A lump of shame spread throughout me as the doctor laughed, his whisper-white office adorned with degrees and expertise and cynicism. ‘You don’t look ill.’ Biting my lower lip. ‘But I feel it. I have felt like this for almost three years.’ He looked over the top of his oval glasses. ‘Sometimes people exaggerate their illness. Have you tried sleeping more?’ Have you tried showing empathy? I wanted to scream. I gripped the rim of the plastic chair I sat on, the sterilised smell of the space turning my stomach. ‘I know my body. And I know that something is not right.’ ‘If something was wrong, the tests would have shown it. You know, you can’t keep taking time off every minute you feel a bit tired.’ My shoulders and hopes crashed. I was lost for a response. He filled in the silent space. ‘Here’s a vitamin I’d recommend. And get more sleep.’ I stumbled out of his room, the sixth doctor to downplay my condition. My chest was bursting with fire. Why did I feel so angry about this? So trodden on? So dismissed? I swiped my card at the front counter, the dour receptionist putting through the rebate. I checked the receipt she handed me. Medicare had not refunded my dignity.
A hit of glandular fever when I was twenty-one tag-teamed with a condition I would later come to know as Chronic Fatigue Syndrome (CFS). For an illness to be deemed as chronic, it has to have lasted for six months. I have punched that membership card twenty-eight times now, and counting. The fatigue part of it is waking up as physically drained as though I had run twenty kilometres the day before, my mind aching and scrambled, my emotional and social tank close to empty. And the syndrome – well, syndromes are a medical ‘I dunno,’ a collection of symptoms without an identified origin. It’s like a game of Chinese Whispers.
I had to quit everything I did for seven months, to recover enough to consistently get out of the door. It was another eight years before I could muster up adequate energy to work part-time in the industry I studied for. I have never been close to being able to working full- time. I eke out the most from mediocre mitochondria, but I still have to say no to opportunities substantially more often than I can say yes. I am tired of being tired. And I am tired of facing negative attitudes towards my condition. Over fourteen years of living with CFS, I have experienced comments and actions from others that I am now understanding to be microaggressions. A microaggression is an indirect or subtle expression that highlights a negative bias and prejudice towards you because of one of your differences to them. Their impact is to point out perceived abnormalities and to marginalise, to say who is in and who is out. Microaggressions are felt regularly by people of colour, the LGBTQI community, those with disabilities, people in poverty and those of us with long-term illness. People who lob these invalidating and patronising comments often don’t realise the biases they are revealing and the damage it’s causing the receiver. Microaggressions can come across as back-handed compliments in thick disguise. One I have received regularly is, ‘You’re doing well for someone with chronic fatigue,’ implying that others are not showing strength in how they cope with their experience of it.
Here’s some further common microaggressions that we with chronic illness face: ‘Have you tried _____________?’ Fill in the blank with any sort of protein shake, tablet, energy drink, home remedy. You’re seen as a problem that can be easily fixed, instead of being offered empathy and compassion. ‘Just push through it,’ or if they really lack subtlety, ‘At some point you’re gonna need to pull your weight,’ as though the struggle is down to laziness, not illness. People with chronic illness are highly driven beings, but often lack the body and health to carry out that drive. ‘It’s amazing that she’s stuck by you,’ complimenting my wife’s loyalty by saying how undesirable illness must make me to her. ‘You don’t have to keep mentioning your illness.’ A remark designed to silence you, to shut you down. ‘We all get tired,’ implying that your condition is not a big deal. ‘I thought you said you were sick,’ their annoyance when you achieve something, as though you’ve been trying to con them. In their eyes, you either have to be bedridden or fully recovered, and for most people with chronic illness, it’s neither. ‘People with illness can’t succeed.’ Believe it or not, we can be sick and achievers at the same time. The eye rolling and shared smirks when I leave an event as it’s past my bedtime of 8.30pm.
Receiving each one of these stings me. I feel insulted, invalidated, patronised. The subtle, and regular, digs take their toll, stripping away some of the preciously-little energy available to me. The impact is cumulative, each one a marble that rattles in my gut, each one punching me psychologically and pushing me to the outer of many groups and events. I crave understanding and empathy for my CFS and to receive the opposite limits my options further than what the illness already does.
After three years of doctors laughing at me and dismissing my health concerns as fiction, a tutor at my college pointed me towards a GP who they said worked with chronic illnesses. I walked into Bruce’s office, my guard right up, sceptical that a health professional would take me seriously. Thirty minutes later, the appointment done, I sat in our red Corolla, wiping away tears with crusty tissues from the glovebox. He believed me. He hadn’t laughed at me or implied a laziness. He listened, asked questions. He shook his head in sorrow at all I had missed out on for three years. Handing me paperwork, he stepped me through the tests he would do and why, telling me of the aim to slowly increase what my body was capable of currently doing. He explained the gaps in the medical research and fired up when sharing how many other doctors dismissed chronic conditions. No microaggression. No microinsult. Instead, massive compassion. I turned the key of our car, chronically fatigued. And relieved.
Eleven years on from that day, I was again talking to Bruce. I have only met him in person three times, with our appointments done every few months over the phone due to me living in a different state to him. I am currently living through my worst patch of chronic fatigue in five years, struggling with the increase of physical weakness, brain fog and microaggressions from those I’ve tried explaining it to. I held my Samsung in one hand, my other hand holding a metaphorical cap, willing for any scraps of good health to be placed into it. Chronic fatigue-ers can’t be choosers. ‘Bruce, it’s gotten worse.’ I gave him the details, then held my breath, still raw from recent verbal slights. ‘Oh Dave, I’m feeling for you. That’s deflating. You’ve put so much hard work in to get to where you are today. We are not going to be complacent with this drop in health. This is what we’re going to do about it.’
A breathe of relief flowed out, heaviness lifting from my torso. Belief in my story. Recognition of the immense strength it takes to live with a chronic illness. Empathy for my struggle. Support to walk alongside me in the next chapter. These are the elements that microaggressions spit on. And yet these are the elements that people with chronic illnesses are crying out for. We will take better health any day of the week. But in the meantime, we need comments and actions from others that validate, empathise and walk alongside us in the ongoing circumstances. We need a chronic amount of acceptance and compassion.
Dave Clark is a writer-poet with CFS who lives and breathes in Mparntwe (Alice Springs). He works as a counsellor and enjoys reading, photography and giving voice to quieter stories.
His works have been published in Mascara, Verdant, Adelaide Lit, Quillopia, Slippage Lit, Melbourne Culture Corner and Right Now.