The Hell of Chronic Illness | Sita Gaia | TEDxStanleyPark

Sita's talk asks you to confront the issues surrounding chronic illness. She tells you firsthand about what it’s like to live with one and offers you a 3-point plan to help your spouse, children and co-workers with the lifelong challenges they experience with chronic illness.

[Dermatillomaniac]

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 🌼

[goddessvibes]

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

[isadore]

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.

[heatherhamilton]

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.

[mamabear]

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

[palakahlawat]

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.

[andy]

Being chronically ill and disabled is so hard and challenging, the mental health toll it's taking is overwhelming

[Me-hojf]

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.

[sjgqtcz]

"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.

[akankshamishra]

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💔💔💔

[cosmofoxplaysgames]

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.

[QueerCripple]

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

[lukaszprzek]

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.

[mysticalvibe]

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

[millicentevans]

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

[druoleary]

Some of us with chronic pain can't tolerate talking with others so visits can be hard.

[susanshaw]

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.

I gave up my dreams due to chronic illness but found new ones.

[grogan]

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!

[ip]

I've found that sadly most people don't care, especially when it's invisible.