The burden of articulation

I was discussing my health problems, somatic and psychological, with my therapist, and after a few minutes she looked at me with a frown. “In the three years I’ve seen you, you’ve shown a lot of avoidance to uncertainty. Why do you need to label what’s going on?”

At that time, my mind drew up a blank. If I could go back in time, I would respond: how do I explain to you so that you understand that I don’t particularly care about the labels, but that other people demand them and will only listen when there are labels?

Part of living with invisible illnesses is that because others cannot see what is going on, the burden then falls on us to articulate our illnesses. And so often, others are not satisfied by our articulations until we can describe whatever we live with using Proper Names that have been validated in the name of science or perfect linear logic.

For example, I’ve always hated doing “physically risky” things—the quotes are there because many of the things I consider physically risky, like trying roller blading or snowboarding, are not things other people consider physically risky. My whole life, my friends and family would roll their eyes when I would refuse to do what they thought were simple if not fun activities. I heard “Stop being such a drama queen,” “why are you so uptight about everything,” and similar things for so long (and I internalized them, but that’s a discussion for another time). My discomfort, anxiety, and fear were not enough.

What I didn’t know how to articulate, and what took me twenty six years to learn how to articulate, is that because of my hypermobility, I am easily injured. For four years, I twisted at least one of my ankles every other month kind of easily injured. Walking down a slight slope in rain can cause me to injure my knees or ankles or both kind of easily injured. I have overly stretchy ligaments and tendons, the cause of which is still being investigated. So yes, I hate trying any new physical activities and no, I am not overreacting.

Now that I can articulate how my physicality has shaped my thought process and behavior, people sometimes respect my dislike of trying new physical activities.  

Learning to articulate invisible illnesses is hard and requires a lot of trial-and-error, and as you struggle to figure out the “correct” language, you inevitably come off as a hypochondriac, or in the current language of clinical psychology, as someone with “serious health anxiety”. At the beginning of the session with my therapist, I mentioned that I had experienced elevated mood the previous week. Hypomania, maybe? She looked at me over her glasses with that look in her eyes, and corrected me: what I had was not nearly severe enough to be called hypomania; the terminology for it was cyclothymia. When I mentioned how I thought I had OCD, she corrected me and said that I have OCP, not OCD. She ended the session by stating that anxiety is a serious issue.

What I wanted to say to her but couldn’t yet articulate was that yes, I have “health anxiety” because a lot is going wrong with my body and there aren’t many clear answers. No, I am not trying to make my health problems seem worse than they are. I just want the words to describe what is going on with me because other people expect me to have those words.

The burden of articulation is not something I enjoy, and articulating my illnesses with names isn’t something I want to do. I don’t feel special for having “an identity” built on these names or whatever, nor do they help me understand what is going on with my body. But to get other people to understand and to access the resources I need, it is something I have to do because it is expected of me.

The burden of articulation is a heavy one that requires a lot of work, but like our illnesses, it is work that is hidden and invisible.

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The racialization of illness; or, who gets to be sick

Being sick as a queer person of color isn’t simple. Doctors and medical professionals tell me that my symptoms and health problems confuse them because of how they distinctly impact my life but lack the intensity to fall neatly into the little boxes modern medicine has outlined for various disorders (that are more often than not based on white bodies).

Each time I hear them say this, I know that this is half of the truth. Trauma has marked most aspects of my life, and with that comes an impact on my health that can mimic or veer towards the territory of established syndromes.

But the other half of the truth is that often because of my race, people aren’t looking, even when the answer is obvious.

I have many of the hallmarks of OCD, the ones that aren’t popularized by the media: a consistent struggle with an eating disorder, perfectionism that scores in the 99th percentile, hoarding tendencies, a frenetic focus on doing things for the sake of having to do them. For most of my life I have joked about my OCD, and within of month of being together my partner began talking at length about how I needed to get my OCD treated. Yet medical health professionals haven’t flagged it until recently because I’m Asian and Asian cultures “value perfectionism” or something. The same goes with my hypermobility. I’m fairly certain I fall somewhere within the Hypermobility Spectrum Disorders, yet my hypermobility has more often than not been explained away as “Asians are more flexible”.  My body’s other idiosyncracies that are probably linked to my hypermobility (rampant eczema, a high roof to my mouth, soft teeth, poor eyesight, inflammation of my chest joints, and so forth) have been waved off as odd variations in human biology.

