In a culture that defines you by what they produce/achieve, being in your 20's with chronic illness is so isolating. You spend all your time and money trying to get better and don't have a lot of time/energy/ability to pursue other things that make life worth living. Thank you for sharing your story 🌼
so true... also it's hard to let go of how you felt before chronic illness when your body was just working perfectly.. cant help but wish it back instead of accepting what is considering all the things which are still working well
As someone with a chronic illness that is now in its end stages, I must say... this would be the best time to have any kind of illness. The amount of connection we can have now that is all virtual was unheard of ten to fifteen years ago. I know it's not the same but it's about adjusting. I am in a constant cycle of grief and I realize that if I fight it, I'm going to make life a lot more painful so I am learning little ways to accept it as I go and understand that we as humans are always changing and I wouldn't have remained the same person anyway... as I aged. I think we have to keep ourselves mentally healthy first and foremost - the rest will happen as it comes.
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.
I’m in chronic pain everyday with ankoloid spondylitis My brother in law who is a retired paramedic firefighter claims I’m addicted to pain pills I do not abuse my medication and only get my medication through my primary doctor He has NO understanding of the pain I go through everyday I’m 62 and If it wasn’t for my medication I’d be bed ridden Recently he had a medical emergency with his own health Hopefully now he’ll understand
@@mrkrantibawane8599 man I have chronic illness asthma. My condition was serious but now is critical. Now I have COPD and I can't breathe. I diagnosed with COPD 1 year ago in age 24. The doctors said that is really rare because I don't smoke tobacco and also I am too young for COPD hope the best
As someone with a Chronic Illness, I’ve learned ppl don’t want to be bothered or inconvenienced with my health problems. That is why they don’t bother with putting energy into our relationship.
I think you are right overall...but some have listening ears and open hearts. Also, since people can only give so much, maybe find several sources of support. Easier said than done though, eh.
I'm on the flipside, due to my chronic illness, I don't make time for relationships beyond long-term friendships. It takes too much energy that I don't have at the moment that I'd redirect on chores, hobbies, or work. 🤷♀
When you are at school and your mind is working perfectly but your body is tattered from all your symptoms. It feels like you are trapped. Being a strong person in a weak body is infuriating.
True its like you cant express your ideas you have on a daily bases. Its like being in jail your mind is perfect but your body is pulling it down slowly. Tomorrow I will be healthy again. Thats a facttttttt
very frustrating. especially compounded with my multiple mental illnesses (adhd, autism, anxiety, and depression) and i almsot never have a genuinely productive day
All of this! I was told I’m not disabled because I’m articulate, intelligent, & can read & draw an analog clock. That I just need to not be lazy. 🙄🙄🙄🤦🏼♀️🤦🏼♀️🤦🏼♀️🤬
@@fjakjcwjcjjwjcch same I have all those too And Chronic fatigue syndrome IBS Other undiagnosed illnesses Each day I try to be productive but end up being unproductive
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.
I hate having chronic mental and physical health illness. It's so hard to exist some days. It hurts. But we are all warriors. Mental, physical, it doesn't matter. Even fighting to get up in the morning is an incredible thing. You're heart is still beating. You are still here. And for that I am proud of you.
I have a chronic illness which is undiagnosed. My lab results come up normal so doctors tell me look your probably just depressed take these antidepressants. I have to work because I'm the provider. My kids say yeah mom you never feel good. No one understands and even when friends try they dont really get it. It is crippling. I am now just starting to see specialists. I pray they find out. No one wants to be bedridden after a job. That's not life. I want to find out so that one day I can help and tell people with a mystery illness that there is light at the end of tunnel. It is both frightening and frustrating to go through this alone
"Chronic illness is a world of loss." Oh so brutally true with many physical activities, no matter how much you refuse to believe that or how positive your outlook, sometimes you have to just forget about doing things you used to take for granted. Could be as simple and mundane as being able to put your freaking shoes on; which can take hours, or days, or weeks. Never give up.
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.
Uraniabce Thanks for your comment. It sounds like you are both brave and exceptional people. Frequently I think that just dying would be better for everyone, but people love me and that keeps me going even though I think that is unfair for them. They say, no it’s not. I’m not sure I agree, but they insist. Some people are pretty incredible, but there is only so much they can take I think. Tough questions, few answers.
I have Crohns also, with an ostomy. I was diagnosed with chronic sarcoïdose in 2001. The mental war can be harder than the physical sometimes watching life go by while yours stands still. I do think the the bad days make the good days worth while even if that day only lasts an hour or 2. And for the last 16 or so years I still believe I'll be back running the roads and kayaking....
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.
I think it is to do with survival of the fittest, and is programmed into us as a species, that ill people get side lined, whilst the well people forge ahead!
You can't even imagine how worse it feels to have a chronic disease and that in your 20s or when you are still in a student life pursuing your dreams, people will consider you bad they'll not understand or reach out to you. Earlier i used to be very focused and sharp relating my studies but since i am under medications i just feel fatigue or sleepy rest of my days i got acnes and hairfall, gained weight. . I have a lot dreams about my life i want to enjoy every bit of it. But,sometimes i doubt weather I'll be able to get out of all this or not💔💔💔
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.
Greg Foster I understand and wish the best for you. That may not help, but at least it is genuine. Take care brother, I am in constant intense pain for decades as well. It’s so hard to live with, everyday for years. Some people have the illusion they would handle it better. See you on the other side my friend.
@Greg Foster 39 years? I've only been dealing with atypical trigeminal neuralgia for 4 years and CRPS. Unfortunately if you don't have good insurance as you know there's not a lot of options there's not really many options in the first place. It's life crushing
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.
Wow. What an amazing comment. When I read everyone's comments I feel less alone in the world. Social Work is very ableist where I live, and I can't even hold down a public service job. I would never snicker at a client with chronic illness, but hey. I have been on both sides- a giver and receiving help. xx
ive been chronically ill since i was born. i am now 19, and people tend to say that i am lying because they can not see it or will dismiss it because it is not “valid”. thank you for speaking up.
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!
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
Fibromyalgia and endometriosis(which also made me infertile) along with other issues have stolen so much of my life from me. I spent a while convinced that there was no God, or if there was then He was cruel for letting anyone suffer. Through a dreaded and reluctant Church visit when a friend was taking her perpetual vows, I truly felt God reach out to me. Since I let Him in and made time in my life for prayer and Mass everything has become 1000x easier to deal with. I have some human support, but God is my strength. I would not still be here without Him.
@@BirdyMum Fibro, endo and ankylosing spondiliytis here. I was ok untill 24, then literally one day my life changed forever. I am no longer me anymore. Not the same person. You are so right about it. I mean humility and being a simple person can change so much. At least inside. Gratitude as well. Hope all sufferers can find the inner strength throughout their lifes.
