Why I speak up about living with epilepsy | Sitawa Wafula
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- čas přidán 27. 08. 2024
- Once homebound by epilepsy, mental health advocate Sitawa Wafula found her strength in writing about it. Now, she advocates for others who are yet to find their voices, cutting through stigma and exclusion to talk about what it's like to live with the condition.
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I've dealt with a seizure condition for 33 years. The information I got from one neurologist was that I should be very careful who I told about this because, "people treat others very badly when they find out." Unfortunately, he was correct. So many people hate immediately, and never understand that it's not a choice but a difficulty. People somehow understand others with heart conditions though the sufferers have often acted in ways that made them ill. Fortunately, my condition is quite easy to deal with, but some individuals have their lives harmed horribly and can do nothing about it, are treated horribly and can do nothing about it. Try to understand before you make decisions about anyone.
Why would anyone have a bad opinion because you have it? Sorry if I'm rude, but I'd just like to know. My friend has it and I've never seen people show anything but empathy, when she's there and when she's not
Yeah I'm with _Nonono_ on this - how would anyone respond judgmentally about a "seizure condition"? You're not talking about something like tourette's are you?
William Peterson I feel you. I had similar experience with some people. However, most of the people around me have been supportive kind and empathic even after seeing my seizures.
William Peterson I can understand I live with epilepsy but people are more open to it. New Zealand has no knowledge about epilepsy not even gym's knew I had to teach them and not to judge those with epilepsy because it is cruelty. I been in music industry now I am making it known for others to feel empowered by me.
@@HiAdrian As an epileptic, I'm told often that "it's all in your head" or, that I'm being punished for being a 'sinner'. I can get somewhat verbally aggressive (depending on the severity of the seizure) and I've actually been punched in the face for yelling at someone to stop grabbing me. Epilepsy has several comorbidities, usually a variety of psychiatric and neurological, it's amazing how many people will use that against you.... it wasn't that long ago that people believed and treated us like we were demon possessed.
Some people are very empathetic, some are sympathetic, and some treat you like garbage. It varies from person to person. Thankfully, some people won't experience the negative judgements and actions, but some do and it can be discouraging.
I’m terrified by my condition. I don’t know how to talk about it with people or even think about it to myself.
Music and reading calms me down. Solidarity with all my brothers and sisters out there struggling with it. We are strong.
Hi, James. I’ve had epilepsy for over 20 years. It is absolutely terrifying. Unless you know someone who also has it, it’s difficult to discuss. That’s been my experience, anyway. I don’t know anyone else with it, so it’s been quite isolating.
Hope you’re doing well.
What I hate is that the only illnesses people talk about are cancer and heart disease and yes I know these are very bad but how many people do you here on a daily basis talk about epilepsy, almost none and probably none at all because they think it doesn't have that big effect but it does and they need to be talking about it as much as cancer or heart disease. ❤️
InstaBlaster
I know what you mean, and most don't know that there are different types of seizures and epilepsy. Everything this woman has said has happened to me. My bosses and associates at work are not very kind about it
wow I am an epileptic with Grand Mal seizures and this is so powerful! I grew up ashamed and not till recently have I started telling people and my job I have Epilepsy
The seizures I deal with started when I hit the back of my head/fused neck on a metal lock at work. The worst, I was having 30 a day, and going to work, completely out of it. My neurologist finally saw them during one of my appointments and he immediately added Dilantin to the Keppra I've been taking. Not to say there's no more problems, but I am finally stable.
Same here
My parents still don't want people to know I have epilepsy. :/
Thank you. You are strong. We are all strong, and not alone.
We Are Not Broken!!!
Elgy Bonica we are empowered by our epilepsy touch others lives for the best I am a life coach and musician but I'm so focused on inspiring others.
This was so difficult and emotional to listen too, had to pause so many times, so many flashbacks. Thank you for this talk.
I know that everyone's epilepsy journey is different, but it is possible to not only live with epilepsy but to overcome it and be successful, job holding, college graduating members of society. Don't quit and don't settle! Seizure free for 25 years!
Sherry Collins w/o meds?
Yes! I weaned myself off. Then I prayed and told God I considered myself healed and I hope he did too. LOL. Don't miss taking pills every day.
I'm glad you're seizure free and not dealing with it anymore, but for some people, we really don't have that much control. I've not given up, but I also don't shame myself for not controlling everything. We try, that's what's important, and we live the best we can.
