The Hell of Chronic Illness | Sita Gaia | TEDxStanleyPark

The Hell of Chronic Illness | Sita Gaia | TEDxStanleyPark


Translator: Katie Poole
Reviewer: Peter van de Ven Did you know that one in three individuals suffers from at least
one chronic health issue? If that’s not you, then it’s either the person
in the seat to your left or your right. A chronic illness is an illness that persists
for longer than three months, and there is no cure
through vaccinations or medications. You know plenty
of medical chronic illnesses: diabetes, heart disease, arthritis, fibromyalgia, epilepsy. It goes on and on and on. I am an epileptic. Uncontrollable, intractable seizures. I might stiffen up and fall to the ground
(Snaps fingers) like that. Or I might daydream and stare really hard, and if you’re in my line of focus, you might think
I’m giving you a good look. (Chuckling) That’s not the case. (Chuckles) I might also do some weird,
repetitive activities such as picking things up
and putting them into a bag. It makes no sense, but that’s the seizure. I want you to sit here and take it in, feel it, and in the end, act
in a useful and helpful way. I have fallen multiple times
on concrete and cement, which have resulted in concussions. I have also burned
the entire top half of my torso with hot tea. This resulted in four months
of bandage-changing and on morphine. Two years later,
and my burn is still healing. Finally, I needed a root canal and a cap because I fell face-forward on brick. I’m not going to tell you
which tooth it is, though. (Chuckling) I’m not the only one
who’s in physical jeopardy. I was hanging out
with my friend Jordan one time, and he’s a type 1 diabetic. Thanks to my mom, she recognized that his blood sugars
were painfully low. We called a paramedic, and if we hadn’t, he was this close from slipping
into a diabetic coma. I also have two friends
who’ve been hit by cars in the last year. One of them has a visual impairment, and the other one uses a scooter
because of an acquired brain injury. If I have a large amount of seizures
in a short period of time, I lose a lot of short-term memory. This sucks, (Chuckling) especially if I’m trying to
achieve something, and it can also be embarrassing if I’m trying to have a
conversation with someone. I don’t know where I started
and they ended. Seniors moment much?
I think I’m starting early. I also feel so fatigued. I might need to sleep
for three to four days. This fatigue is on top of
the medication that I take. You know, you’ve seen
the ads for medication. The side effects are like this long. It’s insane! With chronic illness,
depending on your chronic illness, you might have to say goodbye
to a lot of things. You have heart disease? Kiss goodbye hiking in the mountains
with your friends. With chronic illness,
it is a world of loss. Now that I have painted
a picture for you of what it’s like to experience
chronic illness on a physical level, let me paint for you a picture
of what it’s like to live with mental health issues
and emotional issues. I have been plagued by anxiety, and I did not leave my house
for an entire week. That’s a long time. I have also fallen into a pit
of despair and depression, not knowing where I was going to go
or where I was going to end up, and I felt like a total failure. I’ve seen this among my other friends
with chronic illness too. So if you see someone
who is isolating themselves, I tell you, reach out a hand, talk to them. Talking to them shows them that you care. Help in whichever way you can. On top of all of this,
the icing on the cake, is how people treat you
based on your chronic illness. For my age, the challenges
of dating loom large. I’m often very up-front about my epilepsy when I’m meeting someone
for the first time. They’re generally pretty cool about it. “You’ve got epilepsy? No problem.” “Seizures? Seen them in the movies.” But, sometimes people can be unkind. I was on a date one time,
and it seemed to be going pretty well. We were in a restaurant
making casual conversation, and we decided to walk down by the water. We weren’t really talking
about anything in particular, and we got to a crosswalk. We got to the crosswalk,
and as we were crossing, boom! I had a seizure and fell flat on my face. Now, I had taught this person
about the appropriate seizure first aid. The first thing I told him – be calm. So when I came out of the seizure
two minutes later, I pulled myself up, back on my feet. “I’m here, it’s okay.” He was calm, but he was so full of fear. I could feel it. So I was getting my head
back together, and he said to me, “Well, I don’t see
a third date happening here.” Excuse me?! I would’ve expected you to at least
text me that after we said goodbye! (Laughter) (Applause) It would have been
a little bit more tactful. So in addition to
acceptance of other people, you need to come to terms
with your own chronic illness. Acceptance is the big job
of the chronically ill. No, it doesn’t happen overnight. It can take years and even a lifetime. Acceptance brings up ideas,
such as, what does this mean for me? Will I be able to find a partner? Will I have kids? Will I be able to raise these kids? Will I find a job
or live in constant poverty? These thoughts
can be so overwhelming, and it takes a lot out of you. Also, when we are children,
we are told, “Dream big!” “What do you want to do
when you’re an adult?” I have known that I have wanted to be
a social worker since the age of ten. I don’t know about you,
but for me, that’s a long time. I’m a registered social worker, but I don’t know if I will be able to do
what I want to do in my line of practice. I also have a good friend, Vanessa,
who used to be a competitive dancer. Then she was struck with arthritis. She had to completely alter her life path because of a diagnosis that had no cure. How would you feel
if you had to give up your dream? So I’ve thrown a lot at you
with regards to chronic illness and what it’s like to live with one and all of the things
that you have to go through, and you might be a little bit
overwhelmed at this point, but don’t worry – that’s why I’m here. So my three-point plan is this – super-easy; you can follow it. First of all, accept that there is
no such thing as a norm. Everybody is different with regards to mental health,
ability, and well-being. Accept that, and act accordingly. Also, you may be struck down
with a chronic illness at some point in your life too. My second plan to action
is to have empathy. You have no idea what people
are going through on a day-to-day basis. If you do, though,
reach out to that person. Tell them, “Hey, I’m here for you,
and I’m willing to do whatever I can.” My final call to action is –
consider this: Maybe a person’s chronic illness
isn’t their problem, but your problem, and the problem of society at large. If we had a more inclusive paradigm that included people with chronic illness, we might be able to pull people
out of the hell that is chronic illness. (Applause) (Cheers)