I have PCOS and it's really bad. Right now my family misunderstands me and I have no support system. I feel so alone. I feel the depression eating me up. I'm always locked in my room crying. I battle suicidal thoughts everyday and it's such a struggle to get up every morning. I barely sleep. If I get up to 4 hours of sleep, then it's a miracle. I feel this tiredness and exhaustion deep inside and all other me. I don't know what to do.
@@Yoshi92 Hi hun oh please dont cry. I am a woman that just speaks the honest TRUTH. It has known to get me in trouble. Lol but no please dont cry. Just use what i said and know that you will be ok. What ever illness you have. Please fight it you have great strength that you just dont know you have. Sorry to know your sick but look at it like this YOU ARE ALIVE. YOU LIVE TO SEE ANOTHER DAY. BELIEVE IN YOURSELF HUN OK GOD BLESS YOU AND WIPE AWAY THOSE TEARS OK PLEASE TRUST ME YOU WILL BE VICTORIOUS. JUST KEEP SMILING AND BE HAPPY. GOD BE WITH YOU AND GIVE YOU PEACE IN YOUR LIFE ❤❤❤❤❤❤❤❤❤❤❤❤❤🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏
I cannot help but wonder what would happen if dismissive doctors, family, friends, etc. had to feel as we, the chronically ill, do...even for just a half hour.
I had ro look at the username who wrote this because I definitely could have written that...I say it or think it so often. Lucky for them they have no clue!
I think those of us suffering for 10 to 20 years, for many people I believe to really have any understanding probably need a good 2 years of complete disability to understand and be compassionate. With no real support from family or friends. You lose your life, and many of us that are extremely sick physically and living in unbearable physical pain DONT get help from Dr due to drug abusers. Why do I have to suffer now even more because of all the political games?! I do my absolute 💯 best but No One Around me gets it. I NO longer care if other People understand, I Don't have anymore Energy to Waste. For Real 💯
@@mrs.nyc79hey, I don’t know what exactly you’re going through, but I hope you stay strong. Even though sometimes it might all seem pointless and pretty much like a dead end, but even in those times there’s always some light and warmth to be found somewhere near. Please don’t lose hope. May you get relief from your pain and suffering!
Same here mrs NYC ,i totally get it, mine has been 24 years,my old identity is gone and i can't recognize the person I have become anymore because of chronic mental and physical pain, debilitation and fatigue,irs brutal. Anytime you are able to,if you're willing to talk,im available.❤
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’
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.
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.
I feel your pain (on many levels). I was working on a biology degree. 15 credit hours deep and some hard work to achieve a 4.0 gpa later i couldn't sit anymore because of what was then said to be sciatica (its much more than that) and i had to drop out. Every day i am bitter because of missed opportunities. And angry over all the misdiagnoses i have received over the years. I have multiple bulging disks, one is pushing on my spinal cord, foraminal stenosis, a pinched sciatic nerve and arthritis. I think another big issue is doctors need to pursue finding the problem in a more efficient way. I lived with pain for 10 years until someone bothered to actually find out what is wrong.
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.
"with chronic illness, it is a world of loss." Couldn't have said it better myself. Yes, life can be beautiful and you grow to be so strong. But it'd be a disservice to ignore the total feeling of loss. For me, I was diagnosed with my autoimmune disease at the age of 21. I was at the very beginning of my young adulthood and I had become homebound, unable to leave my house at all, unable to walk and struggling to do any type of day to day activity. I grieved the life I couldn't have, I'm almost 30 now and I'll always wonder how much I would've done and how much I would've seen if it had not been for this disease. There's so many of us, all on this chronically ill journey together.
I loved her positive attitude and what she said about the big job is accepting it. That is so true! It IS our biggest job (in my experience so far). I wish anyone reading this comment a bunch of peace and a wave of acceptance and happiness that warms your soul.
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
I developed chronic fatigue syndrome 2 years ago. I’ve had to give up my job as a high school teacher, horse riding and find it difficult to accept my limitations.
Idk if it is common for it to go away or go onto remission, but mine did. It was slowly over a few years or so, but it has been gone for over 12 years now. Wish you the best!
I suffer from chronic Sinusitis, depression, morning fatigue and social anexiety. My family members think, it's my willpower problem. There is too much bagger on my shoulders. Sometimes, I barely have energy to do anything. People who don't suffer from chronic illness think life is like their's and it's all our fault. Sometimes, I curse certain people so they can get a taste of their own medicine.
I have chronic illness I suffer from chronic pain 24/7 and sometimes taking the medication makes me sleep so I don't have no social life I not giving up but living like this is no joke. Thank you for making people more aware of chronic illness.
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Bless you beyond!! Ty for your honesty! I was diagnosed at 18, I’m now 58, I feel for you and many dear brave soul!! Shared you on my FB, so many can understand, if they’re brave enough to understand.
My child has been ill since she was 18 months old. She is now at the tender age of 14 trying to learn how to accept her illness and what it means for her future and her own mortality. It’s heartbreaking and inspiring all at the same time.
I think having a child with an illness would be more difficult than having it myself. I am sorry, but sounds like she is blossoming. Bittersweet I am sure. She isn't alone. Luckily she has you...and she also can know there are many others having to fight these types of battles as well. Soldier on! ❤️
I really needed this. I'm going through some medical stuff right now and I'm very scared of what the future might bring with it. Stay positive and don't lose hope.
I believe in a parallel universe others are checking in on me, in this realm, im incredibly isolated & lonely. I literally have not been able to locate or obtain care, physical, or mental. Like everyone in the world around me, has just left me to die as I am and right in front of everyone. I do not want to give up.
I have chronic migraines for three years now and constantly try to balance my life's dreams with my daily fears of being in pain. It was a hard journey, but I'm getting better at this and seek help in many different ways from fitness to nutrition coaching to behavioral therapy. I've come a long way and I'm hopeful that one day my migraines with "just" be episodic. Good luck to everyone out there!
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!?
If you have Hashimotos and IBS, the IBS might be SIBO (small intestinal bacteria overgrowth). SIBO is very common with hypothyroidism. Breath tests can diagnose you.
It’s a daily reckoning of “how can this be ?” And “how can I make the best of my ability?” And more. I never imagined this constant pain (spinal cord injury) would be my life. BUT I’m also proud of myself for just finding strength. Life is a gift and I want to unwrap and enjoy as many moments as I can.
Thank you, I totally agree! I've been sick all my life but had to pretend I wasn't just to fit in. It hasn't been easy, in fact there's been many times where I've felt like giving up. But I'm still here! And still trying to find a way to carry on. Thank you for making me feel "normal" when I really am anything but normal. It's good to remember there's millions of other people in the same boat, not always with the exact same illness, but with struggles nonetheless. Much love and many blessings, Om, Amen 💕🕉🙏
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.
