Articles

The Hell of Chronic Illness | Sita Gaia | TEDxStanleyPark

December 7, 2019


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

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