Living Human: Sustainable Strategies For Invisible Illness

For Diesel, my 160%, for Grannykins and my family, and for anyone

who has struggled. I am with you.

INTRODUCTION

The definition of invisible:

1a: incapable by nature of being seen, or not perceptible

by vision

1b: inaccessible to view, or hidden

2: of such small size or unobtrusive quality as to be hardly noticeable, or inconspicuous

From around the age of thirteen, I’ve been put in a box, a category, a tidy little pigeonhole, called invisible, and that is how I have felt for most of my life. In total juxtaposition to this label or perhaps in some ways defiance, I’ve gone on to live a life that’s the complete opposite. On stages in costumes, on music video sets, in fitness studios, founding a business, and quite often with a microphone thrust into my hands. And yet invisible is the word that still resonates with me at my core.

No, this isn’t intended to be a sob story, so please don’t put the book down just yet. Hang in there with me!

I’m a person with a whole life experience. Some of it may be just like yours. I get up out of bed, I put clothes on, I work, I eat, I watch TV, I exercise, I have relationships, I sleep (sometimes). But in some ways, my lived experience may differ from yours. And that is partially what I’m here to share.

You see, I face pain and illness a lot. They are close companions of mine. Yet I genuinely love my body. I respect her so much. She fights for me every day, and I for her, and together we have done some pretty awesome things personally and professionally. I’m not special, and as lonely as I have sometimes felt on this journey, I’m never really alone because there are millions of people around the world just like me. I spent years draped in a cloak of shadows and shame which was never mine to have worn in the first place. I am no longer ashamed of my reality. I am no longer hidden in the darkness. I don’t remain unseen, unheard, or unnoticed. I refuse to. I’m right here with you as visible as I have ever been.

I’m also a contradiction in terms: invisible and seen, introvert and extrovert, a happy soul who carries a lot of trauma inside of her. So I hope that along the way you’ll get used to this back-and-forth reality in which I am two sides of the same coin. It is also my hope that this little snapshot of my complex story (as we all have), these lessons that I have learned, often in the most bizarre and trying of ways, serves to help you or someone you know in some way. If not, hopefully, this will be an interesting read digested over a cup of tea, where you can reflect on this thing that you’re doing right now, living - having a human experience with all its awesome bits, crap bits, middle-of-the-road bits, painful bits, indescribable bits - and realize that every bit is actually a privilege. Being human, truly human, is an incredible blessing and a super power.

So let’s do this. Let’s be human together.

WELLNESS TIP: Meditate

Before you get started, take a moment to meditate.

Please take a deep breath in through your nose and out through your mouth, and keep repeating your breaths in this rhythm. With each exhale, I’d like you to bring your attention to your physical self; relax your body in any way that you are able to, perhaps unclench your jaw, drop your shoulders, soften your gaze, and just let yourself absorb the gravity you feel as it’s pulling you down towards the chair, the bed, the floor, the train, the tram, or wherever you may be right now.

After six deep breaths, let go of all of the focus on your breathing and allow your breathing to return to its normal rhythm. When you are ready, gently bring yourself back to the present moment.

Now that you have meditated for a moment and quieted your sympathetic nervous system through the power of your breath, you are ready to begin.

1

THE ORIGIN

Binary opposition: a system of language in which two theoretical opposites are set off or defined against each other. Life, to me, is much the same. I know good because I have known bad. I embrace joy because I have been hugged (read: practically strangled) by despair. I believe that for you to know why I move forward, why I am propelled instead of stagnant, you must know what once held me back. So let’s get the dark, icky root of my story out of the way, shall we?!

Let me take you back a couple of decades.

I’m just barely a teen, and for a long time I’ve been feeling truly and utterly sick. I am permanently nauseated and exhausted and the pain I am in seems to intensify daily. I don’t understand what’s going on with my body, and I’m now terrified of it. I’m actually terrified of my own body. Back when she let me dance (which I love) and act and do karate and play musical instruments and go to school uninterrupted, I really didn’t pay her much attention. I just thought she was normal, and we had a good relationship. But now, she and I are at total loggerheads.

