The Hell of Chronic Illness | Sita Gaia | TEDxStanleyPark

Translated by: Hanna Vandenberghe Reviewed by: Peter van de Ven Did you know that one in three people suffers from at least one

chronic

disease? If it's not you, then she is the person sitting to your left or the person to your right. A

chronic

disease is an

illness

that lasts more than three months and for which there is no cure through vaccines or medications. You know countless chronic diseases: diabetes, heart disease, arthritis, fibromyalgia, epilepsy. Etc. I have epilepsy. Uncontrollable and persistent seizures. I can suddenly freeze and fall to the ground (snaps fingers) out of nowhere. Or I daydream and stare into space, and if you're in my line of focus, you might think I'm trying to seduce you. (Smiles) That's not true. (Smiles) Sometimes I can also do strange, repetitive actions, like picking up things and putting them in a bag.

It doesn't make sense, but that's part of the attack. I would like you to sit here and absorb it, feel it, and ultimately respond in a useful and helpful way. I have fallen several times on concrete and cement, resulting in a concussion. I also burned the top half of my chest with hot tea. This culminated in four months of dressing changes and morphine. Two years later, the burn is still healing. Finally, I needed a root canal and a crown because I fell face first into the rocks. I won't tell you what tooth it is. (Smiles) I'm not the only one who has physical problems.

At one point I was with my friend Jordan and he has type 1 diabetes. Luckily, my mom was there and she noticed that his blood sugar levels were very low. We called the emergency services and if we hadn't she would have almost gone into a diabetic coma. I also have two friends who were hit by a car last year. One of them is visually impaired and the other now uses a scooter due to the brain injury he suffered. If I have a lot of seizures in a short period of time, I lose a lot of my short-term memory.

This sucks, (smiles), especially when I'm trying to accomplish something. And it can also be embarrassing when I'm trying to have a conversation with someone. I don't know where I started and where they ended. A case of age-related forgetfulness? Then I'll start early. I also feel very tired. Sometimes I need to sleep for three to four days. This fatigue is added to the medications I take. You know, you've seen the drug commercials. The side effects are very long-lasting. It's too crazy for words! With a chronic

illness

, depending on your illness, you may also have to say goodbye to a lot of things.

Do you have a heart condition? Say goodbye to rock climbing with your friends. With a chronic illness you live in a world of loss. Now that I've painted a picture for you of what it's like to deal with a chronic illness on a physical level, let me show you what it's like to live with emotional and mental health issues. I was overcome with fear and didn't leave the house for a whole week. That's long. I have also fallen into a pit of despair and depression, not knowing where I was going or where I would end up, and feeling like a complete failure.

I've seen this in other chronically ill friends as well. So if they see someone isolating, I tell them to reach out and talk to them. Talking to them shows them that you care about them. Help according to your options. On top of all this, the icing on the cake is how people treat you based on your chronic illness. For someone my age, the challenges of dating are great. I'm usually honest about my epilepsy when I meet someone for the first time. They usually act very well about it. "Do you have epilepsy? No problem." "Attacks? I've seen it in the movies." But sometimes people can be rude.

I went on a date once and it seemed to go pretty well. We were sitting in a restaurant talking and decided to walk along the water. We weren't really talking about anything concrete and we arrived at a pedestrian crossing. We reached the intersection and as we crossed, boom! I had a seizure and fell on my face. Now he had taught that person what to do as first aid. The first thing I told you: stay calm. So when I came out of the attack two minutes later, I got up and stood up. "I'm here. It's okay." He was calm, but very anxious.

I could feel it. I regained my composure and he said, "Well, I don't think we're going to have a third date." Excuse me?! I was hoping you would have at least texted me this after we said goodbye. (Laughter) (Applause) That would have been a little more discreet. So, in addition to accepting other people, you must accept your own chronic illness. Acceptance is the challenge for the chronically ill. And no, this doesn't happen overnight. It can take years and sometimes a lifetime. Acceptance leads to ideas like: What does this mean for me? Will I find a partner?

I will have children? Will I be able to raise those children? Will I find a job or live in poverty? These thoughts can be very overwhelming and consume a lot of energy. Furthermore, as children we are taught to “Dream big!” "What do you want to do when you grow up?" I knew I wanted to be a social worker since I was ten years old. I don't know what it will be like for you, but for me it's a long time. I am a licensed social worker, but I don't know if I can do what I want to do in my vision of practice.

I also have a good friend, Vanessa, who was a competitive dancer. She then developed arthritis. She had to completely change her 'life path' due to a diagnosis for which there is no cure. How would you feel if you had to give up your dream? I've given you a lot to think about about chronic illnesses and what it's like to live with them and all the things you have to go through, and you may be a little overwhelmed right now, but don't worry, that's why I'm here. My three-point plan is this: very easy; You can follow it like this.

First, accept that there is no standard. Everyone is different in terms of mental health, skills and well-being. Accept it and act accordingly. Because you too can be affected by a chronic illness at some point in your life. My second point of action is that you have to have empathy. You have no idea what people have to go through day in and day out. However, if you know, contact that person. Tell them, "Hey, I'm here for you and I'll do everything I can." My final point of action is: Consider this: Maybe someone's chronic illness is not their problem, but yours and society as a whole.

If we had a more inclusive mindset that included people with chronic illnesses, we could help people get out of the

hell

that is chronic illness. (Applause) (Greetings)