Just checking, but are you implying that an illness has to be constant for more than 3 months or that you have had it for more than 3 months. Because being laid up in bed for weeks at a time missing work and life, taking daily medications, avoiding strenuous activities, and changing dietary requirements to mitigate the constant threat of Gout attacks is pretty chronic to me.
originalShorai when your sick for more than three months its considered chronic according to my doctors. I used to have gout attacks btw; gout is caused by accumulated “lead” in the body, look into chelation to get rid of it.
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.
@@SitaGaia I was also given your TED talk in my Bachelor of Counselling this semester. Thank you for sharing your experiences with chronic illness and here's to a more inclusive and empathic paradigm!
@@v.dargain1678 absolutely! If anything my illness has taught me is to appreciate the life I have! But it was a process to get to where I’m at. I definitely had moments where I felt very discouraged
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.
People assume my weight is the cause for most of my symptoms instead of a symptom/complication. I have had so many well-meaning people say I would feel better if I would just exercise. Imagine being in agony just to get up and walk a few steps to the bathroom. Also, the mechanism of standing up and sitting down on the toilet is so bad I have fallen asleep on the toilet a few times because it was too much work to get up again. The high-level pain meds I take barely take the edge off. I have lymphedema as a result of cancer treatments several years ago, and AOSD which is an auto-inflammatory disease. It is not uncommon for my skin to literally feel like it is burning. Prednisone made my bones brittle and I gained so much weight on it. I don't have supportive Drs and even my usually loving and supportive family have called me lazy at times. You can imagine my mental health is up and down and I am on anti-depressants for that too. My best advice is dont ever judge someone in shoes you have not walked in.
Just passed 6 years on September 1st of physical chronic pain. It's getting worse. Especially after failed procedure. I'm 28 now and I feel like my life is over. But everyone reminds me "i look fine."
not sure if it was intentional but I wanted to thank you for speaking slowly and take breaks. my concentration and processing problems make it hard to follow otherwise.
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!"
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.
The quote "A chronic illness, is a world of loss," really really hit me. I have so many chronic illnesses and all of them stem from my rare genetic connective tissue, cEDS. It is such a lonely thing, but it is all I have ever known. Even though it is hard; I wouldn't change my life if I had the choice, I am proud of what my illnesses have helped me to become. I know I am a better and more empathetic person because of what I have been through. The only thing I would change is how society perceives chronic illness. I don't want sympathy, I want respect. I know this was awhile ago but Thank you for this amazing Ted talk; Sita. You are strong and beautiful and your talk here is bringing so much awareness to what its like for people going through chronic illness. Thank you, all the best to you.
I might have e a subtype of a form of EDS. I also have many health issues. There isn't a lot of representation out there for ppl with chronic pain or health issues. This was nice.
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.
Stigmatized by a disease "only drunks get.". I found out I have liver cirrhosis. Never did drugs or drink or smoked. Drs never pointed out the seriousness of fatty liver or why I had low platelets or elevated enzymes. I hope I can come to peace with this as it's hard. It's an epidemic and maybe people will stop assuming when it's them or their mom or their brother.
So besides having NASH and hemochromatosis, I also have around 10 other, invisible, and visible chronic illnesses, autoimmune disorders and chronic pain. And if not the diagnosis many of the symptoms like dry eyes and dry mouth syndromes. I guess you need to include the many, many side effects many of the medications for these disorders cause, like cancer, and bone pain, hair loss, and on and on and on. For instance the psychological, emotional and societal issues...It almost becomes a which came first? The chicken or the egg?
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
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.
I am sick all the time. This is due to medical malpractice. (Turns out that after a 'simple procedure', I was released from hospital with sepsis, having a wbc count of .9. When I went back 3 days later, it had taken its course and I ended up on a ventilator in the ICU with HA septic shock and HA double pneumonia.) Even though i did not sue, the doctors where I live (small community in upstate NY) do not help me now because they are more concerned about covering up for the offending doctor and hospital. I have become too sick to travel elsewhere for help, so instead I must suffer. When the medical community took my health, they took my life. To add insult to injury, no one cares. I am surprised each day that I wake up. Then the cycle of suffering begins all over again. Because my immune system was destroyed, I pick up additional illnesses on an all too regular basis. I have no idea what to do to feel better.
Thank you for this talk. I have a rare chronic autoimmune illness called dermatomyositis. We need to dissolve the stigma of chronic illnesses and not judging others for how they are feeling or acting!
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.
birdlynn hubbard I understand that. I couldn’t play all the sports my friends could play since I was about 12. I can’t count how many recesses I sat out of because of my health problems.
So I'm just coming across this video now. I'm a Filipino who was born with a brain injury, and living with diabetes who defied all the assumptions, including not stuttering, possessing a good vocabulary, and strong memory on top of being genuinely healthy. Strangely I'm not processing the lows of her presentation...I think it might be how fabulous she looks!!! She just looks 😮❤ so awesome! I can't help thinking how much of a hero she presents to be ( given I don't actually know her ). If she's reading this....your concerns are valid and girl.... you're awesome!!!
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 💜🙏🏽
sometimes i wished i was born in the era where people's consciousness are transfered into invincible machines. it sucks that many strong, ambitious minds are trapped and prematurely ended in broken bodies.
I hope this blesses some... 🙏 I was 5 years of chronic illness! I was Semi Housebound, lost my health, job, finances and my fiance left me. I couldn't even look at electronic screen for 5 minutes, or hold a 10-minute conversation. But God did an amazing work. I now have a Christian Channel where I encourage people and show them what God did in my life and that there is hope for you also. ✝️🔥😊 *Keep believing even when it's hard* 🙏❤️🔥 *All things are possible with God*
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
Yes I got very itchy skin problem over 35 years,very itchy at night,lost my sleep,I hope people can show agape to to those suffer from incurable chronic disease,give us strength to carry on and on,
I have SLE and I stopped justifying the symptoms, people don’t get it and I’m afraid to lose my job, friends, hobbies, I even isolated myself from my family cause I don’t want to feel like a burden
I'm just 18 I have skin disease which comes from my dad's blood. The doctor said it won't cure. I search for this to motivate myself 🙂 I can't explain my feeling right now
I'm using this opportunity to appreciate Dr. Anii on TH-cam for his Herbs Medication that i used in curing my Herpes infection. I feel so Happy All thanks to Dr.anii for his wonderful work you can as well contact him now for help. stay safe stay blessed
I have multiple chronic illnesses, most significantly crohn's and ankylosing spondylitis, and neurological impairment, which has led to poor mental health. I spend as much time doing what I can to be functional for the few commitments I manage to keep as most people do at work. Yet I still feel shame and like others think I'm a hypochondriac if I express my challenges, because they don't get to see me first thing in the morning when all I want to do is sleep forever. Thanks for raising awareness.