I’ve been poked and prodded for months. I’ve been spending time in doctors’ offices pooping in cups (honestly, why are those cups so small?), giving blood, urinating in cups (can we please have larger cups, seriously?), having ultrasounds, participating in very awkward conversations about all my private body parts, and having doctors question me over and over and over again about my symptoms. They talk over me, at me, but never to me about what’s going on with my body. In fact, scarily, they don’t seem to know what’s going on, and that worries me a lot. They’re supposed to be the experts.

But here I am, back in hospital again, sitting in a pair of loose shorts and a baggy burgundy T-shirt that has the Ripcurl logo on it because, like most Aussie kids, I think surf brands are the peak of sophistication. Like all teens, I am very concerned with how I look. I have always been petite, but I am starting to look exceptionally gaunt now. Unprepared for this hospital visit, I have checked in with hairy legs, and I feel very self-conscious about this. Probably because this time, as I check into the hospital ward, I notice that I’m being watched like a hawk in a way that feels intrusive and judgmental. Every piece of food that goes down (and inevitably comes back up or out) is documented, and I am followed to and from the bathroom, down those long, sterile cream-colored hospital corridors with zero privacy. I pee and poop with the door slightly ajar and always with an adult nearby.

The bed rest I am told will be helpful for me seems elusive to obtain in the hospital. I am awakened every twenty minutes or so by a flashlight being shone into my eyes, so my blood pressure can be checked, and so that new bags of unidentifiable liquids can be attached to the tube and needle in my hand. Doctors and nurses come in and out in a steady stream and look at my body. They talk to each other about me, but they don’t actually talk to me. It’s as if I’m transparent or a ghost.

This isn’t the first medical trip like this I’ve encountered, and over the last year, throughout visits to hospitals, specialists, and doctors’ offices, I’ve heard so many variations of what supposedly could be wrong with me. Everything from It’s just a stomach bug, to It could be an ulcer, to It’s reflux, or It’s just stress, as well as the old classic There’s nothing wrong with you; it’s just in your head. The last one has been said more times than I can count.

When I check into the ward, I am given a blue sheet of paper with questions on it to answer for the medical staff. It comes with a chart that shows little faces in circles to indicate levels of happiness or unhappiness. I am asked to match what I am feeling to the corresponding face I associate it with. I am bluntly honest on the form. I am not in a good place. I am deeply upset and scared that this is the peak of my life and things are never going to get any better. I figure the more I tell them, the easier it should be for them to help me. All I want is an answer. I want to know what is wrong with me.

Once I have handed this form in, I am visited by a couple of doctors who ask more probing questions about what I eat and when, and question me vigorously when I mention I am in pain all over my body as though they are looking for a kind of proof I seem unable to provide. They look at each other as if they can’t compute my answers. You see, I was expecting this honesty of mine to help them find the logical answer to what was happening to me, but as it turns out, it seems to have steered them the wrong way. They’ve taken my sadness and fear and my inability to eat properly due to my pain and nausea to mean something entirely different from what I know it to be. The fun new label being thrown around, among others, is eating disorder, so when I’m being watched by the medical team, it’s actually more like spying. They don’t understand how much I have internalized my pain and sickness, how normal this abnormal situation has become for me. The more I have to defend myself, the warier I become of the medical staff. I feel betrayed by them, and I no longer trust them to help me. I don’t even know if this potential new diagnosis of an eating disorder was mentioned to my parents, but for some reason, I now feel like I have done something wrong and don’t mention it to them when they visit me. I don’t feel like a human being anymore. I am now considered sick. I am an annoying puzzle with pieces missing, a burden, a bother, a number, a patient, but definitely not human.

