For people with illnesses that are not always visible to observers, the concept of ‘passing’ may be quite familiar. For them it means passing as healthy under the everyday perceptions of their peers. Many of us have experienced passing from a perspective of race, sexuality, religion, or politics, and it is always for the same reason: avoiding prejudice. Managing long-term illness is a difficult task in many unexpected ways.
It’s important to question why ill people should choose to be inauthentic in their lives. Judith L. Alpert suggests in her work, ‘Loss of Humanness: The Ultimate Trauma’ (2012) that an ill person may find themselves excluded from various activities because they may be seen as a weak person who must be treated delicately; certainly not a person that one can ‘argue with, depend on, or treat as an equal.’ This makes them seem less desirable romantically, socially, and in a work environment. It’s logical to want to avoid this.
Long-term illness implies unreliability. In a job interview I take care not to mention my own chronic illness (unless asked directly) even though it has a huge effect on my life. While it is illegal to discriminate, employers can find other reasons not to employ someone if they believe the person will be a drain on the company. It’s in the nature of chronic illness to have to continue meeting the demands of your life regardless of how unwell you are, and I have a history of taking fewer sick days than most other employees. But the stigma surrounding illness is difficult to undermine.
Particularly when confronted with more severe illnesses, there can be a strange fear of even being around the ill person in those who are comparatively well. As Alpert points out, it is not unheard of for a medical practitioner to demand that a breast cancer patient should get a prosthetic replacement to ‘elevate the spirits of people in the doctor’s office.’ It is considered admirable to hide signs of our pain; R. Murphy states in ‘The Body Silent’ (1990) that ‘the person who smiles and jokes while in obvious physical misery is honoured by all.’
The reasons for passing can have a focus on the perceived needs of the ill person. Observers may support someone in their choice to pass because they don’t want to remind them of their suffering. For example, if someone is crying, many would assume that they are embarrassed by their outburst and try to support them in their return to a calm facade by changing the subject or making jokes. Often this is legitimately what the person wants. If the nature of long-term illness requires a lot of ‘soldiering on’, there are certainly days when someone even simply asking about your health will make this much harder. Because the moment someone asks about it you may cry, and you may not be able to stop crying. And you have shit to do.
Sometimes people with invisible illnesses also simply want to exercise their freedom to choose who knows about their condition. If I walk to uni hunched over, breathing loudly, pausing occasionally to lie on the ground in the foetal position to wait for a wave of pain to pass, I will probably feel compelled to explain my strange behaviour to the strangers who witness it. In particular my illness, chronic IBS, is one of many that are considered ugly and shameful because it affects bowel movements. I am not yet above that shame. And I don’t actually want to explain myself to the whole world, so I pretend I’m fine and the only reason I’m walking this slow is because I’m being leisurely today.
While passing is a practical solution for avoiding the results of social stigma, and while it makes getting through the day easier, it creates regular inauthenticity in your life. It might not sound like a big deal, but it has a huge effect on the way you feel, and creates discrepancies in how you understand yourself and in the way others will choose to treat you. In a way, you are lying on a daily basis. It makes you feel disconnected from the people in your life. You don’t know if they are friends with an incomplete picture of you.
You begin to take measures to pass automatically and lose your connection to the truth. You can lose your gauge of how bad your symptoms are until you’ve reached the point of collapse. Things get much worse than they should have before you could have noticed and taken measures to look after yourself better. It inhibits your connection with your body, which inhibits your management of the symptoms.
People are also less likely to understand you if you are deliberately distorting the signals you communicate to them about how you’re feeling. They are less likely to believe you when you try to explain how bad it is. They don’t know how to help you, and they will probably miss your signals in situations when you no longer have a choice but to depend on their help.
For the ill person, passing is an opportunity to find control in a situation that is entirely out of their control. They may not be able to get well any time soon, but they can at least have some power over how people perceive them. They can avoid some of the social disadvantages of having a long-term illness and they can feel courageous in doing so.
My dad told me recently that he was proud of how well I hide my illness. It could sound like he’s proud of me for hiding my shameful secret or something, but I think he really meant that he’s proud that I have found a way to cope and that I’m pretty good at it. From a practical, survival point of view, passing is a good idea for me. But if you choose to pass, it’s important to balance that by remaining authentic with a few people that you love and trust.
I find that most people don’t want to know about illness. Even if they brought it up, and I joke and I understate and I try to fit my explanation into only one or two sentences, they seem instantly bored or irritated. I don’t know if they think I’m making it up, or if they don’t think it’s as bad as I’m saying. But these days whenever someone tells me they’re struggling, I not only believe them, but I assume it’s probably much worse.