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)

87 Replies to “The Hell of Chronic Illness | Sita Gaia | TEDxStanleyPark”

  1. 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.

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

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

  4. 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.

  5. 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.

  6. 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.

  7. 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.

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

  9. 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!

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

  11. 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.

  12. 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

  13. 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

  14. 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?

  15. 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

  16. 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..

  17. 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.

  18. 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)

  19. 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.

  20. 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.

  21. 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

  22. 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.

  23. 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

  24. 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..

  25. 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.

  26. 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

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

  28. 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’

  29. 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.

  30. 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

  31. 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.

  32. 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.

  33. 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.

  34. 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…

  35. 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.

  36. 20 000 people contract chronic lymphocytic leukemia every year (CLLSLL). No cure, and extreme fatigue, leading to other chronic diseases. Fatigue management is the route to having a life.

  37. I have a wonderful husband that is taking care of me, I have invalidity pension, unfortunately no children, my husband has as well a chronic illness and we couldn't take care of children and my illness is genetic and we had 50% chance to have a disabled child

  38. This is awesome! All of our friends and family members should be required to watch this! Hashimotos, CFS, Hypothyroidism, Hypertension, IBS, TMJ, Depression, and a few more here! Where my peeps at!?

  39. I gave this video a thumbs up 👍🏼 and this comment! 👉🏼 Check out my Youtube channel friend. I was in a car accident that gave me chronic pain. While you watch my new video, please hit the thumbs up and write a nice comment too! I am sure if you are watching my videos, you are experiencing chronic pain as well. From me, a Youtuber, to you! See you around 😊🙏🏼 Hugs.

  40. Having an invisible illness sucks. Takes a long time to to accept, get over it (maybe you don’t) but there is always someone who is rooting for you to make it. Might not be someone you know. But just know there is a community of people just like you trying to make it too. S/o to all my spoonies, ibders 🙏🏽Going into this year sick and in a flare but mentally better then I was last year and I hope all y’all are too. God bless 💜🙏🏽

  41. After 25 years of Cronic pain .ive learned a way to ease my pain . I hope it helps you ? Lay down in a quiet room .clear your mind and listen to your pain in your mind look at it like dust or somthing that needs to be washed cleaned from you …close your eyes find where the pain is .now soake a cloth in clean water and just wash the pain away remember its your mind brain thats creating the pain .wash it away like you would clean your windows .some times i use a shovel a brush what evef it takes .your mind can do great things .it might take a while to see results but its worth a go . Use what ever suits you .the power of the mind …their is records of many people who used this mind vision to heal themselfs of illness and remember you are never alone .those of us who suffer and understand what you are going through are praying for you .one day it will be a thing of the past you will sit in the sun and say i got through it and i am much stronger now to help others . God bless

  42. If you have chronic illness warning you not to watch this. You already know what its like. You don't need to start thinking negatively. Think postive thoughts invision you are light and healing every day. Don't focus on your ailments, it will do you more harm being consumed with them in the mind.

  43. I have Sickle Cell Disease and have been suffering with it all my life. Frequent hospitalizations, pain crisis, iv's and constant pain medication are regular for me. I'm 23 now and sometimes all I want is just to die so I can escape the pain and misery of having to be alive and dealing with my illness. So much of my strength and happiness has gone to dealing with my illness. It's to the point where im afraid to sleep at night out of fear of getting sick.

  44. I did three really important things for my disease prevention and overall wellness:

    – I stopped chronically breathing through my mouth…big no-no

    – I started using the BreatheEasy Lung Exerciser for inhalation and exhalation breathing therapy

    – and I sleep with a small piece of tape over my lips to keep my mouth closed during sleep…stops snoring, apnea, dry mouth and more

    My chronic fatigue and asthma both are gone now and my outlook on life is exceptional because I’m sleeping better and have more energy. I’m 54.

  45. When she said that having not left her house for a week was a long time, I was like, "Oops! That's not even why I'm listening to this but I've been afraid to leave the house for months on end!"

  46. The audience at the end: "Yay! Yay! You're amazing, and we will accept you and accommodate you!"
    The audience the next day: "No, you can't take tissues into the MCAT with you even if you have a deviated septum and allergic rhinitis."

  47. I'm chronicly ill, I can die because of lies/jokes/pranks, if anyone lies to me I will kill you. My life is more important. Then a sick joke.

  48. i have a chornic illness
    cant have a job cant do anything
    someone give a way to kill my self and accept my fate
    i really afraid of death
    i hear that sleep pills is the best choise someone tell how much should i take and which brand

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