Well put. It feels terrible to be judged, as if it's our fault we are sick. Or as if we are lying. I have to work on accepting that other people don't get it.
@@amysho2192 much compassion to you. It's so frustrating finding proper care.. And pray depression or anxiety isn't on your chart, because 9 out of 10 doctors will use it to dismiss any intense experience of pain as some kind of delusion some cognitive therapy and yoga would fix... (and those are great things, but not necessarily helpful when bending over makes your organs feel like they'll burst)
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.
Your not alone. I am sorry we are going through this. I often wonder the same thing-what's the point of living, because I'm only existing not living. Most days, I don't know-whether I should scream, cry or beg for death. I don't like to sound negative, because negative is not good. However, when Drs. can't help you and their is no cure ?
I had a friend with Sickle Cell Anemia. She was about 40 when I met her. In and out of the hospital. I wish I knew how difficult it was for her. I was only worried about my own health issues when we went to college together. I'd bring her fries, Pistachios, and Strawberries for her to eat at the hospital. Jennifer. Miss her.
Pcod, acne, pitted scars, melasma, hirtusim, sagging skin, irritable bowel syndrom, Ankylosing spondylitis, diffuse myofacial pain symdrom, allergies, androgen alopecia, arthiritis depression.. Suffering from all of these... Biggest regret- had taken contraceptive pills...past 5 years ago..for pcos After these pills all my health problems started.. After all of these,at such a young age ... its becomes so hard to focus on study, carrer, maintaing relationship ...
I have experienced this with RA. It’s horrible. Thank you for sharing this information . I pray for the day when- Isaiah 33:24 And no resident will say: “I am sick.”
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.
Systemic Cobalt Poisoning from Metal on Metal hip implements has the exact same symptoms of MS . . . but most of the cobalt drains out, but the years of being eaten in all your organs by the deadly cobalt, the damage is permanent and continues to sicken one to extreme chronic illness . The damage remains. I have 5 white lesions on my brain, have had a couple of strokes, one that ended up flat on the sidewalk wrenching my neck, and bruising my spinal cord. I've had atonic seizures (drop attacks), live alone, and am terrified
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.
I have chronic pain in my legs and because im staying positive now even my doctors think that i’m managing and coping very well, while im in pain everyday.
I’ve been struggling with chronic pain and illness for years and still can’t get the medical care I need. It’s so hard for people like us to be believed when tests don’t show anything. It seems like if we’re not on the floor screaming in pain we don’t deserve relief. It can be a long road but I hope you find help and answers soon!
I only understood having chronic symptoms once you really have it. I suffered from Chronic Pelvic Pain Syndrome that has been misdiagnosed as Prostatitis. The continuous antibiotic regime damaged my gut and has resulted to Irritable Bowel Syndrome, another chronic issue. I deal with them everyday. Some days were almost symptom free, in some days even doing anything in particular feels like a chore. Thank you for this wonderful talk
BEAUTIFUL SOUL💖 And me too! Yes Decades of poverty. In some ways you're blessed to have had a "diagnosis" mystery chronic illness. That is what I had. No support for this. Acceptance is tough and being with people that understand of crucial.
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."
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...
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
socializing and doing work activities is so difficult with chronic illnesses. no one understands and im definitely not going to tell an employer for them to think i cant do the job
Great job! I've read your blog quite a few times but just happened to stumble in this while browsing TH-cam. I have epilepsy too but it's not intractable. I still understand the medication side effects and anxiety. Keep on keep in' on!
In a culture that defines you by what they produce/achieve, being in your 20's with chronic illness is so isolating. You spend all your time and money trying to get better and don't have a lot of time/energy/ability to pursue other things that make life worth living. Thank you for sharing your story 🌼
so true... also it's hard to let go of how you felt before chronic illness when your body was just working perfectly.. cant help but wish it back instead of accepting what is considering all the things which are still working well
Same here ❤ and hard to not grieve about it too 🤕 the person u used to be able to be.
@@lunaleia952yes!!!
Well put.
As someone with a chronic illness that is now in its end stages, I must say... this would be the best time to have any kind of illness. The amount of connection we can have now that is all virtual was unheard of ten to fifteen years ago. I know it's not the same but it's about adjusting. I am in a constant cycle of grief and I realize that if I fight it, I'm going to make life a lot more painful so I am learning little ways to accept it as I go and understand that we as humans are always changing and I wouldn't have remained the same person anyway... as I aged. I think we have to keep ourselves mentally healthy first and foremost - the rest will happen as it comes.
I have an "invisible" chronic illness :( People think I am lying about being in pain all the time. Thanks for talking about it.
That Girl I live with chronic pain and diabetes. I know how you fell .
Lost everything over a syndrome of symptoms often called myalgic encephalopathy (CFS).
You are not alone. May you find courage from your peers.
Same 😕 sorry you go through this too
I believe you
Same here.bed bound most days and can't hardly do anything. Struggling just to exist.also very lonely.
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.
Same here..!! They think we're lying. So sad.
I’m in chronic pain everyday with ankoloid spondylitis
My brother in law who is a retired paramedic firefighter claims I’m addicted to pain pills
I do not abuse my medication and only get my medication through my primary doctor
He has NO understanding of the pain I go through everyday
I’m 62 and If it wasn’t for my medication I’d be bed ridden
Recently he had a medical emergency with his own health
Hopefully now he’ll understand
@@mrkrantibawane8599 exactly :(
same here, its been 3 years now and still a massive struggle
@@mrkrantibawane8599 man I have chronic illness asthma. My condition was serious but now is critical. Now I have COPD and I can't breathe. I diagnosed with COPD 1 year ago in age 24. The doctors said that is really rare because I don't smoke tobacco and also I am too young for COPD hope the best
As someone with a Chronic Illness, I’ve learned ppl don’t want to be bothered or inconvenienced with my health problems. That is why they don’t bother with putting energy into our relationship.
I think you are right overall...but some have listening ears and open hearts. Also, since people can only give so much, maybe find several sources of support. Easier said than done though, eh.
So true
I'm on the flipside, due to my chronic illness, I don't make time for relationships beyond long-term friendships. It takes too much energy that I don't have at the moment that I'd redirect on chores, hobbies, or work. 🤷♀
Everyone is going through their own issues,its life generally,it is hard.
Chronic illness sucks. Especially when it’s “invisible”. Accepting my “new normal” is slow progress but getting there.
Mama Bear it takes time. Hang in there!
I can't except it, I'd die before I except it.
Same Mana Bear
When you are at school and your mind is working perfectly but your body is tattered from all your symptoms. It feels like you are trapped. Being a strong person in a weak body is infuriating.
