Invisible

We've all heard the phrase, right?

Invisible disability.

We've all seen the gradual introduction of the (much needed) reminder that “not all disabilities are visible” on the doors of accessible toilets.

If you're reading this because you have multiple sclerosis you'll more than likely be well aware that most of our symptoms are invisible to the casual observer; fatigue, bladder & bowel urgency, brain fog, vertigo, and pain, to name a few. Even early mobility problems can be difficult to see - an inability to lift a leg the height of a tall step despite walking on flat ground apparently ‘normally’, or being forced to concede to a re-charge after covering mere metres (nerve-fibre fatigue). I recently saw multiple sclerosis referred to as a “multi-faceted disability” by someone living with both visible disability and all the rest of it. There is always so much more going on than meets the eye, even after one aspect of someone's illness becomes more visible (usually mobility).

But I didn't start writing this to tell you about the invisible symptoms of MS, nor to raise awareness of invisible disability in general. There is a much more insidious type of invisibility - feeling unseen by the people closest to you.

The catalyst for this brain-dump was a minor argument with my major person - my husband. My husband who, despite a long history of thought, care, and attention, didn't think about the consequences of leaving me without transport for four days when he offered to be the designated driver on a golf trip (leisure activity: key point), taking our one car and rendering me completely stuck.

Am I… invisible?

Is my life so pointless that he thought nothing of leaving me housebound and alone all weekend?

Is my stoic “water off a duck’s back” attitude masking too much, lulling my loved ones into a false sense of “she's fine” security?

These were the immediate questions that came to me following a quick tear-soaked rage, fuelled in part by hurt and in part by my new pal: fear. And this isn't the first time I've felt surprised by people's inability to notice what feels so tangibly, vibratingly, threateningly obvious to me.

Can't you see how much this is taking from me

Can't you see how ill I feel

Can't you see how tired I am

Can't you see how scared I am

Can't you see how much effort this is

Can't you see

Can't you see

Can't you see

On a human level, I get it. We all live in bubbles of our own perspective and lived experience. We all observe the world through a filter of our own personal history, our own pain, our own priorities. I try to have patience. On an animal level I'm thinking, “come oooonnnn - look at me! Don't I look like death?! Whyyyyy are you still asking me things?!”

My pet peeve is when people see me when it suits them, and seem to think I'm fine when it doesn't. The subconscious belief that someone's disability works to a schedule to suit other people's convenience or emotional capacity is the biggest precursor to invisibility. I've typed it so it must be true.

I don't doubt that many people also equate “acknowledgment” with “pity”, because of course disability is inherently pitiable so to see it is to invite discomfort, awkwardness, confusion (wait, she's using a wheelchair but she's also competent and amusing - da fuq?! Wait, she's competent and amusing so even though she's clearly struggling with that door I'd better not offer to help. wait - what the fuck?! all my preconceptions are crumbling omg what do I doooo), and a feeling that you might be witnessing something shameful. Disability is the nakedness of the human-soul that no one can bear to see so plainly, so we render it invisible - blurring over edges and pixelating access needs.

And I do it to myself, too. I hide aspects of my new and changing reality inside all sorts of stubborn refusals - a victim of my own upbringing on this ableist planet. I have always done this, long before I became a mobility aid user and long before anyone else knew just how much multiple sclerosis was already impacting me. Recently, however, I have noticed that because my MS is no longer wholly invisible I am attempting to make myself disappear - only allowing myself to be seen in small doses before my limp becomes too pronounced, before my energy wanes too much, willingly paying the consequences of keeping other people comfortable in my presence. Because that keeps me comfortable, too.

How - I hear you cry - can I expect others to see me when I can barely even look at myself?

Great question. I'll keep you posted.