She wrote an entire novel with no skin on her fingers – this Brisbane woman says that living with an illness is a battle others struggle to understand.
Brisbane author Talitha Kalago knows what it’s like to live with a chronic illness.
The writer, 29, contracted Steven Johnson Syndrome in 2008 which “is a very rare allergy like reaction where the body begins to eat itself. It’s a lot like having second or third degree burns, all over the body.” Here, she talks about her own experience and what not to say to somebody going through the same thing.
I don’t like to lie to people. I also generally don’t like to make people uncomfortable, unless it is productive in some way. Often not lying and not making people uncomfortable are at odds. Particularly when it comes to my health issues.
I don’t tell people I am ill unless it comes up. In most cases it would be easiest and most comfortable for the people I am talking to for me to lie. However I do not like lying. It makes me uncomfortable. I do not feel that I should be made to hide my condition for the sake of other people’s happiness.
Usually when people ask what I do, I say I am an author—which is a half truth and usually interesting enough that people focus on that. However, when pressed with more direct questions I will always offer the full truth:
“I am chronically ill. I spend much of my time too unwell to leave the house. There is a high chance I will relapse. There is a high chance that relapse will kill me. That could happen tomorrow. Or never. Either way, I am never going to get better.”
That’s the truth. Mostly, when people hear it from me, they hear it in the form of a joke. I turn all the pain and misery into a zany story and I encourage people to laugh with me. “My skin rotted off! Can I top that? What new and exciting symptom will I have this week? Stay tuned, to find out!”
This is good for everyone. It’s good for me, because turning it into a game is what keeps me alive. It’s good for other people, because it lets them ask questions without feeling like they have to act sad or comfort me and it tells them how to behave (laugh) in a situation they are unfamiliar with (self deprecating, terminally ill people). That said, as much as possible I omit the truth and the longer I can hide the fact I am a rotting sag of barely functioning organs, the better.
Recently, I was too ill to go to the Abbey Festival. Someone asked what I was doing that day and I expressed that my plans had been changed due to illness. They encouraged me to go anyway and I said that I would if I could, but I was unable. Cue a rant about their terminally ill relative, who still got out and tried to do things, even though they were sick.
Firstly, I genuinely hope it’s true and that their bedridden, reliant on morphine relative does get out and do stuff. Because that’s awesome and in the chronic illness community, you learnt to celebrate each other’s victories.However I wonder if that same relative knows someone is using their illness to bully other people? I am guessing no.
When I explained that I too was chronically ill and that much like their relative, I did do stuff when I can, but there was a lot of days when that was not possible, they said I had no right to be annoyed, as I had not told them about my condition. The thing is, if my ‘healthy’ friends cancel on me because I have a cold, I don’t say: “Oh boo, you whore. I’m an animated corpse. Suck it up, princess.”
When it comes to chronic illness, there are five things I would like to drill into people
1. It’s not a competition. No one ‘wins’ by being sicker. Trust me, if I could lose that competition, I would.
2. No one has a right to judge anyone else’s health. Not even doctors. Doctors should diagnose and treat. There is a special place in hell for judgmental doctors.
3. We should empathise with each other. We should not try and lord our superiority over each other. Also, nothing about being sick makes you superior. Suffering does not make you superior. Having to have someone else pour milk into your cereal because your hands are shaking does not make you a goddamn martyr. It’s sucky. I’m sorry it’s sucky, no one should treat you like less of a person because your life sucks, but You. Are Not. Better. Than. Anyone. Okay?
4. Carers are the best people ever and should be treated like celebrities. However if you use someone else’s illness as an excuse for your bad behaviour, you’re still a dickhead.
5. You don’t have a right to know anything about anyone else’s health. When people ask me I am happy to tell them because SJS is rare and I am all for people understanding and learning. But I don’t have to tell people I’m sick. If you look like an asshole because you didn’t know, that’s on you, not me.
Hopefully this cleared up any confusion you might have had about being a complete jerk around people who are chronically ill, or not chronically ill, but who are still alive and have basic human rights and feelings.
If you ask me how I’m feeling, and I say ‘good’ what I really mean is: ‘I’m in agony, but something else interesting has happened so let’s talk about that’.
Alternatively, I am lying because I don’t like you enough to have a conversation about it.
This post was originally published here, and has been republished with full permission.