Invisible Illness: Stepping out of the Shadows
Words by Cailean Coffey.
Despite having a congenital heart disease (a univentricular heart defect for all you cardiology nerds out there!) since I was born, last year marked the first time in my life I really identified as disabled. I have what’s known as an invisible disability, which is defined as a disability that is not immediately apparent. There are no tell-tale signs that I have a disability or an illness, and that in itself has its perks: no unnecessary questions, no unnecessary worry for others and, generally speaking, less attention. It gives the individual the power of disclosure.
People use this power in very different ways. Some prefer to disclose it to friends and employers, while others tend to keep it a secret. For me, I kept things pretty quiet. I’ve found that the less people that know the better; no worries, no stress, and no need to answer “Are you okay?” every time you walk up a flight of stairs. I’ve had CHD my whole life, I know no different and so I know where my limits are and am more than capable of telling people when I need extra support. I’d often play soccer with friends, aware that they have no idea about my condition. I just run for the first five minutes and then when I get tired, I just wander around midfield, making the odd run but otherwise being pretty pedestrian. What people didn’t know can’t hurt them. Until last March.
In January, I began hearing stories of a virus in China. Thinking nothing of it, I’d scan occasionally every few days to see how things were looking. By February, I was slowly beginning to retreat from friends. I had been studying for a master at the time but by the start of March I stopped going to lectures. That was the first time my lecturers had ever heard of my CHD diagnosis as something they needed to worry about (I conducted studies oN the impact of childhood CHD diagnoses on parents for both my MA and BA dissertations) and while they were very supportive, it still felt strange putting this information out into the world. For the first time really, I was identifying with my illness. I moved home on March 11th and have been here ever since (apart from the brief release that was the summer, where cases were at an all-time low).
The last 12 months have been difficult for everyone, but personally it has led to a complete re-evaluation of my sense of self. I was worried that people would begin to identify me as disabled and, rightly or wrongly, I was worried that this would put barriers in my way that go beyond my ability to leave my home. I was worried that my career would be impacted, as employers would be less willing to assign me tasks they didn’t think I could do. I was scared that my five years of hard work in one of the country’s most competitive industries would go down the drain.
I wanted to see if others with invisible disabilities felt similarly, or if really I was just being selfish. Turns out it was not just me.
Art by Liam Horgan.
Sukhjeen is a university student in the UK. She was diagnosed with Rheumatoid Arthritis, an auto-immune disease which means she takes two different types of immuno-suppresants. Prior to COVID, she very rarely had to think about her illness, saying that it's only effects would be that she may have pushed herself too far physically some days, which in itself would be fixed by taking a rest. “I didn’t even talk much to my doctor before COVID” she explains, “now I feel like I talk to them too often”.
In February, as she was watching the COVID cases in the UK rise, she decided to take the year out of college to stay safe. In doing so, she found herself making her university aware of her illness for the first time. “I never had to actually tell anyone at uni that I had a disability” she recalls, “I think this really came out of the blue for them because I don’t look ill”. Disclosing her illness wasn’t easy, as she found herself fearing people would doubt her, comment on it or ask her difficult questions, in order to determine if she was in fact truly ill. To combat this, she would include a copy of her medical certificate with every correspondence, even when it wasn’t necessary. “I always felt like I had to send it just so there was proof it was an actual doctor who diagnosed me and that I wasn’t making it up just to go home” she adds, downbeat.
Like everyone, Sukhjeen’s first lockdown was full of Zoom and catching up with friends. Lockdown two and three, however, have not been as easy, and Sukhjeen has found herself worrying about her friendships post-covid, as she finds herself rejecting invites from friends to meet up out of fear of getting sick. “I think because I’ve said no so much now, it’ll get to the stage where people won’t want to ask me” she explains, “That I have so much baggage when it comes to doing things that people will think ‘she’ll probably be too ill or too cautious or overreacting. It definitely will have implications, I can definitely see them excluding me from things in the future”.
People’s unwillingness to partake in Zoom activities that were on trend in lockdown one has had a huge effect on Sukhjeen’s spirits. “I feel like I’ve been more excluded now compared to lockdown 1 because people just want to meet up in parks and take risks they wouldn’t have in Lockdown 1. I miss the fact that we were able to do fun things over Zoom but now all I do is interviews and meetings, those are the only people we can talk to now and the people closest to us aren’t there to talk to us anymore”.
Catarina Rivera is based in New York City. She has vision and hearing loss, meaning that she has less spatial awareness and finds it difficult to maintain social distancing as she has a very narrow visual field. “I can’t keep track of where everyone is so with social distancing I don’t feel comfortable going out in this climate” she adds, concerned. The widespread wearing of masks has also meant that she is unable to lip-read, which in turn has led to increased trouble in communication in busy public spaces.
“I didn’t expect to feel this limited at this point in my life” she explained of her relationship to her disability over the past year, “I’ve been very empowered with a cane and confident with it for at least 4 years now. I’d gone through that journey and was feeling very confident with my disability, but the pandemic made me realise that the world can change so quickly and I lost so much of my independence that I didn’t expect to feel such a big change”.
While Caterina has always related to being disabled, her relationship and her willingness to speak about her experiences has changed over the last number of years. In August, she decided to set up an Instagram account sharing her story of her life as a Latinx person with a disability, Blindishlatina. “It made me feel a lot of solidarity with other people with other disabilities who are also experiencing a loss of independence” she said of the pandemic’s effects, before adding “people are tired of the world not being accessible to them and people are finally standing up, taking their first steps and having their voices head”.
Robert O’Sullivan is a disability activist from Cork, focusing on hidden disabilities and mental health to try to help people realise that ‘disability’ is not a dirty word but only offers up a different set of challenges. “People with mental health illnesses or hidden disabilities sometimes feel like they should be normal and get frustrated when they can’t do things'' Rob explains, adding “There’s no shame in not being able to do things”. He spent his pre-COVID days urging organisations and businesses to consider the needs of disabled people and the accessibility and facilities they offer. He’s hopeful that COVID will help make able-bodied people more aware of the lack of facilities available for the diabled. “People have realised that footpaths are really fucked” he explains, “people see that they are very narrow, and if there’s a wheelie bin on them there’s no getting past it, so people are starting to realise how shit it must be if you are in a wheelchair, having an obstacle course in your way”. “Hopefully now everyone sees it, the government will do something about it” he adds, more in hope than with any real optimism
Robert has spent the last two months caring for a family member, meaning he has been cocooning since March. The furthest he’s been from his house has been to Argos, when he had to collect a desk. He too has noted a change in people’s lockdown habits. “At the beginning of lockdown everyone was doing zoom quizzes or online hangouts, but as time went on it all disappeared, so if you missed out on that you missed out on all socialising for the year really” he explains of his Zoom experiences; “A lot of people have adjusted to being socially isolated. People are going to find it really hard when things get back to normal”.
Everyone’s experience of the last year has been different, each with its own unique set of challenges. As we move towards a day when vaccines are widespread, it’s important to remember the members of our community that we may have forgotten along the way. It’s more important than ever that we don’t leave people behind when the world clicks back into gear. For many, the word disability, and the nature in which they identify with it, has changed in significance, but here’s hoping that it will never be one that defines us once more.
Cailean Coffey is a journalist covering music and culture in Ireland. He has been involved in media for over five years and has worked for publications such as The Irish Times and CLASH Magazine in the UK. In 2017 he joined Goldenplec, where he has gone on to interview some of Ireland's brightest musical talent, including LUZ, Offica, RUSHES, Alex Gough, jYellowL etc. Since 2019, he has also been the Digital Editor of Soul Doubt Magazine, where he has covered a wide variety of topics within the urban landscape. Cailean is also the host of the new-music show Garden Gigs on Quarantine FM, which focuses exclusively on brand new Irish music. Garden Gigs is on Saturday 3-5pm every week on Quarantinefm.ie.
Twitter: @Caileancoffey
Instagram: @Caileancoffey