The assumption is I’m either doing something wrong or I am stressed. I don’t ever recall feeling as though the medical professionals acknowledged that I was suffering, very scared, and in need of help. I offer up a range of suggestions of what my sickness could be, primarily because I don’t feel I am being listened to, that I am not being taken seriously. But I am dismissed or questioned, and every insight I try to give about what is happening is overlooked. I am convinced that the medical professionals are missing the point—that I am the one living like this, and I know my body better than they do. I know what is happening is not normal and can’t be explained away with a shrug. I know I’m not making any of my symptoms up, but I also know that when I describe it, the list is so long that it does sound like a farcical script.

I know that when I rattle off the entirety of what I am feeling physically at times, the adults get this glazed look over their faces, their mouths seem to tighten up, and I can see that it bothers or frustrates them. When I say that my whole body hurts; that anything I eat causes me pain, vomiting, or diarrhea; that my skin sometimes hurts; that my eyes smart; that my mouth is constantly filled with ulcers; that my neck is so tight it feels like my head will snap off if I turn it; that the word tired doesn’t come close to the fatigue I feel; that my head pounds relentlessly; that there are so many types of pain going on in my gut that are new to me, ranging from sharp and stabbing to dull and cramping, that it feels like there is liquid fire in my throat and huge bulges that form in my stomach and move around and then disappear again; that I feel like I am starting to lose my memory or my mind, as I forget things all the time and feel totally out of control; and so many other symptoms . . . Well, you, too, might have a glazed look just by reading that list.

I am also sick with colds, sinus infections, and other viruses repetitively, and I seem to go from one illness to the next without a gap. My life seems like a cycle of visits to doctors’ offices where I am handed yet another prescription for antibiotics or told condescendingly that it is not that bad. However, all the standard tests they’ve run just don’t seem to add up to anything that makes sense to them.

I have done what was suggested—to press the button on the remote attached to my bed if I need help—because my stomach is as hard as a rock, swollen to the point it hurts to breathe, and the pain and nausea are intolerable. I am in relentless agony, and each time I let them know something is wrong, I am told I am constipated, or too stressed, or too young to be having these symptoms. Furthermore, I am told that I should be drinking more water and trying harder not to let myself become upset. All of the other pains I report seem to be ignored as irrelevant. It seems that, no matter what symptoms I face, they are my fault or I am too young to be experiencing them, and apparently, I should know this already.

I am aware that I am a difficult puzzle that the doctors need to solve, and as my symptoms can vary from minute to minute, I know they think I am making it hard for them to do their job. In fact, this has been expressed to me many times in varying forms. Oh, you are a tricky one, aren’t you? You are not making our job easy, and If you would just eat something, you would probably feel better and we might not be trying to work this out for you, young lady, often delivered with a wry smile, are the kinds of comments physicians and nurses make when I vocalize anything I am feeling. As a result, I feel like I need to apologize for being so complicated, even though I am the one actually living this experience. I desperately wish for the doctors to have to live this way for a day, to have some idea of what this feels like. I think if they did, they’d be doing a lot more to help me.

Stress, which the doctors sometimes refer to as being a cause of my issues—and which is definitely ever-present at this time—is the result of this agonizing, sickening feeling that is all over my body constantly and not knowing what it is. I truly believe that my stress is not the cause, it’s just a symptom. But getting the adults around me to actually listen to me, and take action when I explain this seems to be a total no-go. I didn’t feel stressed until I became a sick person. It happened in that order, not the other way around.

A gamut of tests has been run over the past year, but out of all the tests and procedures, the day that sticks out the most in my mind’s eye is the day of my barium meal procedure, a routine procedure used to diagnose a variety of different things inside the digestive tract. It involved my drinking a large quantity of exceptionally cold, thick liquid barium, a type of metal, through a straw while lying flat on my back in a brightly lit room. Forcing the barium down was really difficult for me. If you’ve ever had a hangover and then tried to gulp down a thick shake while lying down in the summer sun, you will know how I felt at that moment. If you haven’t, I wouldn’t advise trying it! Although I am unsure of how, I did it and patiently waited for the test to begin.

To me, the idea