has stigma.

Thanks

[EpilepsyAction1 Partner Epilepsy Action]

Hi there – it sounds like you’re having a really tough time. Dealing with others reactions can be difficult and it makes it hard to tell people about your epilepsy. Linking with others and sharing experiences can really help so I really hope you hear from others here.

You might also find it helpful to read our information about telling people about your epilepsy. It’s on our young person’s webpage but its relevant for everyone: epilepsy.org.uk/info/childr...

Other people’s reactions can have a lot of impact but there may be ways of tackling this. Often people don’t know enough about epilepsy and this can make them afraid of how they would cope. We have information on the Epilepsy Action website you might be able to share: epilepsy.org.uk/info/what-i....

We also have a free first aid short course that anyone can do: learn.epilepsy.org.uk/what-....

I’m also linking you to our wellbeing information. This explores some of the feelings you might have about living with epilepsy:

epilepsy.org.uk/info/wellbeing

You’d be welcome to call and talk to us at the Helpline if you want to talk through your experiences or feelings. Its confidential and free to phone on 0808 800 5050: epilepsy.org.uk/info/suppor...

We’ve also got some other online services you may be able to use to link up with others:

forum.epilepsy.org.uk/

facebook.com/epilepsyaction

instagram.com/epilepsyaction/

twitter.com/epilepsyaction

I hope you can find a way forwards with this

Regards

Mags

Epilepsy Action Helpline Team.

[planetzed]

Hello Marc, I have just been diagnosed as of 31st January and know exactly how you feel. I suppose I am of the opinion that certain people need to know and the ones that don't are probably not that important to you.I made sure to tell my manager and several close neighbours in case I have a seizure away from my wife, as well as my closest friends. Nobody has acted in an offensive way towards me because of my diagnosis so far.

I already had a life changing condition that has taken me years to adapt to and realised that humour and not taking yourself too seriously goes a long way to living normally. These chronic conditions can easily get you down and make you feel isolated or fearful but the one thing I have found most traumatic of all is wetting myself. Nobody seems too bothered about it but I am mortally embarrased.

Hope all is going well with you as I realise your post was written several months ago,

Take care,

Julian.