The In-between

Overlaying a black background, the words, 'the in-between' sit centrally in thin, white text. A mostly transparent, white outline of the Orion constellation sits centrally behind the text, and Equal Lives' logo is in the bottom right.

I was stuck in bed for many seasons, almost two years, so I never take daylight, fresh air, sunsets or animal-watching for granted. I watch the moon in its cycle and the familiar constellations changing over seasons; Orion’s belt feels comforting during crisp, cold nights.  

I try to romanticise life as much as possible within the limits of my capacity because, honestly, my world is quite small these days and finding joy wherever possible is essential for my mental stability.  

I’m desperate to be in less pain, to have less fatigue, and to have more mobility and dexterity all year round. So, I manage my chronic health conditions like a military operation; I do movement recommended by my physios when I can, I follow pretty rigid sleep hygiene protocols like my occupational therapists taught me to, I do breathing exercises, mindfulness, and other relaxation techniques that the pain clinic recommended. I journal and get therapy to heal my traumas. I eat a mostly anti-inflammatory diet as much as possible, I take my medication and supplements consistently, and I budget my energy with the caution of an accountholder in minus funds.  

I work very hard to stay well, but this pursuit of wellness can be to my detriment, because less external pressure being internalised would probably make me happier and healthier.  I’m conscious that some of my constant pursuit of wellness comes from the internalisation of the ‘lazy Disabled person’ stereotype projected onto people like me by society. 

Chronic illness remains taboo in our society because the notion of never getting better and not being able to ‘lifestyle choice’ your way out of illness terrifies many people deep down. It’s easier to blame chronically ill people for their reality than to accept no one chooses this life.  

A liminal space is a boundary region between places, times, and identities. Being Disabled by fluctuating health conditions is to exist in liminal spaces; in a state of constant flux and between worlds; neither here nor there; never fully living ‘real life’ in the way others can, while being either more visible than others, or entirely hidden from view.  

By all accounts, I could not be doing any more to be as well as possible, and am therefore, viewed as more worthy of health, support, and even of life than other Disabled people, by our ableist society. Yet, doing everything society tells me doesn’t shield me from dehumanising treatment. I’m still public property to be touched, moved, verbally abused, quizzed, scrutinised, judged and assaulted whenever someone chooses to. 

W.E. Dubois wrote of the ‘second self’, a constant self-monitoring, a consciousness of how others may perceive you and may misinterpret your character or actions. I feel this so deeply as a Disabled person with numerous fluctuating chronic health conditions. My ability to enjoy the better days or hours, and to live in the moment, is totally hampered by the constant fizzing of other people’s perceptions in my consciousness. 

Just a few weeks ago, as I walked my dog using my wheelchair as I always do, a man on a bike shouted, ‘Who’s walking you?! You lazy cow'. I know this man’s weird little outburst was a direct result of the political and media class’s stirring up of resentment towards people like me, but that doesn’t make it easier when it happens. I still feel like an outsider, a freak to be gawked at and scrutinised. 

I have many special interests; language is one of them. I achieved a streak of over 500 days’ Arabic on Duolingo (albeit with a few streak freezes!). It’s sad to me that I have considered that this achievement could be used against me to prove I’m too capable to need support, even though I have very real, very expensive disability-related costs. I hate that I feel this internalised shame around my academic achievements as a Disabled person. 

I spent this whole year trying to get my housing association to fix a leak. The situation has reduced my quality of life through increased pain, fatigue and stress, causing me to need time off work and stopping me from doing other important things. To be compensated for the impact, I must demonstrate the ongoing effect it has on my health. 

That is quite a difficult thing for someone with fluctuating, largely self-managed health conditions such as chronic pain and fatigue, to evidence. During much of the time, no one sees me; during flare-ups, I’m stuck in bed alone, in an eerie between world where life doesn’t conform to the same temporal rhythms that others know. Chronic illness management is private and lonely for me.  

How do I prove that the fatigue of washing all these dirty towels multiple times a week costs me the ability to wash myself or do household tasks on many days? How do I prove that a take-away wasn’t a treat but was ordered because I didn’t have the capacity to cook a hot meal? How do I prove that my pain was more 7/10 on a given day than a more typical 4 or 5? 

I sometimes worry that when I smile without a grimace, people don’t understand it’s possible to take moments of joy despite the pain. I feel like I’m not allowed to be happy because what if my next benefits assessor uses that to deny me support and minify the very serious depression I also live with?  

Sometimes I can walk the short distances in my flat without my mobility aids, moving from chair to chair during the day, and I’m mortified when people don’t understand that this doesn’t negate my need for mobility aids much of the time! Why do I feel guilt for the times I’m less sore?  

No one, Disabled or non-disabled, can fully meet every person’s expectation of them - nor should any of us try to!  But Disabled people face an extreme version of this reality. 

There is no winning for us - either we don’t do a given thing, and people talk about how tragic we are, or we do the thing (with difficulty, adaptations and taking more time), and then we have it used against us as a ‘gotcha!’. While simultaneously being told we should all be striving to be Paralympians! The world cannot decide what it wants from us.  

Fellow Disabled people, the lesson here is that we cannot be whatever they want us to be, so we should be living for ourselves and doing the things that make us happy. 

Written by an Equal Lives member