Sometimes I’m Fine, Often I’m Not: My Life With Dynamic Disabilities

Yesterday I spoke at an event in front of hundreds of people. For hours I wandered around the event space, climbing endless stairs and drinking wine with friends. This morning, things look very different. My hips feel like they’re slipping out of my skeleton, fatigue drags down my eyelids and my skin has started to erupt in familiar formations of rashes and bruises. I lie on the sofa with heating aids, waiting for the ache to ease. How can today look so different from yesterday? How can my body be fine one day and collapsing in disrepair the next? 

My conditions, a combination of genetic and autoimmune disorders, fluctuate in severity over time. Symptoms come in flares that may last weeks or months. My musculoskeletal pain may be unbearable one week and only a soft ache the next. The symptoms of my autoimmune disease can be agonising for months, then quieten down for the same amount of time. Along with many other disabled people, I have a specific identity which evades the usual rigid definitions of disability: I’m dynamically disabled.

'Dynamic disability', in opposition to 'static disability', was popularised by Brianne Benness, host of the chronic illness podcast No End in Sight, who started using the term in 2019. Brianne explains that many disabled people she’s spoken with "described feeling like it wasn’t fair to self-identify as disabled, to take up space in disabled communities, specifically because their experiences fluctuated so much."

Mainstream culture leads us to believe that being disabled is a fixed and binary thing: that it is always visible, that symptoms are permanent. There are, however, many disabled people who don’t experience this reality, with our experience and presentation of disability changing across time. Being dynamically disabled is intimately linked with the experience of being chronically ill. Whether it’s IBD (inflammatory bowel disease), endometriosis, ME (myalgic encephalomyelitis) or any number of undiagnosed 'mysterious' conditions, many people living with such illnesses experience fluctuations in the severity of their symptoms. Sometimes we may be able to go to work, cook and clean and still have the energy to hang out with friends afterwards; sometimes we won’t be able to get out of bed, or leave the bathroom, for days.

In this dynamic state, society can make us believe that we’re not really disabled. Vicky of Bread and Roses Counselling confirms this issue. "It’s common for people with dynamic conditions to struggle with imposter syndrome because some days they may feel better than others, so they may end up doubting or minimising their pain or symptoms." I myself experience this deep feeling of imposter syndrome. Part of me recognises that I’m disabled – especially at the height of a flare – but another part of me doesn’t believe that I deserve access to adjustments, or even that I have the right to use the term 'disabled'. If I do feel 'fine' on some days, is my identity at risk? Vicky explains that this problem can be socially reinforced through "messages from others that you 'look fine' or 'were okay yesterday'". Hannah from mobility aid business Not Your Grandma’s also refers to this, mentioning times when she’d go into work without her mobility aids and be asked if that meant she was "better now". Brianne explains that this type of messaging "isolates chronically ill people and encourages them to perform wellness in public". As a result we are left in further pain, our disabilities exacerbated.

Work, specifically, can be difficult for dynamically disabled people to navigate. Vicky says that many people with dynamic disabilities have "concerns about the challenge of what 'productive' work looks like, experiencing burnout as a result of fears about being open about their fluctuating symptoms in unsupportive workplaces." Hannah refers to the way that people with dynamic disabilities are left with the conundrum of when to 'reveal' their disabilities to their employer. Many people don’t disclose their disability until after they’ve signed their contract, which leads to concerns about how they can then be open about their disabled identity. Vicky says that many people with such disabilities come to counselling for anxiety and feelings of shame which are "often down to unsupportive workplaces or unhelpful management styles".

Given the number of unsupportive workplaces, many disabled people struggle to find work that suits their capacities, leading to higher rates of unemployment among disabled populations. This is where the lack of understanding around dynamic disabilities becomes materially dangerous. Across the world, most disability benefits systems screen applicants based on static disabilities, not taking into account the way that many disabled people can have different levels of activity week to week or day to day. Brianne points out that those living with periods of relative stability are at risk of having their benefits removed or being ineligible to receive them in the first place because a "single active day is somehow 'proof'" that they should be able to work full time.

Our conditions may be dynamic but that doesn’t take away from the fact that we’re disabled. Sure, some days may be better than others but not without invisibilised work. For my body to recover from a flare I have to do two rounds of physiotherapy every day, take all my medicines and say no to things I really don’t want to say no to (parties, jobs). Brianne explains that "even when symptoms are well managed, we still need accommodations" to make sure we have time outside of our work, school or social life to dedicate to self-care. A life with dynamic disabilities is an altered life: one that needs care and understanding from ourselves and, most pertinently, the world around us.

Societal understanding of disability has a long way to go. Among many other things, it is crucial that non-disabled people learn the dynamic nature of many disabilities. One way to do this, says Vicky, is "by learning more, being curious and asking your disabled and chronically ill loved ones how they really are, particularly if they always say that they’re 'fine'." However, keep in mind that it's important to avoid placing further burden on us – as Hannah points out, dynamically disabled people are often left with the task of explaining the fluctuating nature of their conditions. Some people may be okay with this but many find it exhausting. If the nature of dynamic disabilities were understood on a wider scale, Hannah explains, there would be "less pressure on us to educate" others.

If these nuanced experiences were understood, perhaps we wouldn’t feel so guilty for having to ask for accommodations. Perhaps we wouldn’t feel afraid to claim the identity as our own and to find community with other disabled people experiencing similar problems. Being believed is an essential part of feeling accepted and, to me, that’s why the term 'dynamic disability' is so vital – it means being believed in all our complex, painful, tired, boring, joyful realities. Some days I might feel better; other days I feel even worse. I need the world to understand this so that those harder days can pass as gently as possible.