Magdalena Kozlowski uses They/Them pronouns and can be contacted in their capacity as a disability and health issue support person and advocate via firstname.lastname@example.org. The Disabilities and Carers department community can be joined via the group https://www.facebook.com/groups/MSAdisability/ also linked through the Facebook page MSA Disabilities and Carers
Since childhood, I have struggled with the invisibility of suffering. That when I encompass unbearable pain, the people around me who care about me can look right into my eyes which I thought must be overflowing with agony, and say ‘you don’t have a temperature, go to school’ and ‘it’s ok, just stop thinking about it’. There have been times when the pain is from mental illness, and I am bigger on the inside – my tiny fragile body feeling tenuously too dense to shatter from the massive space inside me. That immense interior space dominated by the towering spectre of suffering, containing an explosion that somehow never reaches my skin, somehow never burns my outside and never becomes visible. It felt impossible that I could contain such pain, that this burning universe could sit in me, perfectly shielded from view. I knew that it was real, and the fact that nobody else could see it was what changed it from endurable to unendurable.
Sometimes, invisible pain is physical. When I was 13 my chronic pain began showing symptoms and I dutifully submitted myself to years of tests, doctors’ appointments, and in lieu of diagnosis, I eventually submitted myself even to the belief that it was not real, that I was an attention seeker and my brain was ‘making up’ the pain because I was selfish. Because that is what every doctor suggested when they could not find the cause, it was what every PE teacher suggested when they refused my pleas to be allowed to sit out certain activities I knew would result in a pain flare. And it is what the depression said, as it filled the cavernous space inside me built to contain my invisible suffering.
It turns out that shy adolescents generally aren’t making up their illnesses, and I certainly wasn’t. But it did take 9 years to get diagnosed with the specific illness that started with that terrifying, sensory distorting pain when I was 13. Since then I have had a laundry list of other disabling illnesses crop up, not all of them are accurately diagnosed yet. But the trauma of not being believed is no longer the worst part of the invisible suffering. Losing the childlike hope that an individual’s experience can be truly understood by others removes some weight from the incomprehensibility of my pain by others. But I refuse to accept that we are not believed. That when someone states their symptoms or their needs, they are not believed, by default. Perhaps you’re reading this and thinking ‘I am believed, what is this bitch whining about’, and good for you. I’m so glad that you can’t relate, and I truly hope that you never fully understand what I’m saying. But I’d like you to have a go at believing me that this is not just my experience, and consider why you may not share it – are you disabled? Are you perceived as female, or a person of colour, or queer, or mentally ill? Are you in a lucky position where you live in a society that isn’t training every member to doubt your word?
When we move through life with suffering that not only cannot be seen but often also cannot be named, we collect the burden of being disbelieved. We learn that our ‘confusing’ illnesses or ‘angry complaints’ of injustice or ‘for attention’ suffering are off the conversation table. Every word behind our back or to our face that raises doubt of our experience cuts a little deeper into the cord that connects us with other people. Often, we are already struggling to demonstrate our symptoms to medical professionals in order to survive – as with the endless number of people who go undiagnosed with disabling conditions for years or decades, when diagnosis is a prerequisite to care. Why do we need to gently, tastefully, attempt to ‘prove’ our struggle if we want the simple support of being believed by friends and colleagues? If someone tells you their needs or their symptoms, they probably worked hard to be honest with you, it can’t hurt you to simply accept what they have told you about themselves as true.
11 years after I first experienced the symptoms of invisible disability, which were equally physical pain and being called a liar, I have found a raft of understanding of the social issues at play which goes some way to protecting me when I do experience ableism and a lack of compassion. I work in disability activism, and I have studied sociology and disability theory and queer theory, read papers on these issues and even identified research gaps. Basically, I’m about as equipped as you could hope to be against the barrage of expectations that I will ‘work harder’ against my illnesses or ‘grow out of it’. So the question of how I use this knowledge to escape the burden of invisible suffering is an interesting one. The short answer is that I don’t. Not really.
I certainly have a better support system and a greater ability and bravery to educate them on how to understand and support me. My mindfulness and control of my mental health is worlds better, and I believe that I am almost asymptomatic in my depression, by merit of the fact that when I am depressed it seems to me a very natural and logical response to unending physical agony and not able to be pathologised. But there are so, so, so many times when I am haunted by the years of disbelief, the opinions of the majority of people in this society that I am at fault for being broken and am of little value until I am able to be more active and more productive, and the medical gaslighting from a young age that perhaps I ‘just don’t like sports and want to play sick’. I have had nights where I am woken up by a surge of pain, an exacerbation of my usual level of pain, and as I lay awake unable to move I think to myself “What if I’m just lazy? What if I have myself fooled?”
I try to trust my genuine friendships, the true connections in my life, the people who say ‘you’re not a downer when you can’t get out of bed, you bring so much good into my life’, but it is hard not to say ‘I’m sorry I’m such a burden’, especially to my partner. When I am honest about a particularly bad day, and a friend says ‘is there anything I can do? Let me get you a pillow, some water’ I have to fight the urge to think that my mere existence has made them feel bad, made them feel guilty, that they’re trying to pay penance for being able-bodied and that they would be having so much more fun if I could just disappear. And trust me, I am loads of fun!
On the occasions when I can stand for longer and be awake for longer and travel to gatherings, I love to dance, to sing along to music both great and terrible, to weigh in on many topics occasionally even with wit or insight, and to snuggle on the couch with my friends and a bottle of wine, bearing our souls or laughing all night. I love to read, to write, to discuss history and culture and botany and mineralogy, to listen and learn and give advice when asked, to laugh about my friends’ dating hiccups and cry together when we are hurting. But I don’t feel like a good friend. Every time I change that ‘interested’ to a ‘can’t go’, I expect that next time I won’t be invited.
The way forward for me is, of course, to connect with others who share the experience of suffering invisibly, to unlearn our trauma together, and to trust ourselves. But that is not possible for everyone – community is hard to find, and as a minority with barriers to spending time together due to differing accessibility needs, energy levels, and all the minutia of disabled life, it is even harder. This means that in addition to the kind of social supports offered by autonomous groups (such as the ones you can join through the google form linked in MSA Disabilities and Carers Facebook page ‘About’), we also need broader social change in the form of being believed. The reduced psychological burden on people suffering invisibly if we were taken at our word in general, would have a very real impact on our recovery and capacity. It would leave the energy currently wasted on doubt, guilt, withdrawal from friends, and fear all freed up to actually be spent on coping with our struggles.
Magdalena Kozlowski uses They/Them pronouns and can be contacted in their capacity as a disability and health issue support person and advocate via email@example.com The Disabilities and Carers department community can be joined via the group https://www.facebook.com/groups/MSAdisability/ also linked through the Facebook page MSA Disabilities and Carers. If anything in this story has upset you or brought up difficulties you personally face, Monash provides a free counselling service for all enrolled students, and you can call Lifeline on 13 11 14 or QLife if you would prefer to speak to an LGBTI+ person on 1800 184 527