Living with epilepsy and potential stigma

[Varsh86]

I have had epilepsy since aged 21 (13 years back) and I feel I am still struggling with the diagnosis despite it being so long ago and it’s usually well controlled on meds! I think my self acceptance comes in waves and usually plummets post episode. I had two seizures at work a week ago and was admitted to hospital and most colleagues were unaware of my diagnosis. I think I felt ashamed and didn’t want to ‘burden’ others or feel pitied. Do others still feel they can’t own their full selves and ‘come out’ in public due to fear of stigma?

I recently came across beauty influencer Camila Coelho speak openly about her diagnosis and she’s the only person in media I feel I can relate to. I don’t know anyone with epilepsy in real life. Her video has given me more courage to open up and join this forum.

I just showed my dad her video in my attempt to be vulnerable however felt he wasn’t listening and taking it as seriously and I was surprised how angry and emotional I became! I blamed him for why I rejected myself as I remember an offhand comment not to disclose my diagnosis and no one would want to marry me because of it! 😞 I realise I’m still grieving over a decade later snd I’m angry about having epilepsy and not feeling like a proper adult!

Would be good to know who else may have felt this and what helps! Thanks

[EpilepsyAction1 Partner Epilepsy Action]

Hi there

Coping with a diagnosis of epilepsy and others perceptions and reactions can be tough. But its good you found support in someone else's experience of living with epilepsy. It can take a lot of courage to make that first move to reach out to others.

Making links with other people affected by epilepsy who can understand how living with epilepsy feels can really help. As well as the forum here we have some other ways you might be able to make links.

forum.epilepsy.org.uk/

facebook.com/epilepsyaction

instagram.com/epilepsyaction/

twitter.com/epilepsyaction

We're also running some virtual support groups which you'd be welcome to join at any time:

epilepsy.org.uk/search/goog...

Coming to terms with living with epilepsy can be hard. You aren't on your own with feeling like you are still grieving. And we talk to people on the helpline who feel a range of emotions about their diagnosis. Support and information can help. As well as the support links above we have some website information about living with epilepsy which may be useful for you: epilepsy.org.uk/info/daily-...

We also have some information about work and epilepsy. This explains your rights at work but it also explains a little about talking to people at work:

epilepsy.org.uk/info/employ...

If we can be of any more help, you'd be welcome to talk to us at the Epilepsy Action Helpline ( epilepsy.org.uk/info/suppor.... The number is freephone 0808 800 5050 and we are open 8.30 – 7pm Monday to Thursday, 8.30am to 4.30pm Friday and 10am – 4pm Saturday.

Regards

Mags

Epilepsy Action Helpline Team

[Jessica_Burt]

Hi, I’m so sorry to hear how you are feeling.I would just like to let you know that you are not alone. I feel EXACTLY like this every day and I’ve been diagnosed for 5 years now so quite a while. I also don’t feel like a proper adult and I’m 23, I’m so dependent on my family.

The only difference is I am very very open about my diagnosis because I have 10-14 seizures a day currently so I have to be. Although some people may treat you differently I feel like talking about it always helps. It is not something to hide!

I hope this helps in some way. Always here for a chat x