THE INVISIBLE STORIES
The daily judgement and shaming that people with invisible disabilities have to face.
By Stephanie Mantilla & Hong Jiang
Faith, 20, admits to being one of those awful people that places her feet up on train seats when nobody is using them. In fact, she admits that even her mum does it: “We often sit on those seats that have one that’s parallel facing you so we can stretch out our legs.” Like mother, like daughter. Adela, 45, admits to sitting on the disabled seating on trains and not always doing the courteous thing and offering her seat to another person when they come along, despite the train rules.
Fashion and lifestyle blogger, Roxii, 23, admits to having walked into a disabled bathroom when she’s really needed to use it. However, she has only ever done so when it was incredibly urgent. Unsurprisingly, one of the greatest deterrents to this kind of behaviour is strangers’ judgemental stares and comments. But before we start promoting judgemental behaviour, let’s go back to my primary school teacher’s mantra: ‘Before you assume anything, try this crazy method called asking.’ So we asked each of these malicious, social-rule breaking criminals (and a few others) why they did it and these are their stories:
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Faith, 20
Faith and her mother don’t enjoy standing on public transport because like an estimated 2% of Australians they have fibromyalgia syndrome (FMS), which is an invisible disability that causes chronic pains in the muscles and tendons. Her FMS often causes fibromyalgia flares (or ‘fibro-flares’), which is when symptoms intensify and cause acute ongoing pain, which can last anywhere from a day up to a few months. For Faith and her mother avoiding public transport isn’t an option because fibro-flares can render a person unable to drive. This means that they often find themselves taking public transport and being faced with the problematic decision of whether to sit on the disabled seating. “We feel that if we were to sit in the disabled seating areas we would get a lot of looks because people would think ‘well you’re able-bodied why are you sitting in the disabled areas?’” Faith and her mother fear strangers’ cold glares and remarks and avoid disabled seating even though it would reduce the strain on their bodies.
Have you ever personally wished your disability was more visible?
Faith: I would say yes and no. Because of the fact that while I do wish it was more visible because then people would start taking me and even my mum more seriously, we’ve gotten a lot of judgement, a lot of questions, a lot of prejudice. So while visibility with disabilities does help in that sense, it also makes it a lot worse. While I am disabled I do sit back and think that there are people who have it a lot worse than me, those who are wheelchair-bound and that’s all they will ever be, whereas I just live a constant amount of pain.
Could you describe the pain you go through?
Faith: It’s the worst thing that I have ever had to deal with and I have had a horse stand on my foot! It pretty much goes through your nerves and muscles. It’s like if you have ever felt sick with the flu, you’re lying in bed, running a fever and you just feel achy all over. You don’t want to move because the sickness is just destroying your body from the inside. The worst thing is that it’s so unpredictable. It can be a tidal wave or it can be a little splatter of rain. It can be anything along the spectrum.
If your fibromyalgia was a person, what would they look like?
Faith: She would be the schoolyard bully. Every day you’d walk through the gates, she would be there, taunting you to get some kind of reaction. Her predatory advances are unpredictable; some days, you can survive without her bullying. Fibromyalgia’s the bully in your own body.
To hear more of Faith’s story:
Music credit: Charity Chuang; Voice over credits: Louise Hewson & Rowan Mantilla
Adela, 45
Adela prefers sitting down on public transport for comfort reasons because she, like an estimated 2% of Australians, has rheumatoid arthritis (RA) which is an autoimmune disease that attacks the joints and creates mobility issues. In her case, even walking for 25 minutes can be an exhausting and difficult activity. “There have been many times that I’ve wanted to give up my seat on a train or bus because it was the more socially appropriate thing to do, but the thought of standing for an unknown amount of time scared me. I know people have probably judged me for it, but there’s nothing I can do.”
Do you tell people about your invisible disability?
Adela: I prefer not to. Partly because it means that I have to explain to them what rheumatoid arthritis is and also partly because I’m scared they won’t believe me or take it seriously.
Has that happened before?
