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.
“Over 1 billion people live with some form of disability - this corresponds to about 15 percent of the world’s population.”
World Health Organization (WHO), Disability and Health.
The International Day of Persons with Disabilities on December 3 takes the theme of building a disability-inclusive, accessible and sustainable post-COVID-19 world. Not all disabilities are visible of course, something we were increasingly reminded of during the pandemic when people with certain conditions were exempt from wearing masks.
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, chronic obstructive pulmonary disease (COPD) and chronic fatigue syndrome 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’.”
Living with migraine
Migraine is one of the world’s most common health conditions and the most common neurological disease, according to Migraine.com. Approximately 39 million people in the US and 1 billion worldwide have migraine, making it the third most common illness globally. Despite this, the WHO record that only 10% of those who have migraine worldwide are professionally diagnosed.
Those who suffer often suffer in silence and may find it hard to access the support they need. Talking about the struggles of living with an invisible illness like migraine, Daisy Swaffer says:
“There are many things that must be managed to lessen the impact of migraine on my life. Sometimes these things also require concessions or allowances from other people. If my disability were visible, I believe I would receive this. But as my condition is invisible, I am often ignored and treated poorly for even asking for help.”
Invisible disabilities at work
The workplace can be a difficult space for people with invisible disabilities. 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.
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.”
What we have learned from COVID-19
These days, after living through a worldwide pandemic, a lot of us know much more than we ever did about the stressful effects of isolation. Ironically, for people with disabilities, COVID-19 brought some positive changes – changes that the disabled and chronically ill communities have needed for a very long time, such as the ability to work, socialize and access medical appointments from home.
Discussing what COVID-19 can teach us about accessibility, Sarah Alexander-Georgeson points out that “many non-disabled people are now experiencing what it’s like to have barriers preventing them from participating in everyday society. Contrastingly, however, the world has now opened up for those living with disabilities, as virtual ways of living mean they now have the ability to work, experience culture, and socialize, all from the comfort of home”.
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 misconception 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. You can access content from Teva’s US and European sites, as well as the Tevapharm.com global platform.
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, because disability represents a form of diversity, similar to gender, race and ethnicity. 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.
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
At Teva, inclusion and diversity are core values that inform our entire organization. Read more
Mental health for all: shining a spotlight on the disparities in mental health care. Find out more
Be a part of our important work. Find out about working at Teva