Chronic Illness and Disability: The Neverending Debate I Have With Myself

A couple of weeks ago (at the time of writing this), I filled out the 2021 census. Most questions were straightforward. Even when I reached the topic of health, I had no problem declaring myself as someone with a long-term health condition which involves flare ups. I mean, that’s one way to sum up Crohn’s and indeed many chronic illnesses.

When the next question came up though, I was stumped. It said “How would you define your health?” or something to that effect. The options were a) very good b) good c) fair d) bad or e) very bad.

It depends on the day.

My immediate reaction was that ‘very good’ was out of the question because of my chronic illness, that much was true.

Choosing between the rest was harder because for me, it depends on the day. Chronic illness is something that can fluctuate and you can go through flare ups and periods of remission. When I was filling out the census, I was actually having a pretty good day for me in terms of my health.

However, I also thought back to the times in hospital when the only way I could describe my health would be horrendous.

I ended up choosing the middle ‘fair’ as a means of trying to sum up the good and bad periods of chronic illness.

Am I disabled if I have a chronic illness?

The census debacle and having to choose how to identify my health, and from a wider view, myself also got me thinking about disability and chronic illness.

Over the years, there have been many moments filling out forms and paperwork where I reach the question ‘Do you have a disability?’ or ‘Do you consider yourself as disabled?’.

Pre-Crohn’s, I would always tick the ‘no’ box. Unless, however, a question included the phrase ‘long-term health condition’ alongside disability. In this case, I would tick ‘yes’ to factor in my NF1 and aqueduct stenosis/hydrocephalus/enlarged ventricles – it’s gone by multiple names over the years.

After my Crohn’s diagnosis though, this question became harder to answer.

It would depend on what my health is currently like and why I was having to declare if I had a disability. Sometimes I said yes, sometimes I said no.

When declaring chronic illness as a disability is important

There are times when it is really important to declare your chronic illness as a disability, even if you are going through a period of remission and feeling pretty good.

University was a big one for me. After my diagnosis, I let my university know, and they were understanding and made many adjustments to allow me to continue my studies as smoothly as possible with a chronic illness.

I accessed the disability services at my university, it was easier to push back deadlines if I did have any health issues, exams could include breaks and toilet trips if required, accommodation adjustments were available, and all-in-all, I was able to access better support to help with my studies and felt reassured that people were aware of my situation.

Getting support and adjustments for your health goes further than education too.

Moving into adulthood, declaring that you have a disability can also help with getting support in your workplace, financial benefits such as the PIP and Universal Credit, or even finding a job to begin with. Charities such as Astriid are connecting people with chronic illnesses to companies that provide meaningful work, are inclusive, and work with you to make the right adjustments for you – although all companies and employers should be doing this anyway!

The definition of disability

When you look at the textbook definitions of disability, chronic illness does in many regards come under the meaning.

An illness, injury, or medical condition that makes it difficult for someone to do the things that other people do.

Cambridge English Dictionary

Our society has stereotyped a disabled person to be someone who requires mobility aids such as a wheelchair or a walking stick, and can lead to people with chronic illnesses and other long-term health issues not feeling comfortable identifying as disabled, scared of people not believing their disability, and not knowing where they stand.

The reality is this is not the case. Campaigns such as Not Every Disability is Visible are striving to change this.

What does the Equality Act say?

The 2010 Equality Act, designed to protect people from workplace and societal discrimination, further defines disability as:

A person has a disability for the purposes of the Act if he or she has a physical or mental impairment and the impairment has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities.

This is further developed into:

• sensory impairments, such as those affecting sight or hearing

• impairments with fluctuating or recurring effects such as rheumatoid arthritis, myalgic encephalitis (ME), chronic fatigue syndrome (CFS), fibromyalgia, depression and epilepsy

 • progressive, such as motor neurone disease, muscular dystrophy, and forms of dementia

 • auto-immune conditions such as systemic lupus erythematosus (SLE)

 • organ specific, including respiratory conditions, such as asthma, and cardiovascular diseases, including thrombosis, stroke and heart disease

• developmental, such as autistic spectrum disorders (ASD), dyslexia and dyspraxia

• learning disabilities

• mental health conditions with symptoms such as anxiety, low mood, panic attacks, phobias, or unshared perceptions; eating disorders; bipolar affective disorders; obsessive compulsive disorders; personality disorders; post traumatic stress disorder, and some self-harming behaviour

• mental illnesses, such as depression and schizophrenia

• produced by injury to the body, including to the brain. 

The very inclusion of auto-immune and fluctuating conditions classifies chronic illness as being a disability and is even more reason why it is vital to declare your long-term health condition as a disability in areas such as education and work.

On a personal level

Although I now always check the disability box, on a personal level, it is still something I struggle with because whether I identify as disabled or not depends so much on the current status of my health.

When I’m going through a good period of health, I don’t see myself as disabled. I can still work, travel, and do the things I want to.

When my health is in a bad place though, I am disabled, as hard as that was to admit to myself at the start. Thinking of times when I’ve been in hospital, I struggled to eat properly, go to the toilet normally (ah the joys of having bowel issues), and I’d need help just moving around or doing simple everyday tasks such as having a shower.

These two sides of the coin mean I still don’t really know where I lie. Perhaps a middle-ground option is needed?