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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2 thoughts on “How to talk about living with an invisible disability

  1. I think because of how much we need to justify ourselves we automatically explains our illnesses in any community. On Instagram I list my illnesses because then people know what specific ones I’ll be writing about.

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    • This is something I’ve been thinking about a lot recently, specifically through the lens of privilege. Privilege allows people to do less work, and part of the work of being sick is needing to provide justifications.

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