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invisible disability

What it's like to have an invisible disability

In the UK, there are approximately 13.9 million people living with a disability. But only a small percentage have illnesses that can actually be seen. Those living with an invisible disability, like Crohn's disease or multiple sclerosis, suffer from symptoms every day and, because these aren't visible, they're often subjected to discrimination and misunderstanding when they use disabled bathrooms, parking spaces or priority seats.

Marta, a new mother and fashion textiles sales administrator, was diagnosed with Crohn's disease in 2007. It causes symptoms including abdominal pain, tiredness and fatigue, vomiting and diarrhoea multiple times a day, and dramatic weight loss. Although Marta looks perfectly healthy, her condition has a major impact on her day-to-day life.

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Living with Crohn's

A form of inflammatory bowel disease, Crohn's is a chronic condition that causes inflammation in the digestive system. It is a painful, debilitating and widely misunderstood condition and there is no known cure.

Dr Charles Andrews, a GP at Sunnyside Surgery says: "From my own experience of having the disease, and from patients I see in clinic as a GP on a regular basis, sufferers can often look very well outwardly, but they can have very significant symptoms."

Marta was in remission for around eight years until she gave birth to her daughter and contracted sepsis after an emergency caesarean, which triggered a huge relapse.

"I started having flare-ups again: diarrhoea several times a day, vomiting a few times a week, my body was always aching, and I had a fever every evening. Life with a newborn baby was incredibly difficult. I couldn't hold her, and everyday tasks like cleaning and cooking seemed like a struggle. My husband had to take a lot of time off work to look after us - sometimes paid, sometimes unpaid."

"Since then, I haven't really had a good day and my symptoms continue. I have lost a lot of weight. Sometimes, I explain to my husband that it's like a person is scratching the inside of my bowel with long nails. On top of that, I also get infections, which escalate quickly, and am admitted to hospital every second month."

Leaving home comes with anxiety

One of the major anxieties for people living with Crohn's is not being able to find toilet access or being confronted as to why they are using a 'disabled' facility. This has left Marta unable to leave the house through fear of needing the toilet urgently.

"I don't go out to public places, like restaurants, cafés or bars. I've had a few accidents where I couldn't find a public toilet, and this really affects your self-confidence as well as being embarrassing. I'm lucky that I have a car, so afterwards I could just get in and drive."

She explains: "People can also be unsympathetic if I have to use the disabled toilet, because I look perfectly well. I'm always worried about being challenged by someone when I come out. On one occasion, I ended up staying in a public toilet for some time and could hear people starting to complain and tut outside.

"I now keep a little play area in the toilet at home for my baby to occupy herself as I need to spend so much time there."

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The psychological impact is huge

"Even though I have this condition, I always try to stay positive. But, I am not going to lie to you, I have cried a lot in the past year and a half and I am really not the person who does that. I'm an extremely strong and independent woman, and I hate relying on my husband - so it's been tough. I just want to wake up and feel good again and have a day that I don't have to worry about getting to 7 pm because I know that's when my fever kicks in," says Marta.

She describes how isolating the condition can be as it is difficult for people to understand an invisible disability.

"It's just impossible to explain my condition to people, so I've literally hidden it since the beginning because there's no point in explaining what I have - they don't understand. Even close friends and family members have given advice on what I should eat and see it as a food intolerance condition - when actually it's so much more than just that."

"It's extremely frustrating living with an invisible disability. If you see a person in a wheelchair, you accept that this is a disabled person. My sister has rheumatoid arthritis and sometimes she limps and her joints are extremely swollen. I joke to her that at least people can actually see that she has a condition when that happens."

But like other invisible conditions, some arthritis symptoms, such as pain and fatigue, may not be immediately obvious. The symptoms can vary from day to day which can also make it hard for some people to understand.

How to help someone with an invisible condition

Whether you realise it or not, someone you know may be living with an invisible disability. You can support them by doing the following:

1. Don't judge a book by its cover

If someone has inflammatory bowel disease and they say that they are 'flaring', this means that, although they may look well on the outside, they are not well on the inside, says Andrews. And it's the same for anyone with a chronic, invisible condition.

"They are likely to be tired, and suffering abdominal pain and diarrhoea, which may mean that things they would normally not struggle to do may become far more challenging - from jobs around the house to work and studying commitments. Being considerate and understanding of this can help people with the disease."

2. When you gotta go, you gotta go

Because some invisible conditions cause an urgent need to go to the toilet, people with these symptoms should be able to use disabled toilets and be prioritised in toilet queues.

"Incontinence is a very unpleasant and upsetting symptom - take it from someone who has experienced it during the course of his own illness! It can be very lonely if people feel they can't leave the house through fear of not being able to access a toilet when they need it," explains Andrews.

3. Show sensitivity and understanding

Talking openly about bowel symptoms - how often you go, what consistency it is - is not something people often feel comfortable doing. Some may feel embarrassed, and may even think it's a taboo subject. According to Andrews, people with inflammatory bowel disease may feel that others perceive them to have an 'embarrassing' condition, and therefore may be reluctant to talk about it.

"They can, therefore, feel like they have to deal with their condition by themselves. It's important to be sensitive and understanding if someone with a bowel disease talks to you, as it may have required a lot of courage to do so," he says.

Marta is a campaign ambassador for the Not Every Disability Is Visible campaign, which is calling for the general public, companies, and the Crohn's and Colitis community to come together to change accessible toilet signage and more importantly, attitudes.

Article History

The information on this page is written and peer reviewed by qualified clinicians.

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