Inspired by the KTMY post ‘Am I Disabled? Why you should define chronic illnesses as a disability’

Does ‘Invisible Illness’ Equal ‘Disability’?

 

Controversial but a hotly debated topic for those within the chronic and invisible illness community.

Lots of questions get raised such as:

What is a chronic illness? 

What is an invisible illness?

Should this conditions come under disability?

What exactly is disability?

How do we measure this?

How does labelling those with chronic and invisible illnesses as ‘disabled’ impact on them?

How do you define your own disability if you have an chronic or invisible illness?

I’ll try and answer as much as I can, but the crux of this post is,

Do I consider myself disabled?

 

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An invisible illness is an umbrella term for any medical condition that isn’t easily visible to others. Usually, an invisible illness tends to be a chronic condition too. Examples of these can be Arthritis, Diabetes, Crohn’s Disease, Fibromyalgia, Ulcerative Colitis, Asthma, Ehlers Danlos Syndrome, Endometriosis, Depression, Epilepsy, Lupus, Chronic Fatigue, Anxiety, Bipolar and others.

Let’s start by looking at how the Law defines disability:

Under the Equality Act 2010, you are defined as disabled “if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

It is important to note the inclusion of physical and mental impairment to this act. This allows mental health disorders to be includes, but also allows the mental impact of a chronic illness to be valued too.

The Equality Act 2010 legally protects people from discrimination in the workplace and in wider society. It replaced previous anti-discrimination laws with a single Act, making the law easier to understand and strengthening protection in some situations. It sets out the different ways in which it’s unlawful to treat someone.

Specifics for IBD: 

“The Equality Act 2010 defines disability as a physical or mental impairment which has an effect on a person’s ability to carry out normal day-to-day activities. This includes ‘hidden’ impairments or disabilities such as incontinence. The effect must be substantial, adverse and long-term. For example, the loss of bowel control is considered substantial and adverse if it is unpredictable and leads to immediate major soiling, even if it is infrequent. Minor but frequent loss of bowel control may also qualify as substantial and adverse. Long-term is generally taken to mean the effect has lasted, or is likely to last, at least a year.

The fact that your IBD is a variable condition, generally with good days and bad days, does not affect your rights. The main point is that the overall effect is long- term.

Importantly, in most cases, treatment for a health condition is not considered when deciding if someone is disabled under the law. This means that you may still benefit from the protection of the Equality Act even if your symptoms are controlled by medication.”

Simply put, IBD can be defined as a disability under law but it is dependent on the individual’s want to stake a claim and label in some circumstances.

The ‘Grey Area’ of chronic illness

It does seem that the choice to use “disability” is more tied up with receiving needed accommodations or services – a more public term – while chronic illness is a more private understanding of the ebb and flow of invisible illness outsiders might not get.

Despite the fact that many patients with chronic illness also fit under the umbrella of disability, some distinct differences remain. Reading on the subject, I’ve been amazed at the wide variety of chronic conditions out there. As patients, those with chronic illness have so many different needs and challenges; for example some non life-threatening conditions can be really incapacitating, where as some life-threatening conditions can have the appearance of relative functionality. What is key is just how quickly things can change for people living with these conditions.

 

What comes away from this disability debate is the misconceptions of what ‘disabled’ should look like to the general public. It is disheartening because not only are we suffering the symptoms, but we also have to then defend ourselves or try to prove to others that we are ill – and that only creates more stress and sickness.

Living with an invisible illness often leads to judgement and criticism because others believe you look fine on the outside, and therefore must be “making up” your suffering.

Unlike having a condition that’s observable, those with invisible illnesses often face a lack of social awareness and additional stigma, As a result, these individuals often face more scepticism, and are accused of being lazy or moody and in need of cheering up, going out more, calming down, or a host of other dismissive judgements.

To complicate matters, like many chronic conditions, mental illnesses tend to ebb and flow in severity — some days, weeks, and months go really well, and during others it’s difficult to work, socialize, and function, confusing those who can’t “see” why one day is good and another a challenge.

Why should I ask the question, Am I Disabled?

  • Sometimes a label can help a sufferer feel more at peace with their condition
  • It is helpful when coming to apply for new jobs, and starts a discourse between employees and employers for better disability rights for any one else.
  • It is hard to do everything a healthy person can do, allowances and adjustments can be made so you feel more comfortable, especially at work and school.
  • For patient advocates it can be valuable to discuss the discourse in public, especially for fellow sufferers who don’t want to.

My question to you, reader is:

How do you define your own disability if you have an chronic or invisible illness?

 

Do you have any questions or queries? Or just want to share your own experiences? You can leave me a reply here or leave comments via my social media accounts – on Twitter, find my blog page on Facebookand over on Instagram

Further Reading: