Invisible Disability

Living in a Body That Doesn’t Meet Expectations

This essay opens a new thread of reflections on living in a body that doesn’t always fit the script. There will at least be 3 more pieces to follow over the next few weeks.

There are bodies that run marathons, dance at festivals, carry toddlers up stairs and navigate busy weeks without a second thought. And there are bodies, like mine and maybe yours, that live a different, often invisible story. A story where pain, exhaustion or overstimulation are regular visitors. Where the energy needed to show up, speak clearly or even walk across the room isn’t always available.

Especially when your challenges aren’t visible, the world doesn’t always know how to meet you. When there’s no wheelchair, no plaster cast, no clearly marked sign that says: “this body is managing more than you can see.” But even when there are such ‘sign posts’, when you are walking with a stick or carry a light folding chair across your back so you can sit down whenever you need, the negotiation between your experience and the social world is not straightforward.

These recent weeks, I had several deeply nourishing conversations and email exchanges with friends JH, RB, PB, EK and AM (you know who you are). We spoke or wrote about the subtle, pervasive reality of having a body that doesn’t perform according to society’s unspoken script, and the effects on friendships, work-connections and dynamics with partners and family.

Exploring the vulnerability with them, of inhabiting a body that diverges from the norm, allowed me to breathe again and reframe that a different somatic experience doesn’t mean I’m going crazy…

What is “normal”?

We live in a society shaped by ableist assumptions, where value is often measured by what we can do, how much we produce and how visibly we perform. Our entire culture is modelled on the capacities of so-called high performers: able bodies that are fast, consistent and reliable. Those who move differently due to issues with balance, coordination and pain, have other functioning brains (such as neurodivergence or high sensitivity) or experience inconsistent energy, are often seen as out of sync, inconvenient or even suspect.

Invisibility is part of the difficulty. If you look “fine,” then you surely must be. If you laughed earlier, how can you be in pain? If you were present at the beginning of the gathering, why can’t you stay until the end? The assumption is that illness or disability must be written on your forehead or be dramatic to be real. Otherwise people assume it’s all in your head, you’re making it up, you’re exaggerating. But when you live with fluctuating energy or hidden conditions, you’ll know otherwise. I believe this is still a huge taboo topic and the inability to speak about it adds to the challenge.

Vulnerability and Self-Care. Eline Kieft. Image by Andy Murray (2025)

Naming What’s Hard to Say

And so the question becomes: how do you live in a world that doesn’t easily make space for changing needs, without making yourself small, wrong, invisible or constantly having to explain? I’m afraid some explanation is necessary, if you want to stay in relation.

I often describe this to others as a matter of my bandwidth. It’s not that I dislike people, or don’t want to hang out with them. On the contrary! Nor is it that I want to impose my schedule or routine on others. It’s simply that my system doesn’t always have the capacity to stay connected in noise, activity, full on expectations or different rhythms. As a Highly Sensitive Person (HSP) with a chronic pain experience, it is about ensuring that my nervous system doesn’t short-circuit, so I can continue to function in my optimal capacity.

Yet explaining this can feel like navigating a tightrope: wanting to name what’s true without being seen as difficult. Wanting to express boundaries without creating barriers. Wanting to be in relationship without losing connection to myself.

What is interesting, is that my needs often don’t ask more from others, rather they ask less. They ask for slowness. Spaciousness. Quiet permission to step back at times, to skip a meal. And somehow, asking for less paradoxically feels like too much.

Recently, I lost a temporary, project-based work contract because my boundaries were interpreted as threatening and people felt unsafe around my needs. I had put certain things in place in order to fully participate in the programme. I didn’t think they were too much to ask: some quiet time after lunch and a firm ending time (at 8pm), beyond which I would also withdraw and no longer be available (after a 12-hour day). I was asked to step down from the project, without any room for mutual explanations or finding shared ground again.

Emotional Effects

Even with those closest to me, these moments aren’t easy. People are confused when I can’t confirm yet, need to change plans or opt out altogether. This can stir confusion or disappointment. I totally understand - it’s like the goal posts change while the match is already underway. I’m constantly monitoring a whole bunch of nobs and dials to avoid my system going into shutdown, and this flexibility is needed to stay in relationship from a place of presence.

However, even the need to justify takes energy. It often ripples through my system for hours or days. It creates uncertainty and second-guessing in me. Did I explain it properly? Did I say too much or not enough? Did they really understand?

Failing to meet expectations or letting someone down, stirs feelings of not being enough, or being too much in the wrong ways. It easily gets tangled in the shame of being demanding or difficult. And at the other end, when finding solutions isn’t possible, there is often sadness of being misunderstood despite my best efforts. There can be grief after rejection, or anger for the apparent unwillingness to reach middle ground.

What I’m learning over and over again is that honouring what I need is not a selfish or ego-centric move, nor a failure to connect. It’s a move that supports me to stay true to myself so that I can remain in relationship - and that’s the important part. That makes it a radical form of presence and participation.

How do we dare to show up in all of who we are, honouring the quirks in brains or sensory systems that function differently, hormonal tides that fluctuate or energy reserves that might be unpredictable, without getting fragmented?

I will write more about this next week, exploring why different needs might trigger others, and how we can approach this in the most optimal way. In the meantime, please share how you dance with differences, what your challenges are, and what you’ve found works well!