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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@MyNameIsNicole
Thank you @Lucy2 for sharing with courage and honesty your personal lived experience.
I admire your determination and efforts in overcoming the limitations that were imposed on you, to build a life full of meaning, intellectual activity, and achievements.
Congratulations on graduating with honors, and on your upcoming Psychologist and Counsellor titles!
Among the many things I realized, it stands out how hurting might feel being defined by names that refer to medical conditions, so how careful I have to be in the way I refer to people.
This can be extended to all kinds of conditions. It might be very hurting to be defined, for example, as "obese" or "alcoholic" instead of being a person with alcoholism or obesity.
I had a colleague in a few courses in college who shared with me she had epilepsy. We used to meet often to study at the Library for hours. A lovely person who graduated with high grades and became a successful professional. She very rarely had seizures, but she was always very afraid of those coming while out of home. She would have benefitted a lot from a reassuring service dog.
It's wonderful how valuable these dogs have become in helping people with many kinds of issues. I didn't know they could also be trained to sense a seizure is coming. That is amazing and might certainly be of great help, as I remember the constant fear of my College colleague. I am glad for all those that benefit from this.
Thank you Nicole for another great interview! This series is a great contribution, I think, for understanding each other, and our common human condition within the diverse circumstances we might be in.
@HealingTalk
Thank you so much for your kind words, they mean so much to me <3
It's been a struggle at times and my heart goes out to anyone who has epilepsy, it is not easy
to live with and {{{hugs}}} to those that need it, I certainly did!
Lucy2
@lucy2
Thank you Lucy!
I take your message of being extra kind to those that struggle with epilepsy, and will include it in my personal precepts.
I wish you continue achieving your goals, and find moments of peace and happiness in your life!
All the best!
Marcelo.
Thank you for this beautiful interview, @MyNameIsNicole and @Lucy2!
@Lucy2 I have epilepsy to !! And hate it a lot I get diagnose when I’m a baby so don’t remember any thing about that but still hate to have seizures in stores or something because people freak out and call ambulance and stuff and it makes it scarier I wake up after seizure because is so much happening and some kids make fun of me because have them. My medicine stop working so I go almost a year no seizures but in May come back and very bad I have to be in hospital few times still trying fix medicine have work better so I don’t get to surf so much lately makes me really sad
just I am happy you share because make me feel no so lonely with epilepsy but I’m sorry you have them to is worst things
He’ll @theboymoana
I’m truly sorry that you’re having such a difficult time adjusting your medication ❤️
I empathise, people feel they are doing the right thing by getting help for you and I appreciate their sensitivity. What I would say is if you prefer not to be taken to hospital, you can have an Alert band or necklace that says ‘I have epilepsy, my seizure plan is ____, or something similar with a home phone no or something else, maybe this would suit you.
Very best wishes
Lucy❤️
Edited by AffyAvo Aug 28, 2022
From a medical POV, writing 'Please don't call an ambulance' on a necklace seems dangerous advice. There may be situations when that can be life-saving.
You could add a condition, though, as in 'if I'm unconscious for longer than...', maybe_ In any case, any such writing should be approved by your doctor.
@cloudySummer
Agreed, thank you for picking this up !
@lucy2 @cloudySummer
I made an edit to the post. Lucy2, I understand where you're coming from! Hopefully the edit I made matches with your line of thinking.
Here the major company that offers this has a hotline and an ID number on every piece. So I can give a more detailed plan with the company. I have also heard of people who have frequent seizure who carry their seizure plan on them in a visible location so a bystander doesn't jump immediately to calling an ambulance if it's not necessary.
@Lucy2 Thank you for sharing your story with us! I really enjoyed reading about your journey and I learned a lot!
@MyNameIsNicole Hi, this is a very interesting and touching article!
However... trying to read it made me feel dizzy because of the formatting where every third word is in a different font size. It was not fun to read it like this. Also, the contrast of the pink on white is very low, very difficult to read.
Please consider using formatting that is easier on the eyes to make it possible for everyone to focus on the content, not feel wobbly because of formatting.
Learn about contrast and accessibility here https://developer.mozilla.org/en-US/docs/Web/Accessibility/Understanding_WCAG/Perceivable/Color_contrast / https://accessibility.huit.harvard.edu/use-sufficient-color-contrast , and test it here, for example: https://webaim.org/resources/contrastchecker/
(I'd have contacted you privately, but there was no option for that on your listener page)
@cloudySummer
I'm really sorry about that. Funny enough, I thought that making the some words a different font size helps with making it easier to read. I'll have a look at the sites you shared, and I'll change the formatting.
Thank you, Nicole! Was that wirh the different font sizes your own idea to try and help readability, or is there any research / source for it that prompted you?
@Lucy2 I have no words. This was such a powerful piece and I want to thank you for opening up ❤️ I have a friend with epilepsy and it’s been so hard on her - it can really take a toll on your health. I think the way you continue to handle this is commendable
@usefulSummer3139
Thank you Summer ❤️
@MyNameIsNicole
Thankyou for sharing an amazing and inspiring interview.
@TheAlchemist1111
Thank you so much❤️
@MyNameIsNicole
@Lucy2 - thank you for sharing your life experiences with epilepsy, thank you for being a great person for everyone in the 7 Cups community!
@NewYorker11
Thank you for your kind words, I so appreciate them ❤️
Lucy2
@Lucy2 thanks so much for sharing your experiences.
Do you have a seizure alert dog? I have questions, some personally for myself, but maybe even a separate topic to be posted at some point.
I really love the mention of grief, I think it's coming up more frequently when it comes to illness support, but in general if you bring up grief it's still a fairly specific type of grief that gets the most coverage.
Hi @AffyAvo
Thank you so much for your kind words.
Unfortunately, I didn't have an alert dog, I so wish I had.
Grieving my lost career, my freedom and my whole way of life was a huge deal for me, and so very difficult to try to come to terms with Affy.
I'm having a short break until 9th Sept, but feel free to message.
Lucy2
@MyNameIsNicole @Lucy2
Thankyou for the interview, Nicole.❤ Love that shade of pink, soothing effect Haha!
Hey hey Lucy, more power to you my friend, it's quite difficult talking about one's experiences, and here you are doing it so brilliantly. I'm super proud of you always.❤
(Having come across the grief part here, and of our many interactions earlier in the grief and loss support forum, I just want you to know, you're not alone and it is indeed valid to grieve for a missing anything in life.)
Sending lots of love and hugs.❤
@Sunisshiningandsoareyou
You are my little ray of sunshine, always!🌷