True its like you cant express your ideas you have on a daily bases. Its like being in jail your mind is perfect but your body is pulling it down slowly. Tomorrow I will be healthy again. Thats a facttttttt
very frustrating. especially compounded with my multiple mental illnesses (adhd, autism, anxiety, and depression) and i almsot never have a genuinely productive day
I actually feel the same! I can relate
All of this! I was told I’m not disabled because I’m articulate, intelligent, & can read & draw an analog clock. That I just need to not be lazy.
🙄🙄🙄🤦🏼♀️🤦🏼♀️🤦🏼♀️🤬
@@fjakjcwjcjjwjcch same
I have all those too
And Chronic fatigue syndrome
IBS
Other undiagnosed illnesses
Each day I try to be productive but end up being unproductive
I've found that sadly most people don't care, especially when it's invisible.
Being chronically ill and disabled is so hard and challenging, the mental health toll it's taking is overwhelming
Soldier on!
Absolutely, how are you now?
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.
I hate having chronic mental and physical health illness. It's so hard to exist some days. It hurts. But we are all warriors. Mental, physical, it doesn't matter. Even fighting to get up in the morning is an incredible thing. You're heart is still beating. You are still here. And for that I am proud of you.
Ty❤
Love the comment. Thanks for encouraging others.
❤❤❤❤❤
I have a chronic illness which is undiagnosed. My lab results come up normal so doctors tell me look your probably just depressed take these antidepressants. I have to work because I'm the provider. My kids say yeah mom you never feel good. No one understands and even when friends try they dont really get it. It is crippling. I am now just starting to see specialists. I pray they find out. No one wants to be bedridden after a job. That's not life. I want to find out so that one day I can help and tell people with a mystery illness that there is light at the end of tunnel. It is both frightening and frustrating to go through this alone
"Chronic illness is a world of loss." Oh so brutally true with many physical activities, no matter how much you refuse to believe that or how positive your outlook, sometimes you have to just forget about doing things you used to take for granted. Could be as simple and mundane as being able to put your freaking shoes on; which can take hours, or days, or weeks. Never give up.
I felt that quote, it really struck me.
I miss riding a bike so bad. I have dreams about it. That and just running up a hill. Crazy how much I didn't realize what a gift that was
I miss hope, being energetic and the ability to achieve my dreams.
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.
I am so glad that this talk helped you....I can't even imagine having Crohn's Disease....I am with you in spirit
Uraniabce Thanks for your comment. It sounds like you are both brave and exceptional people. Frequently I think that just dying would be better for everyone, but people love me and that keeps me going even though I think that is unfair for them. They say, no it’s not. I’m not sure I agree, but they insist. Some people are pretty incredible, but there is only so much they can take I think. Tough questions, few answers.
I have Crohns also, with an ostomy. I was diagnosed with chronic sarcoïdose in 2001. The mental war can be harder than the physical sometimes watching life go by while yours stands still. I do think the the bad days make the good days worth while even if that day only lasts an hour or 2. And for the last 16 or so years I still believe I'll be back running the roads and kayaking....
Night and day divides socializing making us lose the day out.
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.
Dear Lukasz, I can relate to what you are saying, I have been there, God be with you brother, He will see you through
Sadly
Lukasz Przek you’re right.
I think it is to do with survival of the fittest, and is programmed into us as a species, that ill people get side lined, whilst the well people forge ahead!
Kolodny I'm looking at you
You can't even imagine how worse it feels to have a chronic disease and that in your 20s or when you are still in a student life pursuing your dreams, people will consider you bad they'll not understand or reach out to you. Earlier i used to be very focused and sharp relating my studies but since i am under medications i just feel fatigue or sleepy rest of my days i got acnes and hairfall, gained weight. . I have a lot dreams about my life i want to enjoy every bit of it. But,sometimes i doubt weather I'll be able to get out of all this or not💔💔💔
❤❤❤
Sharp...I feel that
I’m 18 and have 1
I gave up my dreams due to chronic illness but found new ones.
i just want to be healthy
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.
Greg Foster I also have TN I’m so sorry 😐
Greg Foster I understand and wish the best for you. That may not help, but at least it is genuine. Take care brother, I am in constant intense pain for decades as well. It’s so hard to live with, everyday for years. Some people have the illusion they would handle it better.
See you on the other side my friend.
What Is Trigemminal Neuralgia?
@Greg Foster
39 years? I've only been dealing with atypical trigeminal neuralgia for 4 years and CRPS. Unfortunately if you don't have good insurance as you know there's not a lot of options there's not really many options in the first place. It's life crushing
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.
What an amazing comment!
Nope, mine is the illness, others don't concern me.
Wow. What an amazing comment. When I read everyone's comments I feel less alone in the world. Social Work is very ableist where I live, and I can't even hold down a public service job. I would never snicker at a client with chronic illness, but hey. I have been on both sides- a giver and receiving help. xx
I loved reading what you wrote . I am also a type 1 girl
You nailed it!
ive been chronically ill since i was born. i am now 19, and people tend to say that i am lying because they can not see it or will dismiss it because it is not “valid”. thank you for speaking up.
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!
Thats literally me and im just 15yrs old
@@Hrishtam same, I'm just 17.
Im 17, dreamt of studying abroad one day but I guess that's not happening now
@@brainded653 same
@@Hrishtam so sorry
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
Fibromyalgia and endometriosis(which also made me infertile) along with other issues have stolen so much of my life from me. I spent a while convinced that there was no God, or if there was then He was cruel for letting anyone suffer. Through a dreaded and reluctant Church visit when a friend was taking her perpetual vows, I truly felt God reach out to me. Since I let Him in and made time in my life for prayer and Mass everything has become 1000x easier to deal with. I have some human support, but God is my strength. I would not still be here without Him.
@@BirdyMum Fibro, endo and ankylosing spondiliytis here. I was ok untill 24, then literally one day my life changed forever. I am no longer me anymore. Not the same person. You are so right about it. I mean humility and being a simple person can change so much. At least inside. Gratitude as well. Hope all sufferers can find the inner strength throughout their lifes.
I have PCOS and it's really bad. Right now my family misunderstands me and I have no support system. I feel so alone. I feel the depression eating me up. I'm always locked in my room crying. I battle suicidal thoughts everyday and it's such a struggle to get up every morning. I barely sleep. If I get up to 4 hours of sleep, then it's a miracle. I feel this tiredness and exhaustion deep inside and all other me. I don't know what to do.
your comment made me cry. dont know why. i have chronic nausea since forever.
hope you are ok
@@Yoshi92 Hi hun oh please dont cry. I am a woman that just speaks the honest TRUTH. It has known to get me in trouble. Lol but no please dont cry. Just use what i said and know that you will be ok. What ever illness you have. Please fight it you have great strength that you just dont know you have. Sorry to know your sick but look at it like this YOU ARE ALIVE. YOU LIVE TO SEE ANOTHER DAY. BELIEVE IN YOURSELF HUN OK GOD BLESS YOU AND WIPE AWAY THOSE TEARS OK PLEASE TRUST ME YOU WILL BE VICTORIOUS. JUST KEEP SMILING AND BE HAPPY. GOD BE WITH YOU AND GIVE YOU PEACE IN YOUR LIFE ❤❤❤❤❤❤❤❤❤❤❤❤❤🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏
Sita...you demonstrated a high level of courage and braveness by doing this talk. Thank you!
