4 Lessons I Learned During the Year Since My Epilepsy Diagnosis

It is now been a year since I was diagnosed with epilepsy. So what have I learned since then?

Naturally epilepsy has become a big part of my life. And I’ve mostly learned that it sucks. It’s annoying, and it can be scary. Not just for me, but for other sufferers.

I learned that epilepsy really sucks when I heard the news over Christmas that a woman who is a part of a group I belong to on Facebook passed away as a result of a seizure. It made a lot of us realize that seizures can strike at any time, which makes epilepsy a scary disorder.

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I learned that brain fog is a real thing. I learned that my brain apparently does some cool stuff when it hears music. I learned there are some pretty cool people with epilepsy. I also learned other important lessons I would like to share with you.

First Lesson: Epilepsy nurses are godsends.

I seriously don’t know what I would have done without mine.

I went to my appointment with my consultant, who gave me the diagnosis. And once I’d gotten over my minor freakout, he asked if I had any questions. And of course, I said, “No, I’m good, thank you.” Then, after leaving the room, I realized I had approximately 8,157,491 questions, which I was able to ask my nurse when I saw her a couple of weeks later. I asked her all my questions – notepad at the ready – and she went through each one in great detail, never rushing me, and giving me plenty of chances to ask follow-up questions. She really was marvelous! And since then, she has given me tons of support and guidance and has generally been a huge godsend!

This also extends to the NHS (National Health Service) as a whole. Seriously. Yes it may have its flaws, but I’ve spoken to people across the pond who are in hundreds of thousands of dollars of debt due to medical bills, or having procedures that insurance doesn’t cover. I have never had to pay for any of my treatment at all. In my opinion, the NHS is pretty darned awesome! I have a fair chance of being on medication forever, but because of the NHS, I get free prescriptions. So I’m not ending up paying a lot for something that I really can’t live without. So there are a few silver linings, despite epilepsy being completely sucky.

Second Lesson: Being open about it is the best way forward.

I hate telling people I have epilepsy. Particularly employers. I feel like there’s nothing more awkward when starting a job than saying, “Hey! Thanks for employing me. By the way, I might hit the floor and freak everybody out once in a while. Hope you don’t regret employing me!”

When my epilepsy was fairly well controlled, I didn’t tell my employers. Then, when I inevitably hit the floor, they of course freaked out and called an ambulance, and I got a slapped wrist from the paramedic for not being honest about it. Lesson well and truly learned.

In my most recent job, I realized it would definitely be best to tell them from the start.

At University, I had to make a “Self-Management Plan” and have a “Summary of Adjustments,” which felt awkward at first, but it actually turned out to be really useful. In my last job, I spoke to my boss during training, I used the points from the self management plan – explained that I had epilepsy, said the medication was currently working well, but I was honest about what could happen and what to do if it does, and she was totally prepared and relaxed about it. So when it did happen, she knew what to do, knew it was normal for me and was completely fine about it.

So I have realized now that honesty is the best policy, and no matter how controlled I think it is, there is always the risk of provoked seizures when I am stressed, tired, ill or generally run-down.

Third Lesson: “Manning up” is not the best way to deal with epilepsy.

Doing a masters degree is tough. Long work hours are tough. Putting them together was not a good idea for me. But at the time, I thought being tired was not an excuse not to work hard. I thought people get tired and they carry on.

However, when I get tired, I might end up having seizures. And then I’d say, “It’s fine. I have to keep going because I need to work.” And then I have a seizure. And then I get told to be careful because I’m exhausting myself, and I need to look after my health. And I don’t listen, because I need to work. Are you starting to see the cycle?

I learned my lesson when I was overworking myself to the max and in an almost constant state of panic. Working very long hours while trying to complete my essays was basically impossible, and I knew this. But I kept going and ignored the signs, the exhaustion, and the cold I couldn’t shake off. Then I had four convulsive seizures in a row. I ended up in A&E (Accident & Emergency), where a doctor warned me to slow down or die. I went to stay with my parents, slept almost constantly for about a week and gradually got back on my feet again. I vow to never let myself get to that point again.

Final Lesson: On the whole, people are really great.

Honestly. People are wonderful. I have had masses of support this year from friends, family, co-workers, course-mates, tutors, disability advisors, my GP (general practitioner), my consultant, my incredible epilepsy nurse, A&E doctors, people in online epilepsy support groups, even strangers in the street… The list goes on.

After moving to London, having a seizure alone on the underground was probably my biggest fear. So naturally, it happened. I had visions of being robbed or just left there while people stepped over me, tutting because I was in the way. But when it happened, I came around to a lovely vet-student who stayed with me while I recovered, gave me her number and told me to text her when I got home, and was generally a very lovely person. You find out an awful lot about the kindness of strangers, when you really need it.

A year after diagnosis. I have learned a lot about myself and other people. Although I would prefer not to have epilepsy, I have learned to see the silver linings.

This year, I aim for seizure freedom. I aim to look after myself. To give myself me-time when I need it. And I aim to tell any employers about my epilepsy from the start to prevent any panicking.

I also aim to make my bed every day, eat more fruit, cut the sugar from my tea, go for runs three times a week and update my blog more often… but I’m not sure how successful they will be!

I’ll keep you posted.

Follow this journey on Academic Epileptic.

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