This week was Invisible Disabilities Week. I was unaware of this until yesterday, which shocked me because I myself have an invisible disability – well a few actually. Interestingly, I asked the people in my life and they they didn’t know about it either.
After spending some time being mad at myself for not knowing and generally mad at society for a whole heap of things, I decided to take to writing, my usual creative outlet. So here we are; I want to raise awareness of invisible disabilities, educate others on what they are, and show how people can become allies for the disabled community. Most importantly, I also want to talk about my story, in the hopes that it will make someone else feel less alone in theirs.
Accomodation is a massive issue in our society, because our world was built for abled bodied and neurotypical people, and that has got to change. Especially when one in five people in the UK live with a disability (and about 80% of these are invisible).
We have to create a world where everyone’s needs are accommodated, those who need adequate accessibility are provided with it, and where those with disabilities have the same chances in life as everyone else. Disabled people are no less capable at achieving their goals, but the limitations placed on us by society makes things difficult.
You don’t have to understand someone’s disability or diagnosis in order to accommodate for it, you just have to value and respect that person enough to do it.
Simply put, an invisible disability is a physical, mental or neurological condition that is not visible from the outside, yet still limits an individuals movements, senses, and activities. Unfortunately, the fact that these symptoms are invisible leads to grave misunderstanding, false perceptions and harsh judgements.
When we define invisible disabilities, we often refer to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, learning difficulties, sensory issues, hearing or sight impairments etc. These are seldom immediately apparent and a lot of the time, they are not apparent at all. Just because we can’t see something, does not mean it isn’t real and debilitating.
What many people don’t consider is what goes on behind the scenes. When people eventually see, they see someone who is ‘sick’ but it’s not just that, it comes with a whole other bundle of things. It can leave you isolated, you have to learn all of this medical terminology, learning how to navigate the health-care system, planning and managing appointments and medication, ever day is unpredictable, there is a lot of financial stress because being disabled is far from cheap and constantly having to fight for help because doctors do not understand what they can’t see.
Our bodies are raging a war inside themselves 24/7. It is a constant uphill battle that’s made even harder by lack of accommodation and accessibility. Those with invisible disabilities are often deemed ‘lazy’, and this can be really hurtful, but laziness is just a term used to marginalise those not able to work or act how society has decided they should act.
How to be an ally…
Educate yourself
Learn about the different invisible disabilities, understand what it means to be ableist, and look into the millions of reasons why accessibility matters. You can find out more here.
Respect individual experiences
Acknowledge that everyone is different and there are a number of ways in which people experience disability. Listen to people’s individual stories and understand that everyone will have their own view or perspective.
Make content available for everyone
No matter what you do – podcasts, websites, journals anything – make it accessible. Seeing the news about subtitle issues on Channel 4 this month, it’s clear that we can all do better.
Advocate
Be part of the progress even if you don’t have a disability yourself. Speak up for those who can’t speak for themselves, call out ableism, and know that it is always better to be an imperfect ally than not be an ally at all. It”s a learning process – you will make mistakes and that’s OK as long as you recognise them and go forward from there.
Little things you can do for those close to you
- Listen – feeling seen and heard is so important when you have an invisible disability
- Check in with them to see if they have eaten, drank water and taken their meds
- Be there and lend a hand if needed
If someone close to you has a disability you have to take that into consideration everywhere you go. You have to think about fatigue, pain, flare-ups etc. because we are so used to accommodating others in fear that we will disappoint them by not physically being able to do something.
More often than not, we end up masking how we feel in order to not be a burden or to keep up with our friends and this becomes exhausting. You can do this through small things like checking the accessibility of the places you are going, asking how they feel, and reassuring them that they are not a burden and that whatever they need will be accommodated to the best of your ability.
I have fibromyalgia, one of the UK’s most overlooked invisible disabilities. Now I know what you’re thinking: WTF is that, or at least that’s what I thought when I was first diagnosed last year. The awareness is lacking and the research is almost no- existent so if you don’t know what it is, I’m not surprised, but you will do by the end of this and if you do know what it’s like to live with, I am very sorry.
In short, it is a chronic illness that causes widespread pain all over the body. Basically, my nervous system is screwed and the process of pain messages that are transferred from the brain throughout the body are all messed up, so they tell me I’m in pain, almost everywhere, all of the time. Only it’s not just pain – fibromyalgia causes extreme fatigue, insomnia, weakness, digestion issues, nausea, muscle stiffness, issues with mental processing (such as problems concentrating and memory loss – we call this brain-fog or fibro-fog), and increased sensitivity to things like light, sound and pain.
There is no cure and most medications don’t help. Many doctors are seriously lacking in their knowledge about it. What’s most difficult though, I think even worse than how it physically and mentally makes you feel, is how society sees you, or doesn’t for that matter. When you have a chronic illness but you don’t look sick, people begin to assume things: they assume you are faking or that it isn’t that bad, and the feeling of complete invalidation really impacts how you see yourself and your illness. You begin to feel like that fake that people see you as. You are in excruciating pain all the time, struggling to accomplish simple tasks, but you look fine so people assume you are lazy and not truly ill and then you start to believe it yourself.
There’s also a lot that doesn’t get recognised with this disability, like how difficult brain fog is – we laugh about the funny parts because I will be honest, there are a lot of funny parts (like putting the the tv remote in the fridge or walking into a room and not knowing why you’re there, for the 5th time that day) but there are moments that we don’t talk about, where you feel like you are forgetting everything, how uncertain it makes your reality seem or how unstable it can make you feel and how scary all of that can be.
I am incredibly stubborn and probably push myself a little too much, but I often get mad when I’m not able to do the things that people my age can do without any issues, it’s incredibly frustrating. In our society, we are conditioned into thinking that our value is defined by how productive we are, and although this could not be further from the truth, some days my brain needs a lot of convincing. Living with life-changing symptoms everyday and never knowing what to expect in the morning is hell, and on really bad days it can be difficult not to snap at loved ones – when your body is screaming at you, your mind is foggy, every joint is in endless pain. Your pain just spills into your words, making them as sharp as the harm you experience and you hate yourself for it. But you shouldn’t, and this is something you learn the longer you live with it – that it’s hard and you’re allowed to say that it’s hard.
This is a quote from a hematologist who understands chronic pain better than most doctors and specialists:
“Chronic pain patients hide it so well, you can’t go by how they look on the outside. They have to learn how to function with pain, you can’t just roll around on the floor all day screaming in agony. Medical personnel in hospitals don’t even realise this. A chronic pain patient can function with a level of pain that would incapacitate any other person.”
There isn’t much we can do about the latter – new studies and research have begun and hopefully, in time, we will be more knowledgeable. For now, we can raise awareness, educate others and support each other.
If you know someone with fibromyalgia or another invisible disability, give their pain and distress space to breathe outside of their body. Let them rant. For those who are struggling: I know how tough things can become, but please know that you are not alone and no matter how much society tries to invalidate you, your disability does not define you and everything you are feeling is valid.
If you have an invisible disability, please look at these links for support:
FMA UK – FMA UK – UK’s National charity for fibromyalgia (fibromyalgia-associationuk.org)
Home – Invisible Disabilities® Association
Feature Image Credit: @practically_chronic