Thank you so much Gurdeep!
I cannot help but wonder what would happen if dismissive doctors, family, friends, etc. had to feel as we, the chronically ill, do...even for just a half hour.
I had ro look at the username who wrote this because I definitely could have written that...I say it or think it so often. Lucky for them they have no clue!
I think those of us suffering for 10 to 20 years, for many people I believe to really have any understanding probably need a good 2 years of complete disability to understand and be compassionate. With no real support from family or friends. You lose your life, and many of us that are extremely sick physically and living in unbearable physical pain DONT get help from Dr due to drug abusers. Why do I have to suffer now even more because of all the political games?! I do my absolute 💯 best but No One Around me gets it. I NO longer care if other People understand, I Don't have anymore Energy to Waste. For Real 💯
@@mrs.nyc79hey, I don’t know what exactly you’re going through, but I hope you stay strong. Even though sometimes it might all seem pointless and pretty much like a dead end, but even in those times there’s always some light and warmth to be found somewhere near. Please don’t lose hope. May you get relief from your pain and suffering!
Same here mrs NYC ,i totally get it, mine has been 24 years,my old identity is gone and i can't recognize the person I have become anymore because of chronic mental and physical pain, debilitation and fatigue,irs brutal. Anytime you are able to,if you're willing to talk,im available.❤
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’
Some of us with chronic pain can't tolerate talking with others so visits can be hard.
Drole It is very difficult. Thx for Posting this Comment.
From Spain
I felt this so heavily dating is a nightmare. Cleaning and showering sometimes is so difficult
Like I feel like I’m looked at as flaky I’m always sick
@@Deadtrees15 I feel you , i really do !
So true
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.
I marry a man with Epilepsy I love him so much he is my hero. Thank you.
Ur a queen
I have Seizures and they have completely stolen me from myself tbh! How does he cope?!
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.
I feel your pain (on many levels). I was working on a biology degree. 15 credit hours deep and some hard work to achieve a 4.0 gpa later i couldn't sit anymore because of what was then said to be sciatica (its much more than that) and i had to drop out. Every day i am bitter because of missed opportunities. And angry over all the misdiagnoses i have received over the years. I have multiple bulging disks, one is pushing on my spinal cord, foraminal stenosis, a pinched sciatic nerve and arthritis. I think another big issue is doctors need to pursue finding the problem in a more efficient way. I lived with pain for 10 years until someone bothered to actually find out what is wrong.
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.
I just read your post this is so true.
I am so sorry. Thank you for that reminder. So sorry for your dear mother. May her memories always stay with you.
Loved this I have multiple chronic illnesses and I’ve felt exactly what she described.
Jennifer Berry me too!
"with chronic illness, it is a world of loss." Couldn't have said it better myself. Yes, life can be beautiful and you grow to be so strong. But it'd be a disservice to ignore the total feeling of loss. For me, I was diagnosed with my autoimmune disease at the age of 21. I was at the very beginning of my young adulthood and I had become homebound, unable to leave my house at all, unable to walk and struggling to do any type of day to day activity. I grieved the life I couldn't have, I'm almost 30 now and I'll always wonder how much I would've done and how much I would've seen if it had not been for this disease. There's so many of us, all on this chronically ill journey together.
Same for me...
I loved her positive attitude and what she said about the big job is accepting it. That is so true! It IS our biggest job (in my experience so far). I wish anyone reading this comment a bunch of peace and a wave of acceptance and happiness that warms your soul.
Being sick and in pain most of the time sucks.
This comment section is my only support 🙏🏼
Same girl!
I was feeling down and I came here to get some positive energy
Yes! Drop the "toughen up" attitude of society.
i have 3 chronic illnesses, thank you soo much, i loved this
Same with me
I have five, and counting. Every year its something new added to the list. Very depressing. Bless all who suffer. 😇
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
well said
I’m 5 years in. Job, friends and hobbies are all gone. But I’m thankful for my supporting family. Not all are as lucky to have at least something
I developed chronic fatigue syndrome 2 years ago. I’ve had to give up my job as a high school teacher, horse riding and find it difficult to accept my limitations.
Idk if it is common for it to go away or go onto remission, but mine did. It was slowly over a few years or so, but it has been gone for over 12 years now. Wish you the best!
I suffer from chronic Sinusitis, depression, morning fatigue and social anexiety. My family members think, it's my willpower problem. There is too much bagger on my shoulders. Sometimes, I barely have energy to do anything. People who don't suffer from chronic illness think life is like their's and it's all our fault. Sometimes, I curse certain people so they can get a taste of their own medicine.
I have chronic illness I suffer from chronic pain 24/7 and sometimes taking the medication makes me sleep so I don't have no social life I not giving up but living like this is no joke. Thank you for making people more aware of chronic illness.
I have had to give up my social life. I now embrace isolation. It's better this way
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it helped me to find a community online and go to an undocmatic self help group.
@@jannymatthew5378 lol really ?
Take care :)
Hey man, just wanted to say, take care
Bless you beyond!! Ty for your honesty! I was diagnosed at 18, I’m now 58, I feel for you and many dear brave soul!! Shared you on my FB, so many can understand, if they’re brave enough to understand.
My child has been ill since she was 18 months old. She is now at the tender age of 14 trying to learn how to accept her illness and what it means for her future and her own mortality. It’s heartbreaking and inspiring all at the same time.
What illness she has?
I think having a child with an illness would be more difficult than having it myself. I am sorry, but sounds like she is blossoming. Bittersweet I am sure. She isn't alone. Luckily she has you...and she also can know there are many others having to fight these types of battles as well. Soldier on! ❤️
I really needed this. I'm going through some medical stuff right now and I'm very scared of what the future might bring with it. Stay positive and don't lose hope.
I hope you are ok?
I believe in a parallel universe others are checking in on me, in this realm, im incredibly isolated & lonely. I literally have not been able to locate or obtain care, physical, or mental. Like everyone in the world around me, has just left me to die as I am and right in front of everyone. I do not want to give up.
I have chronic migraines for three years now and constantly try to balance my life's dreams with my daily fears of being in pain. It was a hard journey, but I'm getting better at this and seek help in many different ways from fitness to nutrition coaching to behavioral therapy. I've come a long way and I'm hopeful that one day my migraines with "just" be episodic. Good luck to everyone out there!