Adela: Yes it has, I’ve asked for days off from work before due to the overwhelming pain and my managers have acted as though it’s just an excuse to pull a sickie. I once had to call in sick as I couldn’t physically move my leg because of the intense pain, however after a day’s rest, my leg felt a lot better. I could walk again without too much difficulty. When I came into work the next day, I heard my manager mutter: ‘what happened to your sore leg?’ That really hurt. I acted as though I didn’t hear her comment but when I got home I cried. A lot of the time you find that people only take your condition seriously if you have some physical visible evidence, such as being in hospital.
What would your RA look like if it were a person?
Adela: My rheumatoid arthritis would be an overpowering, annoying and very active man, He’d be strong and healthy and that’s why part of me is very scared of him.
Roxii, 23
Roxii lives with a “constant fear” of having to use and remain close to a bathroom because she has ulcerative colitis, which is an invisible disability that causes micro-ulcers to form within the stomach resulting in inflammation that can cause severe forms of blood-filled diarrhoea. Roxii, who runs the fashion and lifestyle blog Studded Kisses, recently revealed her invisible disability on her blog in a move to help raise awareness about Crohn’s and Colitis. Crohn’s disease is an invisible disability that causes inflammation of the bowel which can also lead to severe diarrhoea. Together, Crohn’s and colitis affect over 5.5% of Australians, many of whom, as Crohn’s and Colitis Australia have found, also share a fear of the bathroom. For Roxii, remaining close to a bathroom is always on her mind, causing both stress and fear: “The stress can be so bad I often worry so much I give myself terrible headaches.” She also admits that she prefers to queue for 10-15 minutes for the ladies bathrooms because she is “too scared to use the disabled toilet in case someone [makes] a comment.”
How does your ulcerative colitis affect your confidence as a fashion blogger?
Roxii: There is a huge pressure to look and feel ‘normal’. The only visible side of my disability is that my stomach blows up like a balloon where I get really bloated. This really lowers my self-confidence, especially as a fashion blogger. I want to wear outfits I feel good in but instead I wear outfits I don’t feel good in with a bloated stomach or I have to wear something baggy to cover it up.
What would your ulcerative colitis look like if it were a person?
Roxii: Most likely be red – with pain or embarrassment and worry!
To hear more of Roxii’s story:
Music credit: Charity Chuang; Voice over credits: Shelby Allen & Rowan Mantilla
Rebecca, 21
Rebecca admits to sometimes rudely choosing to not make an effort to start polite conversation with people she has just met, because she, like over 15% of Australians has an anxiety condition. Although Rebecca, who also has depression, realises that her choice is often misconstrued, she explains that sometimes when she meets new people: “It makes me feel sick to my stomach. So my way of coping is that I’m just not going to talk and they perceive that as me being rude. But that’s not how it is.”
How does people misunderstanding the situation make you feel?
Rebecca: Really sad and ashamed of myself.
Has it ever made you wish your disability was more visible?
Rebecca: Yes and no. Yes because I want people to believe me when I tell them that it’s not that I’m lazy it’s just that I’m really sad and I can’t imagine actually doing what you’re asking me to do right now. Or I’m sorry I can’t call the doctor to make an appointment because the thought of using the telephone makes me sick to my stomach, I want people to actually believe me when I say that. But at the same time no because people when I tell them that I am really depressed and I have bad anxiety and that I have been suicidal, they tend to ask me really personal questions and pity me. And I don’t want that. They treat me differently and I really don’t want that, so yes and no.
What would your depression look like if it were a person?
Rebecca: She would be myself covered in darkness and shadows.
Devon, 20
Devon* went through depression during high school, and consistently felt it was difficult for the people around him to understand what he was going through. At home, he often avoided communication with his parents, because it was “really hard for [his] parents who haven’t been through depression before to understand, or relate to [him] about it.” Devon highlights the importance of awareness and identification of depression both for the individual who has it and the people around them. Depression will affect over 16.5% of Australians at some point in their lifetime. However, despite its prevalence, there is still a stigma attached that, the person who has depression is at fault, and also a vast unawareness of how somebody with depression can receive help.
Do you feel like your invisible disability is regarded as less than physical disabilities?
