Invisible illnesses: Not having the right words, yet
By Ng Qian Qian, Editor
We often lack the right words to capture the most complex phenomena. And when we don’t have the right words, we can’t capture it, convey it, and the phenomenon can’t get its footing in our conversations and currency of ideas.
But often it is the most complex of phenomena that require the most words, discussions, and attention. Think of racism and sexism. We’ve only begun to try and figure out how to talk about racism and sexism, but complex and troubling phenomena such as racial dating preferences are already begging for our attention: where do we draw the line between innate preferences and socialised choices? How do we acknowledge that no one has an obligation to desire anyone else, but also that our dating preferences are a political phenomenon?  And so more mental labour is needed to come up with the right words to capture these phenomena, so that we can continue to work through them.
Unfortunately, for people with invisible illnesses, the burden of finding the right words to encapsulate such illnesses is placed onto them. We need the right words, not just to discuss, but also to inform, explain, and justify. But those who need to use them don’t have them, and even have to carry this burden of coming up with them.
Two invisible illnesses: PSC & UC
Such abstract musings are very much an everyday reality for those diagnosed with invisible illnesses, like recent NUS graduate Anu.
Anu studied Computer Science and is a USP scholar and passionate filmmaker. She also has two complex, autoimmune diseases: Primary Sclerosing Cholangitis (PSC) and Ulcerative Colitis (UC).
We approached her to find out more about invisible illnesses and she shared with us about the two aforementioned diseases. Through her, we learnt that empathy and kindness can be hard to come by for such lesser known illnesses, compared to more well-known invisible illnesses like cancer.
Primary Sclerosing Cholangitis (PSC) is a rare autoimmune disease that affects the liver and bile ducts. It is a condition where the immune system ‘attacks’ the bile ducts, causing them to harden and narrow, preventing bile (produced in the liver and that helps to digest fat), ultimately causing scarring and liver damage. PSC has varying symptoms which include mundane discomforts like itching, pain and fatigue.
Ulcerative Colitis (UC) is also a type of autoimmune disease, as well as an inflammatory bowel disease, where the lining of the colon and rectum are chronically inflamed. PSC and UC are associated illnesses, where many people diagnosed with PSC also have UC. Similar to PSC, there is no known cure for UC, though treatment can greatly reduce symptoms, which can include fatigue, loss of appetite, urgency to use the washroom, joint pains, and so on.
The symptoms are largely invisible; to the less cognisant, a person with PSC and/or UC might appear to just be ‘lazy’ or unwell for the day. It is hard to tell, just by looking at someone, that they have an illness like PSC or UC.
But these common symptoms (like fatigue) have extraordinary causes. And for those with autoimmune diseases, the consequences and risks are severe. Many PSC patients undergo one or more liver transplants in their lifetime.
Reality is doubly cruel: those who have invisible illnesses often have the least energy and resources to find the aforementioned ‘right words’, yet they have and are expected to.
Those who have invisible illnesses also need these words the most, to seek understanding and broaden both individual and institutional awareness. Yet they don’t have the words yet, and so bear the consequences of the ignorance of physiologically healthy people.
Diagnosis, and finding the right term(s)
Even clarifying the problem for oneself is difficult, especially when the illness is rare and not well known. Recognising for yourself that your common ailment could be a symptom of a more pernicious problem might not be easy when you’d never imagine yourself to be unhealthy. And how could you imagine having a rare illness that you’ve never heard of?
Diagnosis becomes a tedious process. It takes a long time and involves many tests. Chances are, both you and your doctor(s) don’t know what illness you’re looking for. For Anu’s ‘relatively fast’ process of getting her PSC diagnosed (within 6 months since the first doctor), more than one doctor referred her to other specialists in cardiology, ENT, rheumatology, and neurology, just to name a few. And each specialist cleared her, telling her they couldn’t find anything wrong. But something was certainly wrong.
Diagnosis is also a social process. Getting doctors to treat your seemingly common ailments seriously is yet another hurdle. Many of the doctors Anu went to did not treat her only symptom at the time seriously, which was high levels of fatigue.
She recalled receiving many well-meaning lectures on sleep, nutrition, hydration and the like, to the point she started believing the ‘overworked college student’ narrative: “What if it was all just in my head? What if there really wasn’t anything wrong with me? I was young and likely healthy.” A person could easily give up searching for a diagnosis.
But diagnosis is crucial: “To not have a diagnosis is to not have a legitimate reason for being unwell. It is to live with uncertainty for yourself and even more doubt from others.”
Prolonged uncertainty is hard to quantify, and repeated discrediting of your knowledge and ability to know can become defeating. Having the right diagnosis also allows a person to be able to seek help, online, from books, or in person via conversations, and so to better physiologically cope with their symptoms.
Speaking without words
When a person does not yet have a diagnosis, they probably have to deal with confusion and self-doubt about their vague, but very real, symptoms. And with largely invisible and less well known illnesses like PSC and UC, there tends to be a lot of external doubt that only exacerbates the self-doubt an ill person feels, and makes the uncertainty more unbearable.
Empathy is rare, and Anu acknowledges that it can be difficult to express. But the demandingness of expressing empathy is no excuse for the healthy to not try: “It’s difficult to be empathetic when you don’t know what’s wrong but know that the process itself is trying.”
Words connect one person to another, and those who are less cognisant might not know that a person has PSC or UC if the person does not share. But when this person can’t meet internal project deadlines because they’ve been struggling to even sit up, even uttering words can be a laborious task, what more when words only sound like excuses.