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!?
If you have Hashimotos and IBS, the IBS might be SIBO (small intestinal bacteria overgrowth). SIBO is very common with hypothyroidism. Breath tests can diagnose you.
Pudendal nerve damage and pelvic muscle pain, present! Hi peep.
HYPOTHYROIDISM HEREEEEE
It’s a daily reckoning of “how can this be ?” And “how can I make the best of my ability?” And more.
I never imagined this constant pain (spinal cord injury) would be my life.
BUT I’m also proud of myself for just finding strength.
Life is a gift and I want to unwrap and enjoy as many moments as I can.
Thank you, I totally agree! I've been sick all my life but had to pretend I wasn't just to fit in. It hasn't been easy, in fact there's been many times where I've felt like giving up. But I'm still here! And still trying to find a way to carry on. Thank you for making me feel "normal" when I really am anything but normal. It's good to remember there's millions of other people in the same boat, not always with the exact same illness, but with struggles nonetheless. Much love and many blessings, Om, Amen 💕🕉🙏
Thank you I have 3 chronic illness, asthma, and a couple mental illnesses its nice to see someone talking about it
Sending big hugs!
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.
Vince Young 2 and 1/2 years for me so far. Unable to work for a year now.
Just checking, but are you implying that an illness has to be constant for more than 3 months or that you have had it for more than 3 months. Because being laid up in bed for weeks at a time missing work and life, taking daily medications, avoiding strenuous activities, and changing dietary requirements to mitigate the constant threat of Gout attacks is pretty chronic to me.
originalShorai when your sick for more than three months its considered chronic according to my doctors. I used to have gout attacks btw; gout is caused by accumulated “lead” in the body, look into chelation to get rid of it.
Vince Young Gout is caused by a build up of uric acid crystals in the area of attack, not lead. Starting to wonder about this doctor.
Avner Chaim 17 years for me. 😷😤😥🤮
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.
Thank you so much!!
@@SitaGaia I was also given your TED talk in my Bachelor of Counselling this semester. Thank you for sharing your experiences with chronic illness and here's to a more inclusive and empathic paradigm!
Well done Sita, incredible strength. Shine your light.
I really understand and can empathize! I never understood chronic illness until I was struck with one.... it’s HARD!
What did you get?
I have a chronic Csf leak because my connective tissue is weak
@@pennydaytreasures8173 What's the most you've taken?
You bet it's hard ! You have to plan all your daily activities around the handicap .
But life is still worth the living to me .
@@v.dargain1678 absolutely! If anything my illness has taught me is to appreciate the life I have! But it was a process to get to where I’m at. I definitely had moments where I felt very discouraged
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.
You rocked it!
People assume my weight is the cause for most of my symptoms instead of a symptom/complication. I have had so many well-meaning people say I would feel better if I would just exercise. Imagine being in agony just to get up and walk a few steps to the bathroom. Also, the mechanism of standing up and sitting down on the toilet is so bad I have fallen asleep on the toilet a few times because it was too much work to get up again. The high-level pain meds I take barely take the edge off. I have lymphedema as a result of cancer treatments several years ago, and AOSD which is an auto-inflammatory disease. It is not uncommon for my skin to literally feel like it is burning. Prednisone made my bones brittle and I gained so much weight on it. I don't have supportive Drs and even my usually loving and supportive family have called me lazy at times. You can imagine my mental health is up and down and I am on anti-depressants for that too. My best advice is dont ever judge someone in shoes you have not walked in.
Just passed 6 years on September 1st of physical chronic pain. It's getting worse. Especially after failed procedure. I'm 28 now and I feel like my life is over.
But everyone reminds me "i look fine."
I am sorry. It stinks. It really does. I hope you can take joy in some little things and have ppl who love you.
not sure if it was intentional but I wanted to thank you for speaking slowly and take breaks.
my concentration and processing problems make it hard to follow otherwise.
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!"
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.
The quote "A chronic illness, is a world of loss," really really hit me. I have so many chronic illnesses and all of them stem from my rare genetic connective tissue, cEDS. It is such a lonely thing, but it is all I have ever known. Even though it is hard; I wouldn't change my life if I had the choice, I am proud of what my illnesses have helped me to become. I know I am a better and more empathetic person because of what I have been through. The only thing I would change is how society perceives chronic illness. I don't want sympathy, I want respect. I know this was awhile ago but Thank you for this amazing Ted talk; Sita. You are strong and beautiful and your talk here is bringing so much awareness to what its like for people going through chronic illness. Thank you, all the best to you.
I might have e a subtype of a form of EDS. I also have many health issues. There isn't a lot of representation out there for ppl with chronic pain or health issues. This was nice.
@@amysho2192 Are you open to few suggestions and techniques that take 30mins daily of your time at home?
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.
Stigmatized by a disease "only drunks get.". I found out I have liver cirrhosis. Never did drugs or drink or smoked. Drs never pointed out the seriousness of fatty liver or why I had low platelets or elevated enzymes. I hope I can come to peace with this as it's hard. It's an epidemic and maybe people will stop assuming when it's them or their mom or their brother.
So besides having NASH and hemochromatosis, I also have around 10 other, invisible, and visible chronic illnesses, autoimmune disorders and chronic pain. And if not the diagnosis many of the symptoms like dry eyes and dry mouth syndromes. I guess you need to include the many, many side effects many of the medications for these disorders cause, like cancer, and bone pain, hair loss, and on and on and on. For instance the psychological, emotional and societal issues...It almost becomes a which came first? The chicken or the egg?
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
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.
I am sick all the time.
This is due to medical malpractice. (Turns out that after a 'simple procedure', I was released from hospital with sepsis, having a wbc count of .9. When I went back 3 days later, it had taken its course and I ended up on a ventilator in the ICU with HA septic shock and HA double pneumonia.) Even though i did not sue, the doctors where I live (small community in upstate NY) do not help me now because they are more concerned about covering up for the offending doctor and hospital. I have become too sick to travel elsewhere for help, so instead I must suffer. When the medical community took my health, they took my life. To add insult to injury, no one cares. I am surprised each day that I wake up. Then the cycle of suffering begins all over again. Because my immune system was destroyed, I pick up additional illnesses on an all too regular basis. I have no idea what to do to feel better.
Reading these comments... boy I understand. Thank everyone for sharing
Thank you for this talk. I have a rare chronic autoimmune illness called dermatomyositis. We need to dissolve the stigma of chronic illnesses and not judging others for how they are feeling or acting!
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.
birdlynn hubbard I understand that. I couldn’t play all the sports my friends could play since I was about 12. I can’t count how many recesses I sat out of because of my health problems.
This woman is amazing
I don’t even know her but I love her
If only more people were like her
So I'm just coming across this video now.
