Living With an Invisible Disability: What We All Need to Know

Help and support for people living with invisible disabilities and why education is important for us all.

“An estimated 1.3 billion people experience significant disability - this represents 16% percent of the world’s population, or 1 in 6 of us.”
World Health Organization (WHO), Disability and Health

The UN’s International Day of Persons with Disabilities on December 3 takes the theme of transformative solutions for inclusive development, highlighting the role of innovation in fuelling an accessible and equitable world. Not all disabilities are visible of course, a fact we are increasingly reminded of.

What is an invisible disability?

An invisible disability is described by the Invisible Disabilities Association as “a physical, mental, or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses or activities”.

Conditions such as diabetes, asthma, migraine, schizophrenia and chronic obstructive pulmonary disease (COPD) are all invisible disabilities – there are many others.

Natasha Lipman suffers from Ehlers-Danlos syndrome (EDS), a connective tissue disorder causing frequent joint dislocations, pain, fatigue and gastric issues. She also has postural orthostatic tachycardia syndrome (PoTS), which affects her autonomic nervous system, and histamine intolerance, which can make her sick when eating.

Writing for Teva’s Life Effects about why the language around invisible illness matters, she explains: “Many people with invisible illnesses struggle to get a diagnosis because they look fine. They struggle to get government support that they’re legally entitled to because their condition is fluctuating and not well-understood. They struggle to navigate relationships of all kinds because people don’t ‘get it’. And they struggle to find or stay in employment because reasonable adjustments aren’t considered necessary for someone who can, on the surface, ‘push through’.”

Invisible disabilities at work

The workplace can be a difficult space for people with invisible disabilities and a place of misapprehension. A common myth about schizophrenia, for example, is that sufferers cannot hold a job. While unemployment among this group remains high, research suggests that work has many advantages for people with schizophrenia in providing a stabilizing or normalizing influence and improving general health and mental wellbeing.

Finding support in the workplace for conditions such as migraine can often be a challenge. After stress and exhaustion triggered a series of migraines in her early 20s, Michelle Rivas explains that finding the right treatment for her pain wasn’t the biggest hurdle she faced – it was convincing her boss that her migraine attacks were legitimate. “My manager back then didn’t think that migraine was ‘a real thing’. They believed that migraine was just another fancy word for a headache and an easy excuse to dodge work responsibilities.”

In What to Do If Your Colleagues Don’t Believe You Get Migraine Attacks, she points out that people have rights in the workplace and that she had in fact been discriminated against.

In the US, Migraine may be considered a disability that’s covered under the Americans with Disabilities Act (ADA) if it substantially limits, impairs, or interferes with your ability to complete one or more major life activity.

Teva’s workplace support for migraine sufferers

In Europe, the European Migraine & Headache Alliance (EMHA) has partnered with Teva to launch the Migraine Friendly Stamp, encouraging more inclusive, migraine-friendly workplaces. The goal is to help people with migraine feel more comfortable and less stigmatized in the workplace, reduce the impact of migraine at work, and recognize companies that undertake EMHA training and make actionable changes. In June 2022, Teva Pharmaceuticals Europe B.V. was accredited with this stamp.

The isolation factor

It’s not just about work, of course. Living with an invisible disability can be an incredibly isolating experience.

Danielle Newport Fancher describes the many times she’s hidden her condition from others, because she’s afraid that those around her won’t understand – revealing that often times, they don’t – or because she doesn’t want to be seen as a sick person. “A lot of times, we hide the pain because we don’t want to miss out on life.”

Sharing the realities of disability

Opening up the world to people of all abilities and disabilities is surely a good thing. Opening up to others can also be beneficial, as Barbara Moore found when she was diagnosed with COPD at 60, five years before retirement. Worried that her company would make up a reason to fire her, initially she kept silent but eventually decided to be open about her illness so others could understand and learn from it.

“Having an open dialog helps everyone to be clear about the issues at hand. My managers and colleagues even helped once they knew what was happening,” she says.

Opening up about her experiences also helped Danielle Newport Fancher and in doing so, she has helped to educate others about her condition. “I’ve realized that if I’m not championing change and educating others about the reality of my illness, the misconceptions will never go away.”

Living with a disability? Find support

Your local family doctor and Citizen’s Advice Center are good starting points to find useful resources to help you.

Teva’s Life Effects offers inspiration for patients and caregivers, sharing scientific research alongside tips, personal experiences and real-life stories.

Go online to find the latest information about your condition and access patient support communities – always ensure you are dealing with reputable sites however, check with your GP or healthcare provider if you have any concerns. Read our article on dealing with chronic illness in the Instagram era for more advice.

Not disabled but want to educate yourself?

Language is important when talking about people with disabilities. The American Psychological Association has published useful guidelines to follow when choosing words for talking about disability.

Familiarize yourself with the terms disabled communities use when referring to their conditions or the conditions of others, and avoid being condescending or sentimental. To find out more, watch the Things People Living With Disabilities Wish You Knew and read Life Effects writer Laura McKee on 10 Disability Terms I Hate.

Thought to take away

The WHO reminds us that “almost everyone is likely to experience some form of disability – temporary or permanent – at some point in life”. It’s important we all are able to deal with the subject sensitively and considerately

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