@@socksandpi1264 absolutely. We are all on a different journey. Don't dare give up.
@@ScaryC71 your advice to people is "stop taking your meds and pray"? Are you being serious?
Thank you for speaking out. I have epilepsy that has been mostly under control for the last 12 years. Going from sometimes 10-12 seizures a day to a new medication,which made the first six months feel like a miracle. That was when I was almost sixty. I had had epilepsy for fifty years in various intensities. I am so please with the openness of people like Sitawa. Public reaction has gone from fear and prejudice to curiousity and conversation. To me that is as big of a leap as the strides in medication. As a children's book author, public speaking has been a big part of my life and our conversations with those asking me to speak always starts with, "There is a small possibility I will have a seizure while speaking. Are you comfortable with that?" "Here is what you may need to do if that happens." The acceptance has been amazing. For those who are sharing, thank you. I am trying to incorporated epilepsy into a time travel novel right now, as a reminder from other cultures that a seizure may be a gateway to something else....a what if type of story.
Great video. I myself am an epileptic and had a really tough time during my college final years. Have had seizures very often, although luckily for me I was surrounded by friends and family who were constantly there for me. Sitawa, I hope and pray you continue your journey for the epileptics. We can deal with anything life throws at us.
I also have epilepsy it's so hard talking about it with people I haven't had one in 10 months I'm so grateful for that 🙏
Sometimes I get depressed or just annoyed
Stay strong my warriors 💪 I know it's hard
Being someone with epilepsy, I love your story and your strength.
I’m trying to meet other people in the epileptic community here on CZcams 💜 thank you for sharing and supporting epilepsy awareness!
MyEpilepsyTeam is a great resource. I’ve found a lot of support there.
Am also a victim
I’m an epileptic! 💜🎗🧩
Iam an epileptic
Me,started when I was 10 now 41.destroyed my life.
As someone who’s had epilepsy since the age of 12, this really resonates with me. No one else in my life has seizures, and it feels good to see someone(especially someone who got diagnosed very young) sharing EXACTLY how I feel and what I think about every day. Thank you so much for this.
I am still on a journey with accepting my epilepsy. It so comforting to know that their others that relate to the same struggles I deal with.
Took three years to accept that I had epilepsy, and there wasn't any changing that. I could either do what I needed to do and try to live the best I could, or keep denying it and hope things wouldn't get worse. I finally chose the first. I hope you've finished accepting it, and have started finding healthy coping ways, and do the best you can. Sending good luck your way.
This women should be so proud of herself she put me into tears 😢 I could watch this again and again and the emotions will pour out from inside of me everytime because I can relate so much to what has been said.🙏🏻🙌
It is difficult to discuss the problems we face as epileptics to others, as they like may not appreciate the so-called "pity party". People fail to realize that our life is mostly dictated by our epilepsy, as we are constantly thinking of maintaining our health. We won't take the extra job if it means that our sleep will be lessened, we won't go to that EDM concert we long to go to, as we know there will be strobe lights. If we can't drive due to seizures, our job choices lessen significantly...etc, etc, etc.
It isn't like it is something we are told we have, and we get better. We learn to cope and to live with it. I don't think any epileptic can say they would be the same person if epilepsy were not a part of them. Whether they would have a better or worse life, who knows; but epilepsy definitely dictates choices we make.
so well documented thank you, you have hit every point so well.
I'm epileptic and this is so powerful thank you.
Exactly!!! Same reason I speak up about living with PCOS! Love you girl!!!!
You are officially my new hero, keep the good work going.
Much love from Ireland. I have epilepsy also, your speech gives me so much strength to stay the course and live a happy life no matter our obstacles.
Funny that cause I just got out of the hospital bc of my epilepsy & now I'm struggling with extreme anxiety & panic attacks. All the things I can't do because of this illness. I literally wouldn't wish this upon my worst enemy.
Alyssa
god bless you
Alyssa I understand completely I had a seizure earlier this month because of my epilepsy and am now having constant anxiety because I can't drive and totalled my car from the seizure. I'm sorry this happened to you, just know you are not a lone. let me know if you need someone to talk to Im here!
Alyssa i was diagnosed with epilepsy when i was 4 and i have had grand mal seizures all the way up to 10, i am one of the lucky ones who have grown out of epilepsy (now 15). But because of the seizures (and other stuff) i have been diagnosed with severe anxiety and panic attacks ect. Im telling you this so you know you are not alone, and you're not weird, and i hope one day the panic attacks will go away and the epilepsy too. Everything will be ok, trust me.