100 thoughts on “The Hell of Chronic Illness | Sita Gaia | TEDxStanleyPark”

  1. I love your sharing there. I also had chronic issues. Taking b12 has saved my life. Look up Diagnosing and treating vitamin b 12 deficiency on u tube. Also
    BBC inside out vitamin b 12 deficiency. Please watch these. Buy Could it be B 12 by Sally Pacholok. Look up how low b 12 effects all the symtoms you mentioned. God bless! Please try b 12

  2. Great job! I've read your blog quite a few times but just happened to stumble in this while browsing YouTube. I have epilepsy too but it's not intractable. I still understand the medication side effects and anxiety. Keep on keep in' on!

  3. This so good! I have Crohn's Disease and I was physically isolated by my illness for 7 years. It's so hard to get over. This helps so much, because so many people don't know the challenges you face.

  4. It is a fantastic video, Sita ! It is very much important for people with chronic illness to come out of their ignorance; to understand what they have and act accordingly. Unless and until people are ignorant, this hell will appear again and again.

  5. giving up your dream…
    very tough when your amidst the dream and THEN illness/injury strikes.
    Your right! there is no NORMAL! We are all different. thank you for speaking out, you did amazing!

  6. tu so much was feeling alone in this situation and we share not sane illness but fear. dates are same way. tu

  7. I have chronic urticaria (hives) and I don't know whether I am ever able to have children because of my medication. I personally love it when people ask questions, if you don't understand something I'd rather have you ask than assume something. I probably will always have urticaria and because of this I had to give up dancing and sports and now I have to follow a specific diet without histamine. Thank you Sita for shining some light on this topic x

  8. Hi. We were given your TED Talk for Uni, as part of Bachelor of Nursing. Thank you for sharing. I loved your talk. You are tough and smart. Best wishes always.

  9. as a child I was in gymnastics and karate and enjoyed weightlifting on dancing, as an adult I lie in bed trying to get enough energy to just get up and eat something … my entire life have has changed and her life has become going to doctors. I wish more people could understand what it is like and yet I wouldn't wish for anyone else ever to experience something like this. thank you for speaking out on behalf of those of us who can't even figure out how you were actually standing for a full 13 minutes

  10. I just accidently clicked your video – and I listened to your speech, excellent highly inspiring – Thank you appreciate your courage. I have a brother who is going through the same chronic health issues

  11. thanks @sita gaia, you're not alone in the war/uncertainty for a normal life, and i've burnt/hurt myself a few times making food too lol. micro dosing might help . if the stat is true, it is odd given how many are either going to hit or be affected by chronic illness that training isn't part of everyday curriculum, it's far from easy when you're given one of these terms you don't understand, or worse not given any useful diagnosis on what exactly you're supposed to do.