Sharing about a complex condition such as PSC is a difficult task made more laborious precisely because there are no apt words that succinctly capture systemic problems and common symptoms associated with the illness. To make up for the lack of apt terms, more words are needed, more personal scenarios illustrated, more similes employed, etc. And sometimes, that labour of explanation is not worthwhile; those with invisible illnesses might simply bear the cost of being written off as a bad friend, a lazy person, and so on.
And even when a person with a complex and invisible condition chooses to share about their illness, they could be suspected of overplaying the severity of their illness. Anu tries to convey the multiply tricky terrain of sharing about PSC, and shares that it remains a lose-lose situation for her to speak about it: “I do hope to someday figure out a way to share about my illness with others in person without being judged as like a pity-seeking needy whiny patient in need of a hefty dose of ‘get over it’ drugs.”
The listener’s reaction is important, and someone who does not know how to react and appears disinterested might give off the impression that they feel the sharer is overplaying the severity of their illness, even if they do not doubt the person who is sharing.
Or the converse could occur, where the listener possibly over-reacts. The person with PSC is then made to feel responsible for their discomfort and sadness, and might have to first cut short the conversation, leaving them with inadequate knowledge about their condition and why they may choose to do or not do certain things. It also then imposes a second labour onto the person sharing about their illness, to have to comfort the listener.
Learning to listen
One way forward, Anu suggests, is to suspend judgement: “It’s entirely possible [your] friend is lying to get out of work or hanging out with you but again, most of the time it costs nothing to just choose not to doubt them. You really can’t know what someone is going through.”
Listening without judgement is underrated. And whatever the costs of learning to listen well, it probably can’t be more than having to live with the physiological, monetary, emotional, and social costs of invisible illnesses like PSC and UC. Furthermore, the benefits of choosing to believe your ill friend’s story could lend them a palpable boost of faith and comfort amidst a sea of doubt, including doubt from themselves.
If you do get to strike a conversation about their illness with them, mirror consent. Hand them control over how they’d like to talk about their illness(es). Ask them whether you could ask questions, and more questions. Show interest by asking more questions. But remember to be sensitive to the emotional changes in the person speaking to you. The key is to ensure they share in a manner they’re comfortable with.
A final tip from Anu is to not show pity. It is difficult to strike a balance between showing enough interest, and not overreacting to the point when you impose additional responsibility to comfort you onto the person sharing about their complex illness. But you’ll have to trust your human instinct, and trust that listening well and mirroring consent are skills you’ll get better at with more practice (and you can practice in many other conversations, not just with a person with an invisible illness).
Responsibility without blame
The fact is that only people with complex and invisible illnesses will know how truly complex the condition is, and each person’s experience might be different from another’s. In other words, the responsibility to first come up with words to describe their situation inevitably falls on the shoulders of those who are ill.
But this responsibility ought to be shared, and they should not be blamed for failing to come up with the right words. Coming up with the right words is a laborious task, and it can be more productive to consider how those who are ill have more burdens to carry, including this unshirkable one to develop the right words to share about their plight. We share a responsibility to come up with these terms by creating more spaces for them to experiment and find the right words.
And these safe spaces will also allow those who are ill to go through the tedious and uncertain process of diagnoses with less (unnecessary) doubt from those of us who simply cannot imagine or understand what is actually happening within their bodies. And hopefully at some point in the future, when conversations about these specific illnesses are more frequent and the spaces we occupy less judgemental, even seemingly healthy people will be encouraged to go for check-ups and various diagnoses (where it is financially possible).
Conversations are two-way. So it is also up to those listening to listen well: to hold space for the speaker to share without fear of judgement and doubt, to mirror consent by asking if they’re comfortable to share, to actively listen by reformulating and checking if your understanding is adequate.
One way we can institutionalise kindness and empathy is to improve accessibility. Anu suggests that schools can create an office for students with disabilities, offering consultations and services to ensure that education is accessible throughout the academic year, while workplaces should ensure employees feel comfortable sharing their challenges, to do so on the employee’s terms, rather than forcing them to declare their disabilities.
And to those with invisible illnesses, or difficult conditions inflicted onto that can’t be outwardly detected, Anu’s advice is to actively reflect. Moving towards a kinder culture, and a more inclusive culture where people’s diverse abilities are accepted without excessive justification, requires kindness from both parties. Those not suffering from an invisible illness currently need to put in more work to educate themselves. But it is important to extend the same kindness to others who are also struggling with big but different problems.
Our first step towards more kindness and empathy, though, is to treat peoples’ words and problems more seriously, and to suspend judgement and doubt, especially with an invisible illness that doesn’t have the right words to encapsulate it, yet.
This article is based on an email interview between The Convergence and Anu, conducted between January and May 2021. Anu has been diagnosed with Primary Sclerosing Cholangitis (PSC) and Ulcerative Colitis (UC), and has just graduated from NUS Computer Science + University Scholars Programme.
Qian Qian and the team at The Convergence would like to thank Anu for taking her time and energy to share her story with us. Find out more about Primary Sclerosing Cholangitis (PSC) on the PSC support website. Read the original interview with Anu here. Check out Anu’s Facebook post on PSC here.
Qian Qian is an editor for The Convergence and honours student in Political Science minoring in Philosophy at both the NUS and ANU, and hopes to safely complete another 2 years in NUS Political Science.