Talking About It

Hello friends and family! Happy spring! The change of the seasons is always one of my favorite times of year. The clouds go away, the sun comes out, I feel lighter as I manage only depression and not seasonal depression, the flowers bloom, the birds sing.

This change of seasons comes alongside a change in my personal seasons. I have moved! I am currently in Jeonju-si, a city about 3 hours south of Seoul, and now I am working as a full-time English teacher! Work can be exhausting and difficult as company environments differ greatly from those in the United States, but I love my job and my kids make it all worth it.

I wanted to write this update on a more personal note. (I know, I know. How on earth can there be a ‘more personal note’ when this is literally a blog where Alex spends time discussing the most intimate details of her chronic illnesses to an audience of strangers on the internet. Fair point.) Today a coworker said some things to me that I want to address, as I realized that I cannot be the only Spoonie to have heard it.

I won’t bore you all with the verbatim of our conversation (also because I can’t remember how we even got to this subject…) but what stuck out was this: he said that himself and my other coworkers were offput by my frank mentioning of chronic illness. He told me that he felt I was making it a competition, that everyone is sick in some way so it’s not special, and that it’s something I should not mention until I really know someone.

I’ve spent most of the day thinking about this. I’m annoyed, angry, hurt, and frustrated, and as I spent time imagining an alternate universe in which I kicked him smartly in the shins instead of letting him finish, I realized that a lot of people feel the same way as him. So, I’ve decided to use this platform, this community of Spoonies, to address these comments and remind my fellow warriors that you’re not alone.

Let’s start with the first part: He felt I was making my illness a competition. Ultimately, his feelings about my conditions are irrelevant, but I want to discuss the deeper meaning behind these words. Chronic illness is not a competition. Those of us active in the Spoonie community recognize that this idea of someone being ‘more disabled’ than others is a way to polarize and separate us, force us to compete for healthcare and resources that society has convinced us are scarce. Some of us might need to use different tools for accessibility, such as a wheelchair or special diet, but that does not mean that any of us are less sick than others. All of our experiences are different, and all of our experiences are valid.

(I should mention that this coworker suffers from Chrones Disease, so I believe he was speaking from a place where he felt he must justify his own illness. It is sad we live in a world that made him feel this way, instead of in a place where we could recognize allies and friends.)

Part two: Everyone is sick and I’m not special. This I agree with. That’s exactly my point. There are so many people in this world who suffer from chronic illness, who live with invisible disability, but no one is talking about it. We are silent when we should be screaming. Of course I’m not special, and that’s fucking terrifying. We should not be quiet about the rising numbers of people who are sick, in pain, dying. We’ve damaged the environment and are damaging ourselves. There are way more of us than people realize, and we cannot realize just how staggering the numbers are unless people speak out.

Part three: I should wait to mention my chronic illnesses until I really know someone. When my coworker said this, he explained that many of our coworkers (himself included) were not sure how to react. They didn’t know what to say or do, so they felt uncomfortable.

Well, I’m so sorry that my life altering illnesses make you a little uneasy.

I do not discuss my illness in detail with people I do not know well. My usual introductions to people do not go “Hi, I’m Alexandra, let me tell you about this weird digestive side-effect of one of the many medications I take”. (Though at this point, the petty side of me really wants to jump right into work on Monday and spend all my free time telling everyone the nasty, gory details of life with chronic illness, just to really give them something to complain about.)

I do mention my illnesses, same as people mention that they need a haircut or want to get new glasses. The sky is blue, the grass is green, I am sick.

Chronic illness is extraordinarily stigmatized, especially when you don’t “look sick” (more on this particular statement in a later post). But that is why I talk about it. That is why I am open and honest and unafraid to loudly mention that no, I will not be drinking with you tonight because I can’t have alcohol with one of my medications.

In the United States, my generation and the generation after me has become very open about struggles with mental health. There are entire meme formats dedicated to things you say to your therapist, and I love it. We should talk about these things because society’s previous silence was killing us. But we were not always so open. At one point there has to have been someone who spoke about their experiences in therapy or their struggles with mental illness and was the first to do so. I’m sure they made people uncomfortable. People thought they were speaking out for attention or else to cause strife. But those short moments of discomfort allowed entire generations to speak up, loud and proud, and discuss a virtual epidemic of mental health issues.

So, when I speak openly about my chronic illnesses, when I mention that I can’t do something, won’t do something, or must do it differently due to my health, yes I know people are uncomfortable. But I’m not going to change.

I cannot control my illnesses, nor can I control people’s reactions to them. But I can control how I respond to people. And I am so tired of this expectation that I should change myself or my habits to ease others’ conscience.

I refuse to sit still. I refuse to be quiet.

So, thanks for the opinion Jared. But I’m good.