Learning With Lucy: Her Experience With Epilepsy
Hello everyone. Recently I had the pleasure of speaking to a very special someone who provided insights to her direct lived experience with epilepsy. Something this person made me realize is that something does not have to be good for you to get good out of it. I'd like to thank @Lucy2 for writing her story in the Inclusivity Diaries.
Q: Hello Lucy, thank you for taking time out to speak with us today. What do you think about the inclusivity diaries and what motivated you to share your story?
Hello Nicole , Thank you for giving me the opportunity to chat with you today. I think the inclusivity diaries give a very positive opportunity to share our own medical struggles, in the hope that they bring some comfort to others who may be going through this and also to dispel fears.
Q: What is something about epilepsy that you feel is not accurately represented in the media:
I hate the way the media uses the term 'epileptic' eg: ‘they are epileptic’ it really makes me upset, it’s derogatory and belittling, I’m not epileptic, I have epilepsy!
Q: What signs or symptoms did you discover that made you go in search of medical advice?
Well, just writing this brings back such horrible memories. I suddenly had an aura as I got out of the shower and I felt scared and knew I was about to pass out. I was taken to the hospital and later sent home, but this happened almost evening for 2weeks until they admitted me to the hospital, it was terrifying.
Q: How was your experience during your journey of getting an accurate diagnosis, would you say the medical professionals listened to you and responded promptly?
It was a very frightening time, it was several scary months before I was diagnosed correctly.
Q: What are things you did not know about epilepsy that you now know?
I didn’t know it was a lifetime sentence or that I would be dependent on medication for life, that upsets me.
Q: What are things that you wished people knew about epilepsy, and common misconceptions they tend to have?
I wish people would view epilepsy just as they do other medical issues, instead of being so shocked and afraid, that’s why there is this awful stigma around epilepsy. Be more compassionate and supportive, and understand that we have to work twice as hard as others to achieve anything in life.
Q: What accommodations or ‘lifestyle’ changes have you made for the purpose of managing your epilepsy?
I’ll be honest, epilepsy ruined my life! I had a wonderful job that I had to leave, I couldn’t drive anymore so I was then housebound and had to rely on others. It took many years to accept the loss of my life and to find other ways of living with any meaning. That’s why I have such an affinity with anyone grieving ,grief comes in many forms, many forget that!
Unfortunately, I was too afraid to look online for support, I hated the very word epilepsy and still do, if I’d had a place like the 7cups community to support me, my life would have been so much better.
Q: Are there any stories you’d like to share regarding the struggles you’ve had with living with epilepsy?
I found it difficult to express myself, the illness and medication took its toll on my brain, so I had to fight to keep my brain working, so I studied, took courses, volunteered online, anything that made my brain work, and I achieved a BA hons degree and now I am in my final year of another degree for Psychology & Counselling, so I am very proud of myself. Ironically, I wouldn’t have achieved that if I hadn’t had epilepsy. So for anyone who feels their future is over, just go for your dreams, you can achieve whatever you want in life.
Q: As a person who also has severe asthma, do you think it contributes or affects the conditions or symptoms that come with epilepsy?
Interesting question Nicole, no I don't think it does, in fact I’ve had more admissions due to asthma than epilepsy, both late onset illnesses, which now you’ve raised the question. hmm… I may look into this
Q: What advice do you have for people who are having a hard time getting a diagnosis for epilepsy, or people experiencing prejudice because of it?
My heart goes out to them<3. Stay strong and push for appointments and tests, calm your fears and concerns by using distractions, write a journal, listen to calming music and unlike me find online support and join a community like ours, don’t give up!
Q: As a community leader and an exceptional listener on 7 Cups, in what way do you think you have impacted the community and how has the community impacted you?
I like to feel I have given my best to 7 Cups and after seven and a half years, I think I’ve made my mark, like so many other excellent Listeners here. 7 Cups has been a massive influence on my life and I’m eternally thankful to @GlenM @Heather225 @CheeryMango for trusting in my abilities.
Would you like to share anything else?
Thank you yes, There are now seizure alert dogs, who can sense a seizure coming on, giving sufferers time to get themselves into a safe position. This means that not only are you safer but you’ll have more confidence to have a life outside your home.
Thank you so much Nicole <3
Epilepsy is a neurological disorder in which brain activity becomes abnormal (imbalanced) causing seizures or periods of unusual behaviour, sensations and sometimes loss of awareness. In order to be diagnosed with epilepsy one must have at least two seizures without a known trigger that happens at least 24 hours apart. To read more about epilepsy visit this post.
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