Many people ask me things like this: I have a chronic illness. Does this mean, that I am disabled? Is chronic illness the same as disability? What is the difference? Am I allowed to call myself disabled? Am I disabled enough?
These are questions that do not have a one-fits-all answer, it really depends on the situation. In this article, I will try to explain my thoughts and why I personally identify as disabled. (And why there’s no reason to be ashamed for that!)
When I became chronically ill, it took me a while to realize, that what I have is actually a disability. But Why did I struggle for so long to realize that- and what was so hard about coming to terms with this? And why do many people with chronic illnesses feel that they are not allowed to call themselves disabled?
Before I go into is further, let’s look at the definition of disability:
“A disability is any physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person's ability to engage in certain tasks or actions or participate in typical daily activities and interactions.”
So, if you have a condition that limits you in your daily life and prohibits you from certain activities, then you are technically disabled.
Are all people with chronic illnesses disabled? No, because one thing is important: it is up to the person to decide, how they wish to identify, and what feels right for them.
What does that mean?
Let’s look at the definition of chronic illness:
“A chronic condition is a human health condition or disease that is persistent or otherwise long-lasting in its effects or a disease that comes with time. The term chronic is often applied when the course of the disease lasts for more than three months.” (source: Wikipedia)
“Chronic diseases are defined broadly as conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both.” (source: CDC.gov)
When researching a definition for the term chronic illness I soon realized, that there isn’t really a uniform definition of the term. Some define it as a condition that lasts for more than three months, but I have also seen 6 months or a year as the marking point.
But you can see in the definition of the CDC, that one factor they include is the need for “ongoing medical attention and limitation of daily living”, and this seems to intersect with the idea of disability.
I think the reason why you can hardly find a unified definition is the fact that chronic illnesses are extremely diverse and individual from case to case.
Some people have chronic illnesses that can be very limiting and disabling, some are not interfering with daily life that much.
So not all people who have chronic illnesses are also disabled, and vice versa!
Also- two people with the same illness may have completely different experiences, so you can’t really generally say, that someone with illness xyz is automatically disabled. It depends very much on the individual situation.
So how can we determine if we are disabled or not?
Is there a way to “measure” disability?
Let me start with saying, that measuring disability, in my opinion, is not helpful and comes from a very ableist mindset of needing to compare people and their levels of functionality against each other. It is also greatly influenced by the way insurances and welfare agencies work. But it can be necessary in getting some accommodations, for example in the workplace, if you need them.
Let me explain:
In Austria, where I live, you can apply for an official “grade of disability” and a certificate of disability in the ministry for social policy. During the application process, you offer your medical history and depending on your limitations and your needs, you will get a percentage of disability, ranging from 10% to 100%. But you can only get a certificate of disability, and the benefits that come with it, with 50% or more. With this, you will be eligible for tax reductions or have a legal right to accommodation in the workplace and a protection from being fired because of your disability.
On paper, this sounds great, but this process has some downsides to it, that you only really know once you’re in the “system”.
The way in which these percentages are determined can be pretty random and often depends a lot on the person that reviews your case. There are catalogues for certain illnesses and how much of a percentage of disability they would get, but the thing is: the catalogue is pretty incomplete. For example, my illness, ME/CFS is not listed anywhere in this catalogue because it is too unknown. So, I had to bring documents of some of my comorbidities in order to be eligible and hope for a nice doctor to review my case. In the end, I got 30% of disability (thanks to some of my medical documents that they could “count”), even though with ME/CFS my actual reduction of functionality is probably more than 50% compared to a healthy person- but since my diagnosis isn’t listed in their catalogue, I wasn’t eligible for more. So, officially I am disabled, but not disabled enough to get any of the benefits. (And my adviser even said that I was lucky to get that because many people are just dismissed at their first try).
And believe me, I am not the only one who made such experiences. I know many other people with ME/CFS, some who are even worse than me, who didn’t get even 1% because of the lack of the diagnosis in any catalogue, and sometimes you’re not so lucky to have a nice and forthcoming doctor to review your case. Many people are just being dismissed at the first try. It is common knowledge, that many people have to try more than once and get legal assistance, if they want to get a certificate of disability, because they are really hard to get.
So, is this “percentage” of disability a good representation of how disabled someone is? On paper, maybe, but in reality, absolutely not. These “grades of disability” are more of an institutional and bureaucratic tool. In reality, it may not an appropriate measure to describe someone’s actual level of disability, seeing how many people just fall through the cracks. And also: let’s not forget about those who are unable to go through all the bureaucratic jungle in order to be eligible! The whole progress was pretty complicated, and if someone doesn’t have someone to advise them or is not able to articulate their situation very well, they can have a disadvantage. So even if you are not disabled by “official” measures, in reality you may still be disabled.
What about the ability to work?
Many people ask this question when it comes to disability: are you able to work or not?
The idea is that if you are able to work, you are not disabled, and if you are unable to work, you are disabled.
Let me explain why I am not a fan of this categorization:
The ability to work is not the most important thing in life. (Even if we are sort of brainwashed to think this way).
Some people have a chronic illness and are still able to work, some or not.
I know people who have conditions that require lots of medical attention and a special diet, for example, but with certain medications, therapies and maybe some accommodations or support from family members, they are largely able to live their lives independently and work full time (or part time). But that doesn’t mean their chronic illness is not there anymore, it just means, that they are at a level where they can treat their symptoms to a point that allows them to work. Maybe they have a very well-known illness and got a 50% grade of disability, which would protect their rights in the workplace, so on paper they may be “more disabled” than someone who is unable to work but just got 30% or less, because their illness isn’t that well known or they weren’t so lucky in the process.