  12. You are an amazing, beautiful soul for telling this to the world, and thus, opening their eyes!
    I have chronic urinary discomfort (on the verge of chronic urinary pain), at times bladder pain, some homeopathy – Apis Mellifica helps a bit, that is all.
    But I have colitis ulcerosa – inflammatory bowel disease, and I have to go to the toilet a lot because of it.
    I have been having these chronic stuff since 2010.

    Unfortunately, because of them I gotta take some psychiatric meds because they make me isolated, because nobody likes farting people with indigestion, and I gotta prepare how, when, where, why I should go, eat etc. For because of lots of foods I have to go to toilet a lot to do the big thing (pardon this sentence), and even meds for various illnesses only alleviate pains and heartbreak of physical and mental pain a bit.

    I can speak as if I were multiple characters, altering my voice, and not in my native language, and it is sounding convincing, also online selling poems. That' s what I can do.
    Right now I' m not sure if I will be able to go to city 25 mins away by bus, train, because sometimes I get to go 8 times for toilet a day for the big thing, and I' m up for 10 hours a day.

    And when I was healthy, could do anything, even waking up at 4 am, and getting home at 8 pm from college, doing a major dealing with foreign language, taught in it.

    And it changed in 2 years. Now, after 5 years it is almost unbearable.
    Sometimes I do not know what is less worse: to take meds or not.

    Lots of doctors became frustrated for they could not heal it, and sent me away, or giving me same, most modern meds available today.

    I have tried homeopathy, holistic, various diets, herbal stuff, but they all can make it only more bearable a bit.
    How I look like in real life? Well, tall, looking healthy, and people do not take these illnesses seriously because they are invisible.

    Per se, they are on pair with depression, mental illness, all chronic pains and illnesses.
    If you take morphine-based or other painkillers you are viewed as an addict. Anyway, you keep whining, you fake it, even SOS Hotline telling you go to doctor, go to hospital, change lifestyle, be positive, endure. IT is not like that: it is a battle every day, you can never know whether you will be able to go for a walk or not, perform simple tasks, travel, meet with anyone. Future is grimdark because you can only do things at home, and even simple tasks are very painful. You cannot progress, and nobody understands you, except those with whom are sharing chronic illnesses.

  13. I am also an epileptic..had fallen multiple times on floor. I am put on keppra (levitricitium) and vitamin B12. I had fired from my last job due to my epilepsy. what makes me scare that falling at unknown place where no one knows me? and trys their first aid like taking onion/boot near my nose?
    I'm from India ..and here epilepsy is still unknown to large population..they are heavily depend on traditional medication.

    I know how it is difficult to live with epilepsy? how I have completed my graduation only I know.

  14. I loved your talk, and your conclusion that the biggest problem is not our disease, but a larger cultural paradigm that cannot accept people with chronic illness. I have type 1 diabetes, diabetic neuropathy, fibromyalgia, irritable bowel syndrome, arthritis, TMJ, and much more. I am a social worker. I am lucky that I can work right now, but this may not last. Thank you for telling your dating story. I have had family members leave me alone during a severe medical emergency, or even cuss me out for not being able to drive them while I am having a low blood sugar. No one in my family believes that I have fibromyalgia or acknowledges it any way. I have found fibromyalgia to be more debilitating than T1 diabetes. I had a husband who thought when I had a low blood sugar, I was faking. I have a curtain on my cubicle at work, which I close for privacy when I am stabbing needles into my stomach or making certain changes with my insulin pump and continuous glucose monitor. The young baby workers in the office snicker when they walk by. I would agree with you completely that chronic illness is not so much our problem, as THEIR problem, the inability of others to include everyone.
    The greatest insult of all is demonstrated in some of the comments below. These are the people who insist that we could fix our illness with their favorite herbal remedy, white light, vitamins, or some other simple solution that we must be too dumb to utilize. These people hold on to these ideas, to protect them from their fear, and the reality, that chronic illness could happen to them. The truth is, white light can fix us. Because, in that light, I find that I am perfect, just the way I am.
    This is a fad filled world with misguided new age ideas and people who believe we can control every aspect of our reality, and especially, our health. This makes the world an even harsher place, for those of us who live with seizures and similar inconveniences. Your message is absolutely wonderful. Bravo.

  15. Actually, there are chronic illnesses that are curable, just Conventional Medicine is not advanced enough to detect it at least and often no clue to heal it…because they generally expect quick drug or surgery healing….but trust me you can have and infection slowly spreading, enguplphing your body, yet you are on your own! I happen to figure out from desperation for pain relief that my body is actually filled with infection that slowly wrapped, strangling my ability to function, actual visibly obvious infection, but still treated just as she describes! It is SO SCARY, TERRIFYING!

  16. Thank you! I've been wishing I could give an educated & insightful talk about chronic illness through TED since my chronic illness forced me to drop out of school 4 years ago. I was on the fast-track to academic research. I was planning for graduate school, etc. But I've had to give this up. I faced ridiculously inadequate university disability program(s) & general ignorance about chronic, especially invisible, illnesses. Now I am on a newly formed advocacy committee at UCD to mitigate these problems. It takes a lot for someone like Sita or me to speak out about living with chronic illness because of the general challenges of day-to-day life, but we are the best prepared to explain the full impact of chronic illness.

  17. Chronic illness = more than 3 months… …4.5 years checking in and growing. I hope for better circumstances for us all chronic illness is a waste of life.

  18. I love this talk. I have lived with chronic trigemminal neuralgia for 39 years. This girl makes a lot of good points. Acceptance of my condition has been the hardest thing for me. The other is the disdain people can treat you with including family. Ignorance breeds contempt. We must be more compassionate and inclusive of those with disabilities as this girl has pointed out. Thankyou Sita.

  19. People don’t care about the chronically ill unless they can take advantage of them in some way e.g. a profiting healthcare industry. Superficial sympathy is all there is and that’s more about the fortunate feeling morally good about themselves than it is the wellbeing of the unfortunate. This has been my experience all the way through.

  20. I have an "invisible" chronic illness 🙁 People think I am lying about being in pain all the time. Thanks for talking about it.

  21. I really understand and can empathize! I never understood chronic illness until I was struck with one…. it’s HARD!

  22. Thank you for making this video. I have a chronic illness that's debilitating at times. People don't understand what it's like. It's silent and many times we feel like we are suffering alone. ❤❤❤ Thanks for the video.

  23. You are an exceptional human. Thank you for having the courage to do this talk! I'm with a debilitating chronic skin ailment & a misaligned painful lower back. I have struggled with a lot of physical, mental and emotional challenges since I was a little girl. I'm 35 now. Thanks to homeopathy and holistic health care, things have gotten a lot better for me now.I am grateful for a lot of things in my life. However, when I am in physical pain, I have phases where I feel extremely lost and isolated….I needed to hear this today. Thanks Sita.

  24. After 4 hip surgeries, one neck surgery and a 5th and 6th hip replacement from Systemic Cobalt Poisoning from Metal on Metal hip implements. The ones in me have been recalled and the ortho ran when I said cobaltism. Systemic Cobalt Poisoning from Metal on Metal hip implements have me chronically ill with ME/CFS. Family and friends say, naw, you're not sick.

  25. Unless u live it, u wont comprehend it. I used to think the same. I couldnt see how someone feels pain all the time. Had to be a copout. Now, after injury, I too live n constant, nonstop pain. It is horrible. I envy those that live pain free.

  26. I know what it feels like to be epileptic it hindering hurts your self-esteem having a job is challenging recently I injured myself.

  27. Hey if anyone's interested I have reacently started a channel.focusing mostly on undiagnosed chronic illness support as not much is out there and everyone that's going threw chronic illness goes threw it at least once. I create vlogs and videos about my un/dignosed chronic illness journey and on various topics like self love , LGBT+, disability, chronic illness, atheism ,mental health ,autism and what ever i decided to talk about hope to see u there!

  28. Chronic illness sucks. Especially when it’s “invisible”. Accepting my “new normal” is slow progress but getting there.

  29. I’ve suffered from chronic illnesses ever since I was 20. It breaks my heart that people can’t understand what I’m going through. I wish this world could become a happier place full of positive people.