I'm a Filipino who was born with a brain injury, and living with diabetes who defied all the assumptions, including not stuttering, possessing a good vocabulary, and strong memory on top of being genuinely healthy.
Strangely I'm not processing the lows of her presentation...I think it might be how fabulous she looks!!! She just looks 😮❤ so awesome! I can't help thinking how much of a hero she presents to be ( given I don't actually know her ). If she's reading this....your concerns are valid and girl.... you're awesome!!!
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 💜🙏🏽
Bless u x i have fibro and feel like that everyday x❤
sometimes i wished i was born in the era where people's consciousness are transfered into invincible machines. it sucks that many strong, ambitious minds are trapped and prematurely ended in broken bodies.
I hope this blesses some... 🙏
I was 5 years of chronic illness! I was Semi Housebound, lost my health, job, finances and my fiance left me. I couldn't even look at electronic screen for 5 minutes, or hold a 10-minute conversation.
But God did an amazing work.
I now have a Christian Channel where I encourage people and show them what God did in my life and that there is hope for you also. ✝️🔥😊
*Keep believing even when it's hard* 🙏❤️🔥
*All things are possible with God*
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
People have apathy atleast we who understand such things should have empathy with each other
Yes I got very itchy skin problem over 35 years,very itchy at night,lost my sleep,I hope people can show agape to to those suffer from incurable chronic disease,give us strength to carry on and on,
I have SLE and I stopped justifying the symptoms, people don’t get it and I’m afraid to lose my job, friends, hobbies, I even isolated myself from my family cause I don’t want to feel like a burden
I dont care that I'm in pain 24/7
I just want to be able to sing again
I'm just 18 I have skin disease which comes from my dad's blood. The doctor said it won't cure. I search for this to motivate myself 🙂 I can't explain my feeling right now
Thank you from the bottom of my heart for articulating what I wish I could.
I'm using this opportunity to appreciate Dr. Anii on TH-cam for his Herbs Medication that i used in curing my Herpes infection. I feel so Happy All thanks to Dr.anii for his wonderful work you can as well contact him now for help. stay safe stay blessed
I have multiple chronic illnesses, most significantly crohn's and ankylosing spondylitis, and neurological impairment, which has led to poor mental health. I spend as much time doing what I can to be functional for the few commitments I manage to keep as most people do at work. Yet I still feel shame and like others think I'm a hypochondriac if I express my challenges, because they don't get to see me first thing in the morning when all I want to do is sleep forever. Thanks for raising awareness.
Well put. It feels terrible to be judged, as if it's our fault we are sick. Or as if we are lying. I have to work on accepting that other people don't get it.
@@amysho2192 much compassion to you. It's so frustrating finding proper care.. And pray depression or anxiety isn't on your chart, because 9 out of 10 doctors will use it to dismiss any intense experience of pain as some kind of delusion some cognitive therapy and yoga would fix... (and those are great things, but not necessarily helpful when bending over makes your organs feel like they'll burst)
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.
Your not alone. I am sorry we are going through this. I often wonder the same thing-what's the point of living, because I'm only existing not living. Most days, I don't know-whether I should scream, cry or beg for death. I don't like to sound negative, because negative is not good. However, when Drs. can't help you and their is no cure ?
I had a friend with Sickle Cell Anemia. She was about 40 when I met her. In and out of the hospital. I wish I knew how difficult it was for her. I was only worried about my own health issues when we went to college together. I'd bring her fries, Pistachios, and Strawberries for her to eat at the hospital. Jennifer. Miss her.
Pcod, acne, pitted scars, melasma, hirtusim, sagging skin, irritable bowel syndrom, Ankylosing spondylitis, diffuse myofacial pain symdrom, allergies, androgen alopecia, arthiritis depression..
Suffering from all of these...
Biggest regret- had taken contraceptive pills...past 5 years ago..for pcos
After these pills all my health problems started..
After all of these,at such a young age ... its becomes so hard to focus on study, carrer, maintaing relationship ...
I have experienced this with RA. It’s horrible. Thank you for sharing this information . I pray for the day when- Isaiah 33:24
And no resident will say: “I am sick.”
RA can be reversed , look up videos on TH-cam for RA reversal
There really are some jerks out there. I feel Karma will get them
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.
Systemic Cobalt Poisoning from Metal on Metal hip implements has the exact same symptoms of MS . . . but most of the cobalt drains out, but the years of being eaten in all your organs by the deadly cobalt, the damage is permanent and continues to sicken one to extreme chronic illness . The damage remains. I have 5 white lesions on my brain, have had a couple of strokes, one that ended up flat on the sidewalk wrenching my neck, and bruising my spinal cord. I've had atonic seizures (drop attacks), live alone, and am terrified
I heard of another person who developed similar symptoms after being exposed to cobalt.
God bless. I hope you find peace in this lifetime.
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.
I have chronic pain in my legs and because im staying positive now even my doctors think that i’m managing and coping very well, while im in pain everyday.
I’ve been struggling with chronic pain and illness for years and still can’t get the medical care I need. It’s so hard for people like us to be believed when tests don’t show anything. It seems like if we’re not on the floor screaming in pain we don’t deserve relief. It can be a long road but I hope you find help and answers soon!
@@summero1554 Thank you❤️
I only understood having chronic symptoms once you really have it. I suffered from Chronic Pelvic Pain Syndrome that has been misdiagnosed as Prostatitis. The continuous antibiotic regime damaged my gut and has resulted to Irritable Bowel Syndrome, another chronic issue. I deal with them everyday. Some days were almost symptom free, in some days even doing anything in particular feels like a chore.
Thank you for this wonderful talk
BEAUTIFUL SOUL💖 And me too! Yes Decades of poverty. In some ways you're blessed to have had a "diagnosis" mystery chronic illness. That is what I had. No support for this. Acceptance is tough and being with people that understand of crucial.
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."
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...
Why god chooses us to feel pain chronic illness and we can't live like others living their lives
I m not against god or Jesus process I only want to know the answer :
Same
@@indiannotproudofbeingpunja217 Because you don't believe in Jesus you punjab bish.
I don't know why? But I choose not to have kids, this pain ends with me! :)
@@Ysshyam-m4m me too, I can't bare the thought of my kids going through a crumb of what I have in life.
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
socializing and doing work activities is so difficult with chronic illnesses. no one understands and im definitely not going to tell an employer for them to think i cant do the job
Great job! I've read your blog quite a few times but just happened to stumble in this while browsing TH-cam. I have epilepsy too but it's not intractable. I still understand the medication side effects and anxiety. Keep on keep in' on!
Thank you so much! I am glad you enjoy my blog as well!!
Having an invisible illness, it sucks
better than a visible one, though
bb not necessarily at least with a visible illness people believe you more often