Devon: No, but also yes. Because it’s not physical, you can still perform all body movements technically, but it’s just like your brain doesn’t want you to do those movements. There are mental disabilities, which actually stop you from speaking, but I guess with depression, you don’t want to speak. It doesn’t make it any less valid, but it’s just that the disability comes from a difference place, so it should have a difference concession given to it.
Do you wish people were more aware of your invisible disability?
Devon: Personally no, because in my case, them knowing about my invisible disability didn’t help. I think the bigger issue is that the people that have it need to be more aware of what they have. Usually from what I know, the people who have depression don’t know how to deal with it, and the people around them don’t either. I think people know that mental illness exists, but it’s really hard to tell that someone has it.
What would your depression look like if it were a person?
Devon: I am the invisible disability. I see myself in a third person way, where the person that I’m looking at has an invisible disability, but I don’t. And I watch myself do things. It’s like looking at a reflection of yourself, where your reflection has the invisible disability.
Gwenyvere, 23
Gwenyvere, 23, has lost many jobs due to being considered a ‘dangerous’ individual because she like 1% of individuals has Dissociative Identity Disorder (DID), formerly known as Multiple Personality Disorder. People with DID can have as little as one alternate personality, known as an ‘alter’, or as many as over 100 alters. For Gwenyvere, who also has social phobia, a type of anxiety disorder, “meeting random people calling me ‘Veronika Romanov’ or ‘Luca Horowitz’ is very hard to deal with.” She explains that each alter is unique “due to each alter having a different personality and background, some speak with accents, have different foods they like. Some even have different allergies to me.” However, unlike the dominant media portrayal of DID none of her alters are in any way dangerous to other people, a misconception that too many people believe. She clarifies that “they are all a part of me and in some way reflect a part of my personality.”
Do you feel like the mainstream media talks about DID?
Gwenyvere: No way. If it is ever mentioned it is because a murder is using it as a way to get out of being sent to jail, using the excuse “It was my alter”. This only further presents a horrible image of what I am dealing with, thus I often get people worried I will turn around and stab them when I switch. This is certainly not the case. If anything, my alters are more likely to be too scared to interact with anyone around me. It also doesn’t help the amount of movies that present my disability in a poor light.
Can you name any examples of movies that do represent your DID properly?
Gwenyvere: The closest you will get is United States of Tara, and even then, there is a lot wrong with it.
What would your DID look like if it were a person?
Gwenyvere: My disability wouldn’t be one single person but a variety. I like to describe it as a multi-faceted diamond. There are all these different parts but they all make up one whole.
Bob, 53
It is not uncommon to see Bob “staggering and stumbling” around and having speaking difficulties, because he like an estimated 2 million people worldwide has Multiple Sclerosis.
Have you ever wished that your invisible disability was, even a bit, more visible?
Bob: I have balance issues. That’s code for I bump into things and fall over a lot. I carry a walking stick, partly for reassurance, partly as a signal to the world that there is ‘something wrong’. I’m not staggering about because of alcohol. When I first got the stick it was noticeable how more people smiled and said hello, they didn’t just avoid the drunk wandering towards them. Th stick has become my badge, my signal that I have an otherwise invisible condition.
Do you feel like your invisible disability not being physical makes it lesser than physical disabilities?
Bob: Not less valid, but there are degrees of disability. Lumping us all into one definition as ‘the disabled’ is lazy and unhelpful. We’re all different, healthy or otherwise, and it’s about time society learned to accept difference and develop to flexibility to help those who need it. How many of us are parents? If our child fell we would help them up, soothe a sore knee and give them a hug. Why should we treat someone else’s child differently when they need support and comfort?
What would your MS look like if it were a person?
Bob: I think of my MS as a bit of a monster. Big, scary and invisible, a bit like the monster in Forbidden Planet. The combination of muscular pain and fatigue can be a monster at times. It’s not seen by other people but it eats you up.
*The name of the person has been changed upon request
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In Australia 1 in 6 people have an invisible disability. Chances are, you or someone you care about has one or will develop one at some point in their life. Perhaps if people know and understand more about invisible disabilities, collectively, we can make a difference for the better.
Do you or someone you care about have an invisible disability? Share your story on our submissions page.