Educating Friends and Family About Epilepsy

courage to let go

So I thought that this would be an important blog post to write about. I know that I am not the only one who needs to educate others about my Epilepsy. I have been grumpy about educating people about Epilepsy because- hello! Google! But then I realized some important things when I was talking to my boyfriend’s family about my Epilepsy and Seizures.

1. First of All, People Care
I know that sometimes I felt frustrated about people asking me about my seizures because I felt that my Epilepsy was all that I am. That is so not the case! People ask me because they want to know what to do in the event of a seizure, and what to expect. People also care about my well-being, which is a really important factor to remember!

2. Teaching Seizure First Aid is Crucial
This point may not be as crucial if you *only* have nocturnal seizures, but if you could have a seizure at any point- whether in the mall or on the couch, your friends and family need to know what to do. Seizures are scary, and from personal experience- I know that having people know what to do in the event of one makes it much better.
In case you have forgotten here are the first aid steps:
1. Move any dangerous furniture or items
2. Loosen any tight clothing
3. Do not restrain the person
4. Stay calm
5. Time the seizure- if over 5 mins call 911
6. Put something under their head if they fall and roll them on to their side (sometimes there is a build up of saliva during a seizure which could make it difficult for the person with epilepsy to breathe).
7. Be reassuring after the seizure, and stay calm as they “come to”

3. Stigma still Exists!
Talking to people about your Epilepsy, and also that you are able to do so many other things is so important! It is important to talk about other interests, so people know what to do, but it is not a secret that you feel ashamed of. Shame is a very heavy emotion. Also sweeping Epilepsy under the rug is not healthy, and is contributing to more stigma- perhaps due to internalized stigma. Let’s get rid of stigma! We all have our limitations and challenges!

4. Being Vulnerable Builds Bridges
I know I have talked about this before, and Brene Brown, Social Work PhD studies vulnerability. But think about this- if you are able to be open about your own struggles, maybe the other person will come out about their struggles- whether they are chronic illness, mental health, children with either of the former, financial issues- the list goes on and on. You never know what will happen when you open up, but you may find a lasting connection with someone.

I hope you are all doing well! Keep fighting the good fight! xox

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