I have many family and friends who are super loving and supportive and they help me out with my seizures and with the fact that I have a chronic condition. When I was first diagnosed with epilepsy, my mom was my major advocate and support for my epilepsy. She was there by my side to support me, to advocate on my behalf, and to listen to me. Thankfully, my seizures were well controlled for ten years of those thirteen, but that’s not to say I did not need help. As I have gotten older, my support system has gotten wider, as I have had to depend on my boyfriend and friends, as well as other family members for help with my epilepsy.
I have also learned that there are things that people can do that are very helpful, in addition there are things that are not so helpful. If you are a family member, loved one, or friend of a person living with epilepsy, and you are wondering what you can do to show your support without being suffocating or too distant, here are some tips:
Ask if your Friend/Loved One if they have had any Recent Seizures
Now this question might not be necessary depending on your relationship with the person. If you are a parent or loved one, you may know the status of the person with epilepsy’s seizures. But say if you are a friend, it doesn’t hurt to bring it up. In my experience, it shows that my friends care and want to know the current state of my health. It can be an uncomfortable topic, only because it is something that I am trying to forget about and move on from, but knowing that the support is there and that I have friends who care, mean the world to me.
If you are a parent or boyfriend/girlfriend/spouse and you know the status of the seizures, gently ask them if they have been recording their seizures. Having up to date records of current seizures is important, because then it can be brought to the neurologist on the next appointment. Even if possible, help them record the details of the seizure if they are having difficulty remembering what happened.
Be Available to Talk About the Seizures
After my seizures, I find it the most useful to talk to someone about it, especially if I had a bad fall or had a bad injury after it. It’s especially useful if I can explain what was happening leading up to the seizure. Seizures can be very traumatic experiences for some, and by talking about it, it lessens the emotional upset that usually occurs afterwards. If you absolutely cannot talk about the seizures, be upfront with your friend, so he or she knows that they should go to someone else.
Know your Own Boundaries
This ties into the above tip. Know how much you are able to support. (This suggestion is mostly for friends). If you aren’t able to talk about seizures, or be there in case of emergency, it is important to tell the person with epilepsy. In my own experience, I have been in crisis situations where I have had to call friends and had to call people for support. In a moment of crisis, it is imperative that I know who I can and cannot call.
Be Understanding if Plans Need to be Changed
Sometimes I’ll need to change plans, because I’ll suddenly be feeling too tired to go out, or because I feel a seizure coming on. Sleep is very important for most people who have Epilepsy, because not enough sleep can trigger seizures. (At least for me!!) I am generally good at spacing my plans out, but sometimes I will need to cancel my plans due to feeling overtired or not feeling up to leaving the house. Don’t take this personally. Just know that your friend/etc, is taking good care of themselves and there’s always tomorrow.
Learn First Aid for Seizures
When I meet up with my friends, I always tell them what to do should I have a seizure in their presence. I have a lot of different types of seizures, and they don’t all look alike. Sometimes I might collapse without warning, I might shake a little, become rigid, etc. I tell them that if I feel funny, and we are walking along, I will sit down on the ground immediately, because I know that I will fall and really hurt myself. It sounds odd, but if you can know what to do in the event of an emergency, you can really help a friend or loved one out. I also find it extremely useful if people are calm and relaxed in the event of my seizures. If people are panicked and swear, I find that it makes me more tense. (I am conscious during my seizures). So: be calm, reassure your friend or loved one, and know the appropriate first aid.
Remember: A Person with Epilepsy is NOT their Epilepsy
So what do I mean by that? Even though I have seizures, and sometimes feel tired and get headaches as a result of my medications, I am not simply a person with epilepsy. I am a student, a friend, a girlfriend, a daughter, and completely motivated to live my life to the fullest despite this medical condition. Even though it’s good to ask your friend how their health is, try not to make them feel like it’s the only topic that you talk about. I never want to be seen as ‘the girl with seizures’ so the worst thing you could do is to focus your conversations on just that. Remember your common interests, and talk just like you would as if the person didn’t have a chronic condition. It’s pretty simple.
I hope these tips have been useful, whether you have epilepsy yourself, or you are a friend, parent, or loved one of a person living with epilepsy. Hope you’re doing well, and lots of love! xox