• Chloe James

So, I have epilepsy- now what?

My experience dealing with my own epilepsy diagnosis, and what I wish I'd known then

I will start by saying, this is an account of my own experience and I don’t mean to replace any advice from your own doctor!

What do I tell people?
How do I tell people?
Will I still be able to get a job?
Can I still have children?
Am I still allowed to drive?
How do I stay safe?
Could I die from this?

These were just a few of the questions that went around and around in my mind in the days and weeks following my diagnosis. Some of them were easily answered, some led to more questions, some were left unsatisfied.

At the time of my diagnosis I was in preparation for teacher’s training college, a dream I’d had since I was 5 years old. I couldn’t have been more excited, and I felt like this was *my* year, you know the feeling? Epilepsy changed all that for me.

At first, I just wanted answers. I did my best to push my emotions aside and approached it academically. If I knew everything about it, I could just outsmart it. Right? Yeah, I know how it sounds but it was how I coped at the beginning! I wrote a list, I researched triggers and side effects, and I decided that I could simply manage it.

I was so self conscious about telling anybody at teacher college and have them constantly worry about me-or worse think that I couldn’t be a teacher!- that I decided not to tell anyone. Logically, I decided that my lecturers needed a head’s up in the unlikely (I stressed to them) event that something happened. So I prepared a little speech for them, starting with a reassurance that it was no big deal, I just wanted them to have the facts and thought they should know. BUT it probably wouldn’t come up so they didn’t need to worry!

I thought I had it sussed. I had memorised the list of triggers and took measures to avoid them (FYI not a bad thing to do, just understand that it is unpredictable and frustrating- sometimes you just can’t control it!). And do you know how many seizures I had in my first two weeks there? 3.

My plan to outsmart epilepsy failed dramatically- in front of everyone!

What I hadn't- and couldn’t have!- prepared for

There seems to be a trend among doctors, at least from my own and others experiences that I’ve heard, where they fail to explain how long it can take to get medication and dosing right. I remember the doctors telling me all about the medication they were putting me on, the potential side effects, and how often I needed to take it. I don’t remember him telling me that it could take a while to figure out the right dose for me, or that the medication itself may not work for me and they may need to change it.

A head’s up would have been nice!

In my first year, my seizures were so uncontrolled that I had to pass on my first placement, a decision that at the time broke my heart (but in retrospect, started me on the path to finding the man I married. But that’s another story!). I spent weeks in and out of hospital, I felt like a burden to my flatmates and family and I was constantly on edge scared that I would go into a seizure.

What I wish they would have told me

  • How long it takes to get it right: I wish they would have told me how long it can take to get everything right- medication, dosing, triggers, all of it. And someone being honest that even with everything right, seizures may still happen.

  • If seizures happen, it’s not my fault: ok, so this might be a me thing, but like I mentioned, I’m a control freak! I thought if I could control all my triggers, I could stop seizures altogether. I wish someone would have told me that it doesn’t work this way. That even if it’s a good thing to do your best to manage triggers, if you do have a seizure it’s not because you did anything wrong!

  • Anxiety is normal, and it’s ok to talk about it Even with all of my control-freaking (or perhaps as a consequence of it!), I was dealing with pretty severe anxiety in the wake of my diagnosis. There’s a weight that comes with knowing you could lose control of your body at any moment, and it was something I did not cope with well. In retrospect, I wish I had talked to someone about it. But I was so worried about making other people worry, and felt so guilty about them dealing with my seizures already, that I kept quiet when I should have spoken out.

  • How to tell people I wish I had this more in hand, and over the years I’ve gotten better at the “hey, I’ve got epilepsy” speech. But I wish someone would have helped guide me through how to let others know, because sometimes they really need to. But how do you bring it up? And how much information do you need to share? And what if they freak out? I wish I had known how to handle this better in the beginning.

Basically, everyone deals with their diagnosis in their own way, and in their own time. If you or someone you love have just been diagnosed, give yourself space and time. Be gentle on yourself. Let yourself have whatever feelings you have and don’t be hard on yourself.

Your life will be different from now on, but you’ve got this!

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