To be diagnosed with any sort of illness, doctors have to think that you’re fragile, but not too fragile. I’m still trying to figure this out in relation to my race: it’s clear that society thinks of white women as fragile and black women as strong (and therefore capable of enduring pain), which impacts the kind of medical care white women receive versus black women. What does society think of Asian women’s pain, illness, and physical constitution?

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The boringness of chronic illness

There’s a tendency, especially by able-bodied people, to frame chronic illnesses as tragic and life-altering—the former is debatable, and I can’t speak to the latter as I’ve always lived with the symptoms of my chronic illnesses. But if I had to sum up my experience of chronic illness into one word, it’d be:

Boredom.

Sheer, utter, monotonous boredom.

(Although, the slightly tragically funny part of boredom is that it is a stone’s throw away from depression. But on that some other day.)

Waiting around in doctor’s offices every week is boring, unless you enjoy watching a random episode of Married At First Sight. Waiting for your blood to be drawn is boring, unless you have a panic attack at seeing and feeling the needle pierce your skin. Waiting for your medication at the pharmacy is boring, though at least you get to people watch. Waiting for a pain flare to pass is boring, though pain is pretty good at keeping you preoccupied. Waiting for your energy to return—just plain boring.

On average people have about ten hours of useable energy per day; I have about half that. Which means that I spend a lot of time lying in bed flicking back and forth between Netflix, YouTube, my favorite celebrity gossip sites (that’d be laineygossip.com, which I highly recommend), Facebook, Instagram, and half a dozen other things without actually watching or learning or doing anything. I always tell myself that I’m going to learn something new or do something different, but I never do because that requires energy, or that I’m going to spend that time thinking, which I also don’t do because that also requires energy.

Recently, a work colleague was talking to me about his money problems. Despite the fact that he makes good money, a solid income that multiplied by two minus no kids would put him and his fiancée in the top five percent of the Australian population, they have trouble saving. He asked me how do I do it. How am I so good with my money? When I go out to eat and wander around in the stores, how do I keep myself from buying stuff?

Simple, I told him. I don’t have the energy to go out after I get home from work. And after groceries and my mortgage, the thing I spend the most money on is doctor’s bills. He stared at me for a few seconds before asking, so do you go home and go to sleep at like five in the afternoon? No, I told him. I just…watch a lot of videos and read a lot of internet articles?

He stared at me again, this time for a bit longer. And what about the weekends? When I looked up at him, he seemed genuinely concerned. Um…I lie around and rest in between chores? He continued staring at me, either because I’d just blown his mind or he was trying to decide how to judge me or both.

Sometimes I notice that because of the boredom of chronic illness, I’m becoming a boring person in the eyes of able-bodied people. I have no hobbies, unless you count learning about my body and doing yoga everyday to prevent it from falling apart even more a hobby. I wake up, do some yoga, (barely) make myself presentable (and most days I don’t even do this), go to work, come home, and go to sleep. Whenever I mention to my able-bodied friends that I don’t have the energy to go to do the things they do for fun—talks, community workshops, pottery or dance classes, shows, movies, shopping—they do that thing of staring at me for a few seconds before moving on.

Is that tragic? Maybe, in the eyes of some. But mostly, it’s just…boring.

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The time frame of chronic illness; or, what is crip time

What is time to a sick person?

Isaac Newton is the most famous philosopher and scientist who subscribed to the idea of absolute time, where time is a part of the structure of the universe and passes uniformly regardless of what is going on. Other philosophers, such as Immanuel Kant and Gottfried Leibnez, emphasize that time is not fixed because it is a construct that we have created to help make sense of the world.

