Tag Archives: body

Passing for Well

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.

Fun with Irritable Bowel Syndrome

Long-term illness is an experience I could never fully understand until it happened to me. I’d always had random inexplicable stomach aches as a kid, but then nearly two years ago my body broke. For the three months before I could figure out what it was, I had diarrhoea approximately five times a day almost every day. I was always a bit nauseous, with a bit of pain, and pretty frequently in a lot of pain. Welcome to the magical world of chronic Irritable Bowel Syndrome.

Unfortunately, IBS is not a disease – it’s just a body not functioning too well – so it can’t be cured. Regardless of how strictly I diet, a wave of stress or hormones can have me incapacitated for days. But IBS can be managed.

I saw a whole bunch of doctors who gave me things that made it worse or had no effect, until I saw one who gave me a drug. I had to take it three times a day, and it stopped the pain. It was amazing. It did concern me, however, that it also stopped me from pooping at all. This was clearly not a sustainable solution. At the moment I thought I actually couldn’t take it for much longer, a friend recommended a naturopath. She told me what foods I couldn’t eat (all the fun things) and what I could eat (meat, veg, seeds, leaves). The diet made an almost instant change.

It’s hard for lots of reasons. My food bill almost eats up my entire fortnightly pay – for example, you’d be amazed how expensive the only honey and fruit free muesli on the market will cost. It’s also surprisingly hard to rely on others to keep you alive, due to guilt and self-loathing and whatnot. I should probably also mention the actual symptoms: I’ve felt a little bit sick at some point almost every day for over a year. It’s like your brain is drowned in nausea; all your thoughts are muffled and every action takes more effort. There is a haze between you and others; you can’t speak or joke as well, or produce work the way you used to, and you can see the change even if others can’t. It’s like watching your true potential slip away.

When I’m healthy I feel like my body is a part of me; it can express how I feel and who I am. The sicker I am, the more separated my body and my identity become. On bad days I look down at my body shivering beneath me, pain knifing through my stomach and waves of nausea crashing down, and it feels like my bones are fraying, and I think, Wow. Things are falling apart down there. It’s just kind of funny in that moment. And that’s when I know my body is not so much a part of me, but more of a wall between me and the world.

There’s a weird sort of loneliness in going to a party and not being able to share some chocolate with your friends. And a weird sort of loneliness in the fact that you know most people can’t understand because there are things about the illness that you can never tell anyone. My illness isn’t pretty. Someone once told me that no illness is beautiful, but I still feel that if all I had was the pain I wouldn’t be so ashamed of it. Whenever I have to tell someone that I have IBS, I always go bright red and/or want to cry. One time someone asked me what IBS was, and since I couldn’t bring myself to say, ‘Irritable Bowel Syndrome’, I ended up saying, ‘Lots o’ poopin’’ and nodding matter-of-factly. Quick thinking, Miranda. That sounds SO much better.

As an IBS sufferer I have become quite adept at calculating the likelihood that I will make it from one location to another without needing a bathroom. It can be quite a gamble. I make sure I don’t go anywhere for long if it doesn’t have an accessible bathroom. I also have numerous techniques for achieving audible privacy in various bathroom scenarios. I go to the furthest bathroom from people as possible, or hide behind the sound of talking at parties. In public loos I predict flush times and hide behind that noise, or (worst-case scenario), I just go for it and then don’t leave my stall until all the people who would know it was me have left. It’s freakin’ hilarious, but only in retrospect. I have to think about my bowel movement strategies far more than anyone should.

The disability access plan at uni is my best friend: It’s extremely hard to get a doctor certificate when I need to prove that I’m too sick to leave my house.  People understand. I hate the idea of disability stopping me from following my dreams and people allow me to keep going. And the truth is, people understand because pretty much everyone has a big crap thing to deal with, health-based or otherwise. Maybe we can all afford patience for weakness because we know it intimately ourselves.

IBS taught me that. Regardless of all the crap I go through to manage it, if you’ll excuse my choice of words, I can’t bring myself to regret the experience. I can live with this illness and that makes it a blessing. Because every day I manage IBS, I learn more about allowing myself to rest; forgiving myself for weakness; and understanding others in similar situations. I had a terrible diet and lifestyle before I got sick, and I don’t think anything short of illness would have persuaded me to fix my life – this illness will thus make me significantly healthier in the long run. It reminds me constantly to turn my priorities back to a focus on health and a more direct pursuit of fulfilment than my usual intense career focus. IBS has taught me just how strong I can be. Knowing that you’ll be okay regardless of some of the depths you can sink to changes how you live. I thank God for IBS almost as much as I ask him to help me through it. And when I think about it, I realise that most bad things rarely produce purely bad results, because we always learn from them.

So next time you think about that big problem in your life, I guess I just want you to know that it doesn’t make you weak. Every moment you still haven’t given up is a moment of strength. Second of all, while you’re alone in some ways, you’re never alone in every way. And finally, consider what good things your challenges have brought to your life. When you tell yourself it will be okay, remember how true that really is. It will be okay.

Rainbows and unicorns.