  30. Having a chronic illness is no joke it takes over your life i have had fibromyalgia and a lower back injury for more than twenty years. And its god that is keeping on this earth. I pray to god to heal everyone who is fighting with a illness thats not anyones fault god be with you your a strong soul god is with you your so brave to speak out let everyone know.what is happening awareness is postive action very informative. Your greagreat like your sense of humour

  31. You are so brave for doing this talk. .but we live in an age where it needs to be done. ..people have to speak loudly to be heard. ..
    I have fybromyalgia and I don't even try to explain anymore what is like to live day to day with it. ..Not even to my husband or family
    I also know what it's like to stay in the house for days on end. ..I do. ..It's my safe spot and I can stay in for weeks. .. Once again thank you for your in encouraging words and I hope that people realize that we are all susceptible to any illness at any time in our lives. .so be kind to one another. ..thats the answer

  32. I have pcos.. N all my symptoms including facial hair n beard makes it very difficult for me to go in public most of the days.. Can someone help me?

  33. Sita that was amazing….your brought humor and life to a difficult subject….always assume we are all secretly fighting out our own battles…you are a remarkable and amazing positive voice….well done

  34. No ACCEPTANCE I DEMAND a new body.. Btw i have a chronic illness for almost 8years now and my body gets more damage day by day. I can be in pain for 1/3 months.. Vomiting, stomic pain, not able to walk and not being able to eat, and the worst part is that I need help when I'm in that state, but everyone in my family has their own life.. I'm always stuck by my self unhappy. I really hate my life. And I don't wanna be here..

  35. I have a few chronic ilnesses:
    Asperger's syndrome, Tourette's syndrome, Epilepsy (only Simple Partial seizures and occasionally myoclonic) And Severe Anxiety and Severe OCD. All diagnosed. I'm 13.

  36. She seems like those anime characters who never open the eyes but can still see better than anyone.
    (not the blind one, the one like Brock who should be able to see a thing)

  37. My mother has a terminal illness, never mind chronic. Her life has gone and mine is not the same either. We have both lost so much. Cherish what you have because you don't know what is around the corner.

  38. I wish they would make advancements in treating nerve-related pain. But then again i guess we ought to be grateful for the (many side-effects-inducing) pills we have now to at least keep symptoms to a level where we can function. Sometimes at least.

  39. Well done lass , I am an 64 year old male got my first seizure at 18, still on meds after all those years , been married and seperated have 3 wonderful offspring , still havent accepted this handicap

  40. I use to be an athlete all my life, but at age 47 I hurt my back, now it's been 12 years, and I am constantly managing pain, by which I cannot work, or do the exercises or hobbies I did before. I feel trapped in a cage, and it grows very weary, year after year, month after month. Loss of sense of self is a biggie, by which I struggle with now.

  41. This is a great talk I have been living with physical and mental issues and life is one day at a time thanks for sharing

  42. I have been sick for 7 years .used to be healthy hard-working never took a Tylenol or Percocet except for five major surgeries but as soon as I recuperated I stopped and sometimes I even threw them out .it wasn't until seven years ago wgen I got fibromyalgia arthritis neuropathy intractable pain radiculopathy sciatica and I have five herniated discs n poss ms I am going for testing in May
    I have needed surgery for 10 years now but I was advised against it because it's 50-50 and can paralyze me.
    I am mostly bedridden I live in chronic pain day and night barely sleep an hour at a time. I am no longer functionable and now with the new laws I don't know how I'm going to live because I wasn't getting too much medication like other people were but what I was getting was helping me at least indure about 50% of the pain and get through the pain where I wasn't crying and praying to God to take my life …now that's changed. this is a crime against humanity. against our human rights. these are real diseases.. I used to be a very judgemental person of opioids until I got sick myself.. we should not suffer because of what junkies choose to abuse nor healthy politicians making decisions for us because they're anti opioid …they do not understand or care that this is a treatment for us and the only one that works ..it's Criminal …doctors can no longer treat their patients and politicians playing doctor..