Nothing quite illustrates the tensions in how we understand time as having a broken body.

My time as a living human being is fixed. I will age, I will grow old, I will die. Yet as I’m alive, the time frame in which I live differs from most other people. I’m not able to do most things that “people my age” can do. The few things I can do, I’m not able to do them as fast or for as long as “people my age” usually do. I’m not able to push myself hard on my career trajectory like “people my age” are supposed to do. What progress I do make occurs at a different pace; that which is measured in weeks or months for “people my age” becomes years for me. I am painfully aware of how my peers are leaving me behind as their time speeds past my time.

Slow and steady wins the race. I am reminded of the irony of this when each time I try to live in time with “people my age”, I end up bedridden. So I plod along using baby steps. (Also called pacing, according to the exercise physiologist who I have been seeing to learn how to manage the symptoms of my chronic illness). What I am able to do is pace myself so that I do one thing a day: a list of chores, meetings, and events that “people my age” finish within a day takes me a week. No matter how slow and steady I take it, others zip past and continue on. A pace as slow and steady as mine wins little in the race of life. People often talk about “losing years of their life” to chronic illness.

But that is not to say that in my time any less change happens; if anything, the number of changes you notice increases when the time frame is drawn out. Like watching a video in slow motion, you are able to perceive detailed shifts that go unnoticed by others. In the last two years, I’ve gone from being physically active to being sedentary, and this change has made me more aware of my body compared to my peers. I’ve watched friends fall away little by little; though it may seem to them that I disappeared all of a sudden, I am acutely aware of how our conversations petered out. Each time I go to the doctor’s office, I can tell which magazines are new and which were there during my previous visit a couple months ago. At a societal level, you become painfully acquainted with how a capitalist society is built to exclude.

Able-bodied people rarely understand how fixed time can be relative. While my peers are measuring time in terms like one year to promotion, going out on Friday night until two in the morning, and dating someone from Tinder for three months, I have my own ways of measuring time. It’s been twenty years since my symptoms have carved a space in the back of my mind, thirteen years since some of them became an issue, three years since the rest of them began bleeding into the forefront of my consciousness, and one year since I could no longer ignore them. I take painkillers four times every twenty four hours to help make the pain bearable (not until there is no pain, is that even possible?). Starting three years ago I’ve been seen medical professionals at least once every other month, if not every other week. I’ve been going to the exercise physiologist for the past seven months and properly pacing myself for six, and because of this it has been six months since the last time I was bedridden from some combination of mind-numbing pain, fatigue, and depression. I arrive fifteen to thirty minutes early for most medical appointments. I rarely go to events that end past nine in the evening. While I hide most ways I tell time, the last one is one my friends know all too well. They used to joke that I have the habits of a grandma, but those jokes have dropped off as I’ve stopped laughing to them.

I’ve been told that I’m “too young to be this disabled” and that someone my age should be able to recover to rejoin “normal” life that goes at a “normal” pace. But some bodies are broken, and it’s not that I can’t do things. I just can’t do them in the time society expects them to be done. My body cares little about the time I’m supposed to be on; my body will take the time that it needs. As Alison Kafer notes in Feminist, Queer, Crip, “rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds” (27).

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How to talk about living with an invisible disability

When you disclose chronic illness to others, one of five things usually happens (or, if it’s your lucky day, all five in a row like a royal flush):

  1. awkward silence;
  2. “What causes this? Are you eating right and exercising?”;
  3. “Oh, I know (someone of distant relation) with similar issues. Have you tried (some diet, usually vegan or paleo, or some product, usually weed, or some exercise, usually yoga)?”;
  4. “Oh yeah, I feel (pick one symptom) too, but you just can’t let it slow you down”;
  5. “It could be worse, at least it’s not cancer. You have to think positive!”

Five deep breaths to remind yourself that they mean well.

