You don’t look ‘disabled’

A common thread I see a lot, and I am not sure if it’s ‘Blue Car Syndrome’* or not, but there seems to be such a negative steer against those with disabilities. Particularly, those who are considered ‘ambulant’ disabled*. Since my diagnosis in 2019, I’ve had a lot of this negativity pointed directly at myself so I wanted to set the record straight on what it looks like to be disabled.

My neighbours do not consider me disabled. It’s a phrase I hear more than I should. I don’t ‘look’ disabled or ill, as if I needed a red neon sign above my head to serve as a warning. What does it take to be disabled enough?

I was diagnosed with Fibromyalgia in 2019, and is (sadly) only one of the conditions I live with at aged 27. According to my country’s government, it’s classed as a ‘real and potentially significantly disabling condition’ (full transcript of this can be found, here).

If you’re wondering what Fibromyalgia is, it’s a long-term condition which is based on a sensitivity to pain with lots of sufferers having ‘widespread musculoskeletal pain’*. It’s believed that the causes of Fibromyalgia are based on your brain not processing pain signals correctly (nerves misfiring) or potential nerve damage.

Despite it affecting 1 in every 25 people, it is a challenge to get a diagnosis. Widespread pain can be caused by a number of different ailments so doctors will want to run through some tests (like bone scans) to determine the root cause.

A common theme with Fibromyalgia is that it can manifest itself in a variety of ways with each sufferer having their own experiences. In my personal experience, I suffered with pain and fatigue from a young age; others have developed it after a traumatic experience such as a car accident.

The same can also be said for how it affects someone (how severe and long lasting symptoms are, as well as what can alleviate it). As my condition affects my mobility, I use a range of aids (such as a walker) alongside my support network (and a care plan) to help me manage my condition day to day.

I manage as best I can, and some days are complete write-offs, others I barely get by and a few good days where things seem more manageable.

It does sadden me though, that there are people in my life (such as my neighbours) and strangers who, despite having no medical training, seem content to throw in their two cents of how I manage my condition.

I’ve been advised that if I lose weight, took a specific diet or juice cleanse I wouldn’t need my mobility aids. In fact, many seem incensed that I should have the equipment I do, given my age – as if my disability has an age limit.

What frustrates me most is the people who assume that to be disabled, you must be in a wheelchair or missing a limb. A preconceived stereotype that I must conform to, because there’s little awareness as to what an ‘invisible disability’ is and what it means.

We may not fit into your stereotypical ideology of being disabled; such as we may not look disabled, we may be too young to be considered disabled or that we’re helpless; which is completely frustrating and humiliating.

I almost feel as if I have to justify why I am disabled, as if I need to show of my hospital letters and explain the equipment I used and how it helps me; and it’s not in a way that I could argue is educational or that I am raising awareness for my disability.

Instead, I feel like I am guilty of something, and that the only way to show I am innocent (and allowed things such as a walking stick) is by providing proof. As if I carry my medical information around to pass onto strangers who do not believe I can be disabled.

At its core, this attitude and negativity to those with hidden disabilities is ableism, which is discrimination and social prejudice against those with disabilities or those perceived to be disabled. It’s this belief that those who are considered ‘other’ (i.e. those with disabilities) require ‘fixing’ and in a way are defined by their disability.

In my experience, I’ve found that people mostly think they’re helping if they offer solutions for my disability by how I should manage my condition and care for myself (e.g. by losing weight or trying a particular diet); whilst, at the same time, I feel outed as something ‘other’ by having to justify my disability or by having comments or looks on my walking aids.

Ableism can also stem from this idea that disabled people cannot conform to an idealised version of ‘normalcy’, that by using equipment to help me facilitate day-to-day tasks is a burden for those who do not require any assistance to complete their tasks. As if I am taking away from others by asking for some accommodations to be made, or as if they are ‘in the way’ of others.

An example of this would be in my previous job, where I asked for some adjustments to be made to my desk and chair. I was then reminded of this when a manager commented, ‘look at all the adaptions we’ve made for you’ – as if that was justification that I needed to work more (at the risk of my health).

It’s disheartening to be met with such hostility whether it’s to be made to feel like a burden, feel like you have to justify any support/accommodation/equipment you may need or to be made to feel that you aren’t doing anything (and everything) to help you manage your condition (because if you did, you would be ‘cured’ by now).

No one should have to feel as if they’re ‘faking’ their disability or that they have to disclose (or justify) it; and if we do decide to talk about it, please do not assume you know what we need to do or that you know more than our doctors – you do not – so please listen to us when/if we ask for support (or any accommodations to be made).

An important aspect to remember about my disability is that I am still a person, and surprisingly, I do have feelings. I want, and deserve, to be treated with respect, dignity, and fairly. I want to be able to live my life as best as possible and whilst I know my disability will make that more of a challenge – it doesn’t mean I can’t.

It just means that I need to focus on taking care of myself whether that’s by doing my pain management, taking my medication, asking for support or using some walking aids to help me move. I don’t need a juice cleanse or a special yoga pose, and I don’t need your opinion on my condition or how to manage it.

Thank you for understanding.

~ Emily

* Blue Car Syndrome (otherwise known as the Baader-Meinhof Phenomenon) occurs when you something you’ve just noticed, like a blue car, suddenly crops up everywhere. You’re not seeing blue cars because there’s more of them, you’re just noticing them more.

* People who are considered ‘ambulant’ disabled, are those with a wide range of disabilities who are not regular wheelchair users.

* Widespread musculoskeletal pain is one of the many symptoms of Fibromyalgia; others include: muscle stiffness, low mood, fatigue, headaches, problems with memory (also, called ‘fibro-fog’. The condition can also come with co-morbidities such as Irritable Bowel Syndrome (IBS).

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