Does the ability to work make these people any less disabled? No, it just means that it affects them differently.
And then there are those who have a chronic illness that is extremely limiting, but they may look fine on the outside and are in a situation, where they constantly have to explain what is “wrong” with them and why they don't just “get a job”.
The reality is: even two people with the same exact illness can be affected in completely different ways. There are people who have mild ME/CFS and who are able to work, and there are people with severe ME/CFS who are bedbound.
Some people with a certain illness are able to work, but are unable to do anything else in their free time because in order to work, they have to use all the energy they have and sacrifice everything else for that. And we also need to keep in mind, that not every job is the same and it depends a lot on the type of work, if someone with a certain illness is able to continue in their field or not. If you have a physically demanding job outside, your situation is probably very different to someone who has a job that allows you to work from home.
Every case is different, and every story is individual.
Why call yourself disabled?
As I described above, a “grade of disability” may be necessary to be eligible for accommodations and protection in the workplace, or other things like a parking ID. Identifying as disabled can help people to stand up for themselves and define their needs, and it allows them to make sure that their needs are met. In that sense, it can be very empowering, because you realize that there is nothing “wrong” with you, you just have different medical needs than other people, and that’s ok.
I also realized, that many of the things that impacted me in my life or affected me negatively, were connected to ableism, and that there was nothing wrong with me as a person, but with how society treats people who suffer with chronic conditions.
So, when can you call yourself disabled?
Do you have a condition that is limiting you in your daily life? Do you feel impaired and unable to do things you were able to do when you were healthy, or compared to non-disabled people? Do you need a lot of help or accommodations to get by in daily life? Then you can probably call yourself disabled – if this is what feels right for you.
But why is that so difficult?
The thing is- we grow up with a very one-dimensional picture of disability. When we hear the word, we immediately think of a wheelchair, or other visual indicators of disability. When I was younger, I was completely unaware of the fact that most disabilities are not visible. We also learn that disability is something static, something that you either have or don’t have, and that stays the same throughout your whole life.
In reality, disabilities can be dynamic! Many people have chronic illnesses with symptoms that vary from day to day, which also makes their needs vary. Many people experience “good days” where they are not as limited and are able to “function” normally, followed by “bad days” where their functionality is limited. There are also many illnesses that can flare up, because of triggers or fluctuations in symptoms, which can lead to functionality and needs varying a lot. Since the picture of disability we grow up with is very static and one-dimensional, we may think that we can’t call ourselves disabled, because we have good days too and maybe we don’t always have the same needs.
Since I do not have a wheelchair or other mobility aids (which my insurance probably wouldn’t allow me anyways since my legs still work… but that’s a whole other issue) I didn’t even think of myself as disabled at first, because clearly, I didn’t fit into that picture. I had to learn a lot to become aware of the fact, that there is much more to disability that what we are taught, and that disability means so much more than using a wheelchair.
To read more about the topic of dynamic disabilities, I can highly recommend this article by Brianne Benness: https://medium.com/age-of-awareness/my-disability-is-dynamic-bc2a619fcc1
The stigma of disability
Since we live in a society that is shaped by capitalism and ableism- disability is often perceived as something negative. It is a word that has so much stigma attached to it (especially in the German language, where the word “behindert” is also commonly used as an insult), that it can be really hard to identify with it. We live in a world, where being sick, needing help, not being able to be as “productive” as possible is seen as a sign of weakness, or as a character flaw or a personal failure.
When there is so much stigma and shame connected to a word, it can be really hard to identify with it.
So, when you become chronically ill, it can be a struggle to come to terms with the fact that what you have is a disability, and it may take a while to get used to the idea.
To read more about how to overcome internalized ableism: read my last article here!
Should I identify as disabled when I’m chronically ill?
This is completely up to you, and a very individual decision. You can ask yourself this:
Does it feel right for you?
Does it help you to stand up for yourself and ask for accommodations?
Does it help you in clarifying your needs?
Does it help you to make yourself feel seen?
Does it help you from a legal standpoint, for example to make your workplace more accessible?
Does it feel liberating or empowering?
Coming to terms with the word “disability” can be very hard, but liberating and empowering at the same time.
This is why, in my opinion, education and awareness about this topic are so important. We need to raise awareness for what it is really like to be disabled, to de-stigmatize the word and we need our voices to be heard. Social activism must be more intersectional and inclusive for those with disabilities. We need to erase the taboo that is connected to the topic and make the world realize that being disabled is ok.
Owning the word has been a very helpful process for many people, because it allowed them to stand up for themselves and have their needs met. Some people describe that getting a mobility aid, for example, was the best thing they could do for their bodies, but it took them a while because they were ashamed to take that step for years - thinking it may hold them back, when in reality it allowed them to live a more happy and accessible life. I’ve heard many people say “I wish I did it much sooner!”
We live in a world where many people are still advised not to disclose their disabilities in the workplace, not to take too many sick days, and not to ask for “too much”, because it may lead to their dismissal.
Disability is still often seen as something “bad” or “undesirable”, and people are made to feel like they are “burdens” if they ask for help. This needs to change.
This is why I find it so important to fight against the stigma of disability, because by talking more openly about it, it can help more people to identify their needs, without the feeling of being “weak” for doing so. Getting mobility aids or accommodations can be an extremely liberating thing.
This is what I am fighting for. If you need any help in your daily life, you shouldn’t be ashamed to ask for it. Your needs are your needs, and it doesn’t make you a bad person.
Being disabled is not a bad thing- it just is what it is.
And very importantly: Disabled is not a bad word.
De-stigmatization and education matters.
Do you identify with the term of disability? And what helped you to embrace it?
I am excited to hear your stories and feedback.
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