What strikes me about having an (sometimes not-so) “invisible” illness is how often evidence and explanation is needed. You are not sick until you provide the history and justification for your condition. You must establish a body of knowledge around your illness. Despite the fact that everyone gets sick—really sick—at some point in their lives, to be truly sick it needs to be made visible to others. Yet no matter how much evidence or insight you provide, it is never enough. Implications that you could be doing more to fix yourself always linger.

This is not limited to interacting with able-bodied people as a spoonie, or a person who lives with chronic illnesses that significantly impact their lives. The need to articulate and perform disability occurs within the community. Several months ago I was at a professional development opportunity for disabled people, and most of us in the room lived with chronic illness. As we introduced ourselves, one of the first things people mentioned about themselves was how and why they were disabled. Attending this event was not enough to confirm disability; our disabilities had to be labelled, categorized, and given a history in order to be validated. When it was my turn, I didn’t say anything about my disability. Those introducing themselves after me also didn’t, as though my lack of disclosure gave them permission and signalled that yes, we can trust that we’re here in this space for good reason. We can trust that our willingness to be in this space, to be labelled as disabled and to endure the shame of admitting that we need this space, is enough evidence.

A similar code of conduct is observed in online platforms such as Instagram. When looking at accounts that post to #spoonie, individuals tend to list in their biographies their illnesses: Lupus, hEDS/JHS/HSD, CFS/ME, Lyme disease, fibromyalgia, IBS, IBD, Crohns, colitis, POTS/OI, MS, COPD, endometriosis, and so on. Why communicate and articulate chronic illness and disability in such a way? The burden of proof in online spaces is compounded for spoonie communities. For example, to gain entrance into Asian American online spaces, my profile picture and name are usually enough proof. Some groups may ask me to answer a few questions to judge whether or not I “feel” like a good fit. Every now and then someone who is not Asian American enters into these spaces with a stolen photo and fake name, but other users realize fairly quickly when their “feel” does not match the “feel” of being Asian American. However, many spoonies are not visibly ill, which adds to the pressure to prove one’s place in the space. If someone doesn’t look chronically ill, how can we tell? How do we know that they are not lying? Medical diagnoses, despite the fact that they often fluctuate and are inaccurate, function as basic proof like a profile picture would. Labelling a physical body’s various functions is the first step to providing a “feel” to the corresponding digital body that mimics the physical body as proof to others of one’s conditions.

If you ask any spoonie about what it feels like to live with chronic illness, what sensations they associate with their chronic illness, there are a lot of clear answers. Some would describe crushing fatigue and pain that feels like a mixture of the flu, a hangover, and strenuous exercise. Others, extreme dizziness and elevated heartrate. Random rashes. Hands that were once steady but now tremble. Extreme clumsiness and tendency to run into walls. Brain fog so dense that it takes over two minutes to read, comprehend, and remember this sentence. A gut that never digests food properly. (For many of us, all of the aforementioned.) The list goes on. But how many of us have received a diagnosis that accurately reflects what is going on with our bodies? That list is much shorter, more so if we excluded those of us who did not have to advocate to receive accurate diagnoses.

We use these labels to describe ourselves to others because they’re easier to understand, but being disabled from chronic illness is not an inherent quality to our bodies. It is a judgment passed on our bodies by others. Variation is a biological fact about life, but our variation, in this society, is deemed undesirable. No amount of explaining from one person to another will change that paradigm that until how we, as a society, view chronic illnesses and disability shifts.

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Being disabled.

Dis-: a Latin prefix meaning “apart”, “asunder”, or “away”.

Ability: as a verb, to have the means to do something; as a noun, a talent or skill.

Disability: our bodies have wandered away from their expected capacity of performance. The bodies we live in are unruly, and our inability (sometimes read as a lack of skill or effort, such as not trying hard enough to eat the right things or exercise the right way or see the right doctors to obtain the right medication) to control our bodies sets us apart.

How does living with disability inform a person’s perception of the world and and the world’s judgment of them? How does the embodiment of disability change our connection to time, relationships, work, morality, and so many other things?

This blog is dedicated to how disabled bodies, in all their unruliness, disrupt the world.

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