  43. I have been diagnosed with neurosarcoidosis 8 years ago, I have been all over the states to every kind of specialist and natural path dr you can think of. Moriphine and every other pharmaceutical you can think of. Still have a eye headache every day, brain fog, anxiety, depression ect ect. No change. They basically gave up on me. On warm sunny days I pray for rain. The sweet chatter of my kiddos overwhelmes me and makes me physically ill. People say “you look fine”. That makes me so pissed off! So I got fed up and quit all the pills. Then came alcoholism. That’s a dead end road so I have been sober now for 3 months. I don’t want to live like this. Marijuana helps a little bit but it is not socially acceptable. My sponsor says no mind altering chemicals. Wile he smokes and drinks coffee like a fish. People just don’t understand.

  44. Thank you for revealing your life. You have much courage. I have chronic pain syndrome and most people don't believe I have the amount of pain I do. By the grace of God I've been able to not let it destroy my life. I have limits that most people don't understand. Why can't I walk as fast as they are when they are in the grocery store. Why can't I just exercise more and eat right. I know someone who has fibromyalgia they say and they're just fine. Judgements have no place in this world. Somehow some way I pray to God that someday everyone will be honored for the individual that they are and they will be valued for who they are in the creatious fight of daily pain

  45. Why god chooses us to feel pain chronic illness and we can't live like others living their lives

  46. I’m glad people are talking about chronic illnesses especially ‘invisible’ ones. I have scoliosis and POTS. I’m 15 and am in schools still. No one believes me that I am in pain because of my back or my heart rate, blood pressure, fatigue, etc. My teachers hardly ever understand or even believe me until I’ve passed out because my blood pressure drops or need to go to the nurse because my heart rate was at 206 bpm. And sometimes I voice about my physical problems and people don’t get that something that seems like an inconvenience for them could land me in the hospital. Like a nose bleed. Last time I got a nose bleed I was actually hospitalized and when I came back to school people made fun of me for being hospitalized for a nose bleed. Like it’s not my fault my blood wasn’t clotting and I was losing consciousness because of my lack of blood. I just wish people understood and wouldn’t judge me when I need to sit down when the rest of my class runs or that I can’t always sit in those hard chairs. I just wish people were more accommodating to what I need to feel a little more ‘normal’

  47. Sita, your TEDx just popped into my recommended videos, and I'm so glad it did! I was diagnosed with IP (also known as Intractable Pain) over 10 years ago. All of my pain stems from my back. I have no answers as to what happened to me. No one can help me. I can only take my meds to manage my symptoms. Because of this one chronic illness, I had the ability to become a mother ripped away from me. Even this many years in, I'm still not at that acceptance level yet, and I'm not sure I'll ever get there.

  48. my baby sis has it and i can see that she is developing depression since shes had it.. i dont know what to do i just want to help her.. i feel helpless😭😭😭😭 someone help me pleasee. i also have anxiety so i overthink everything that is goin on in my mind with my sis illness

  49. i am a doctor, and i feel pain in my eyes every day, 365 days a year. Still i am specializing in Cardiology. It's not easy but it's probably the only option.

  50. A beautiful lady. Thank you for bravely speaking up for those of us whose voices are silenced and those of us who are suffering invisible and chronic illnesses daily. I pray for everyone to experience total wellbeing.

  51. One week of not leaving your house is not a long time 🙄 I haven't left my house in SEVEN YEARS (except to go to the Dr. four times a year). I have had lupus for more than 20 years. I also have a sleep disorder, frequent debilitating migraines, and permanent nerve damage on my head, face and eye- caused by a severe case of shingles. I also have PTSD from being raised in an abusive, alcoholic, narcissistic family. Which includes depression, rage, nightmares, anxiety, panic attacks, flashbacks, OCD, and phobias. Including agoraphobia, which is why I don't leave the house (also, I feel too sick and tired to go anywhere). And I have no friends or family to support me. And nobody offers help, nobody gives me any sympathy. It SUCKS.

  52. I have a long list of multiple chronic conditions (MCC) and a long list of medications I am on, as well as other interventions. It severely affects my day-to-day living and functioning. There is nothing out there for people with MCC who are not elderly. I have searched high and low. Yet there are millions of us out there. I had epilepsy from infancy to age 8, was diagnosis free until my later teens when I started to "collect" illnesses: chronic migraine, fibromyalgia, ibs-d, diabetes, gastroparesis, and the list goes on and on…

  53. 9:50 What a horrible and inhuman world we live in that anyone should have to fear or face a life in constant poverty , their only crime the misfortune of being disabled.

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