I would wish it on people i hate
Alyssa, I can totally understand you.
I had being diagnosed with epilepsy when I was 10 but I am really lucky to say that I had just four seizure in my whole life (now I'm 27). Last year, after 12 years without seizures (but I was taking medicines, oc) I had two seizures in a day. Two "gran mal" seizure. After that day my life changed. I suffered for months from panic attacks and anxiety. My parents became way too overprotective and they never left me alone for one second. I couldn't even drive (worst thing ever because you depend completely on others)!
It was terrible for me. I had lost my independence ad I felt like I was suffocating.
But then my neurologist suggested me to go to therapy.
And things started to get better.
So go to therapy (it works, trust me!), speak with the ones you love the most, speak about your illness even with strangers with a smile, make jokes about epilepsy (but just if you feel it) and never, ever feel ashamed to tell your stories. It raises awareness, the most important thing for us! 💪🏼
Thank you for sharing your story. I'm studying to be an EEG technician and am working on a presentation about epilepsy for my anatomy and physiology class. I wanted to show how disruptive epilepsy could be but I was having trouble finding a video that put it really well. Until I ran onto this one. I really appreciate you sharing your experience. As someone who will be working with people who have epilepsy, you have really helped me understand what it means on the human level and from the patient's perspective. Keep doing what you are doing!
Please, keep that human level. It's disparaging to be criticized all the time by medical professionals for "not doing enough" when you're literally trying to do what you can. If I met someone kind during the beginning of my dance with epilepsy, it would have made a world of difference.
I've dealt with epilepsy for over 20 years. Seizures have always been a problem for me, and I rarely tell anyone about them. I just feel like if I do it's more a cry for attention than anything else. But I've noticed when I do talk about them it can be extremely uplifting.
Yes it is uplifting i used to do just like you and i try to hide whenever i felt like im having seizures but my reason was that my family always thought i had the devil in me and it really felt bad to hear that
You are such a superstar for this bravery Sitawa.
Thank You for sharing your journey with epilepsy. It's people like yourself that have built a strong epileptic community and have made it a little less traumatic for us 💜.
You are very very brave to be able to stand up and talk like this. You are changing the world for someone else with epilepsy.
I have also been fired for having epilepsy so I understand that pain. Good luck to you and thank you for all that you do.
You are a beautiful example of what our generation to aspire to be!
Epilepsy is a condition that medication can be a life changer, especially among the young and poor. Finding steady employment and fighting stigmas are real problems.
Yeah I was rejected on a Tafe course because they thought they couldn't find me a placement with my epilepsy. 1 in 20-26, every classroom is going to have someone.
Real life troubles of epileptic
This broke my heart and had me in tears.
This hit home to much and was just what I needed. Being fired for something I can’t control and constantly being told I’m not good enough knowing I’m capable and accomplish so much against my fight everyday takes a spiritual beating. So to my you I want to thank you for speaking your truth because it honesty is great to not know I’m the outcast I’ve always been in life to people.
I suffer from Clonic seizures, thanks so much for the talk.
Brilliant, you have so much courage. My heart reaches out to you. More power to you for keeping the conversations going.
Nice video. I am glad you were able to talk about this important matter. My uncle passed away from suffering from an epileptic seizure 5 years ago. RIP Marian.
I have lived with epilepsy for 10 years in was diagnosed when I was 5 years old and my life was hard because of epilepsy I was bullied and had a hard time making friends when I was in 6th grade one of my classmates mocked me for having a s were I sure she pretended to seize and asked who am I that broke my heart but it has gotten better but people dont need to make fun of someone for having epilepsy because people with epilepsy have a hard life
Most people do not know what it how struggling it is living with epilepsy. It is more than seizures.
I love the fact that u have the strength to talk about it that's very brave of u I'm also dealing
With size condition, I've had it for thirty years, not many people understand the condition, I don't tell many people about.
I'm with you right now. My seizures have cost me everything.
I understand.
No matter how you feel, get up and never give up.
I had a seizure yesterday. Everyone was worried me.
my room's lock was taken away. But I got it back from the other door. I'm not as good at solving problems as you are, but I have a lot of tricks. I was quite surprised this time when I saw the bloody floor and the pillow full of blood. I'm glad to hear that' My teeth didn't fall out like last time. I guess I've improved a lot
My focal seizures are horrible, but the worst part of my epilepsy is my memory loss. I practiced medicine for 20 years after my diagnosis, but the memory loss made the practice dissolve. It's hard to keep the mind up, but it is what it is. Life must go on to the best of your ability........
ur journey makes good when u accepted this type of problems.never ever give up.because u r bigger than ur problems.stay strong.
I was in 7th grade (12 or 13 years old) , but I got picked on in school for having them . That's what makes it hard for me to talk about because it seem like someone is just waiting to laugh.. I had people stop talking to me completely when I told them , and I'm now 21. It's getting easier but sometimes I never have anyone to speak to about them
I hope that you are feeling better💜
After having epilepsy I felt more on guard or anxious it probably would’ve been some fights pressure applied back to those who thought it was funny 😇
I love you for being that strong!❤
I’ve have just been diagnosed and I am struggling but this has given me hope
I feel that situation because my brother suffering he can't talk now since three yrs I am praying to God he will talk
I noticed while logging down my seizures that there were similarities. At night with cloudy weather & fog. The atmosphere has electricity in it and we are the ones who suffer as a result to a seizure.
dang this is powerful
Wow this woman is a strong woman. I don't know anyone who is talking to so many strange People about thair Epilepsie because this is not easy to have Epilepsie I know that because my boyfriend has strong Epilepsie.
Thank you so much for all that you do. You are an incredible inspiration to me on my own epilepsy journey.
Since 25 yrs old and the memories are like recently
WHY ME?
A question I asked myself many times, and still am.
In fact, I got my epilepsy through a vaccination.
I've experienced seizures since 2017. I had a seizure one night early hours while sleep and was shaking and slavering not a response to what was being said. When I had seizures and was told a few hours later I had a seizure I would be confused. The EEG in late 2020 had shown I have scar tissue on my brain which explains why with my absence seizures, they have been going on since diagnosis and started February 2021, I go stiff. Now my experience of absence seizures is not what people think I have had my longest one be an hour. I would go stiff remain silent. Not a response verbally or change in body language. Whenever I come out of them I sound confused my voice is calm. I immediately have a drink of juice to ensure it doesn't continue. My absence seizures mainly started in 2021.
I found out I had epilepsy 7 years ago. The seizures just started back at 25. Have to go back to neurologist. Looking for others with the same condition
It is sometimes depressing 😔but still I thought that one day I will travel alone the day i will start to earn. It's really hard to memorize when you take a dozen of medicine's in Epilepsy 😢no one knows it's so hard to deal with. But I will say to everyone that don't give up do whatever you like it doesn't matter even if it take years to do so,Do everything whatever you like. Make yourself strong and think positive everything will be fine one day.
I was too fired for having seizures at work. Worked hard and always gave my 100%
hope youre ok brother
I'm okay, thank you for reaching out.@@jimimased1894
That's life your only worth money to them
@@Vito-oo4my profits over people 🤦♂️
I have epilepsy too man it's really really hard, profits over people is the new America never give a hundred percent of u too a job I've done many times don't appreciate u just use u and throw u away nowadays it's basically predator prey it's sad people are losing hope out here.
I've had epilepsy my whole life, had bad grand mals when i was a child, then it went away from about the age of 13 and they returned when I was studying in college. Nothing but minimum wage jobs is what I can find, as almost no one wants to hire me period. It's embarrassing having epilepsy, it's hard to make friends or relationships, living at my fathers as I'm too afraid to live alone, I get different partial seizures everyday, haven't been allowed to drive for 14 years. I've been beaten by the police at a friends during a seizure, died and came back to life as well, and was fired from a job 10 years ago after a seizure list goes on...
Well done...
It is a heavy burden but; You are, I am, We are, strong enough to carry it all the way.
It has taught me a lot about myself and life.
I truly appreciate the love and support that surrounds me, and I hope you, whoever you are, wherever you are, are also blessed with this similar loving energy. ✌🏼
Thankyou for this.. just thankyou
YES I HAVE IT ALSO.
But never give up.
Ah, beautiful soul. I am living a parallel life to yours. Stay strong;
Thank you for your kind words. Epilepsy is treated as a stigma in India too. I was firedred from my job too, because I'm epileptic. But I can't do anything much because of paralysis.
Pls search for Samman Mumbai
Wow,i need to meet you in person am also a victim of seizures more than 5yrs
I'm going through depression right now I had a seizure 2 days ago and hit my face hard .
Thank you so much for this! Thank you! Thank you! Thank you!
I respect your courage and you are very strong also not alone I also live with epilepsy and you are right it has a separate life resources of it 's own.
Im also an epilepsy patient,suffering from seizures also im an mom of 2 babies worrying a lot that how my future would be,im an indian village girl suffering alot from many comments of people.
I can relate to her I been there with epilepsy I question myself why me to full acceptance.
You are not alone ♥️
An inspiration to all to see someone in her condition SIEZE the moment by doing this talk.
Thank you! This was powerful!
Amazing talk, thank you! 💜👏
Great! Thank you!
I also struggle with this viscious illness
I have been suffer 5 years from epilepsy.
When I go outside people staring me weirdly.😞😞
I don't have any friends because of epilepsy. They don't want to friend with me
I always cry at home why this epilepsy can't be cure😭😭😭
Search for Samman Mumbai
Thank you ❤❤❤
😭😭😭😭😭😭😭😭same way i feel why me o my God help us it's soo hard 🙏
you are so strong and you inspire me
She Was Amazing. Well Said
I'm 37year old a mother of three ata Mimi nilipatikana na hio nikaajijwa kazi,
We will fight on
Very moving video and educative to me
Thank you
very powerful speech 👍
Happy to her, sad to me... Since 2009 I'm epileptic, I begin to lose all hope.
Matt Malandraz We are together, be strong ♥️ if u ever want to speak with someone I am here for u. Please don’t lose hope
@@mariafernandapatinohernand1349 the same for you ☺️. If you need to talk or else I'm here for you. Just express yourself about your problem but do not be afraid.
Oh look! A talk by a black woman that is not instantly hated! I wonder why that might be…
Great speech btw.
Thankyou sister for sharing your story ! I also want to share my story ,in 2004 I was diagnosis by seizure.And it continuously going for 4-5years . After taking medication it is mostly controlled.But I still asked myself why it happened with me ?
We should all get together. Who ever has epilepsy it fucking sucks.
Everyone has their struggle days, face it !!!
U are my inspiration sister ❤️
High humidity and low atmospheric pressure is the reason why people get seizures! I found out because my previous seizure was during when the hurricane and I googled it and found out. That's why places with high humidity such as The UK and Pakistan have the highest percentage of Epileptics.
Great one.
Is there any Whatsapp or insta group of people with epilepsy?
I want to join the community!
It started the last year of high school for me as well. My aunt has it, another one was miraculously healed, my own mother had some seizures when she was 14, but it eventually stopped. I didn't understand why it wouldn't stop for me as well. Until now, I still don't know the sources of my seizures. I haven't had one in a year because of medicine. But that medicine is bringing some other medical issues... But I'm too scared to stop.
It isn't uncommon for childhood/youth epilepsy to go away. The brain tries to heal itself after all.
I'm in da same boat you in. I haven't had a seizure in bout a year I wanna get off of it but I'm kinda scared of what gon happen wen I stop taking it..
Im praying for your healing💜
I wish there was a cure
hello, there was a young male who sat with a group at my high school (i graduated ) he has tonic clonic seizures which happen twice a month typicily occur on a bus at a spicific location. He refused to take his medication because of the severe side-effects which, he later discribed as depression and lack of any sort of appitite.
i did every i could to convince him to take his meds but was unsuccesful. I question is what more could i have done?
Nothing. It's his responsibility to take care of himself not you. Your concern may have come from a good place but some people would view it as intruding and even rude. If you feel like his life was in actual danger you could have reported it but medication does have harmful side affects. No one should be forced to take something they don't want to no matter how unreasonable it may seem.
Yeah........same to me with seizures
I want the link of this app ,please😃
How can I contact you I need help
I have seizures:( please help any useful information about jobs/programs and money
😭🙏🙏❤
Try Ketogenic diet...
Get a good neurologist. Get a second opinion if you need one. There are all different types of epilepsy and yes people do grow out of it. Epilepsy support groups too all over the place anymore. People can live full and happy and successful lives and have positive healthy relationships (positive attracts positive). I would always follow medical advice and never wean self off any such medication on a whim to hope a prayer to God would help me. Neurologist know much more than the average person does when it comes to epilepsy.