December 3, marks International Day of Persons with Disabilities (IDPD)—a globally recognized initiative by the United Nations to champion inclusivity, accessibility, and equal opportunities for people with disabilities, while celebrating their incredible contributions to society.
At Porterhouse Medical, we’re proud to support this important day. Amanda Weber, our Associate Director of Medical Writing, shares her personal journey of living with an invisible disability and offers insight on what ‘disability’ means.
What is disability?
The UK’s Equality Act of 2010 defines disability as “a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.”
How common is disability?
In the Western world, estimates show that about 1 in 5 adults self-report disability.[1] The World Health Organization reports that approximately 16% of the world’s population – or 1.3 billion people – live with disabilities.[2] Sadly, 80% of persons with disability live in developing countries, according to the UN Development Programme. This means they likely don’t have access to specialized social and economic supports like we do in the UK, US, or Canada.
Approximately one-quarter of people with disabilities use a wheelchair, other assisted device, or have an impairment that is obvious to others.[3] This leaves the remaining 75% with invisible disabilities! Invisible disability is challenging because it’s unseen, but it continually puts stress on family, friends, partners, and caregivers as well as the person with the disability.
Living with Invisible Disability 
By Amanda Weber
“But you look just fine!”
A friend with severe epilepsy, who is on multiple medications to control seizures and has undergone brain surgery, is no longer able to drive his truck or work in the construction industry as a self-employed contractor. On the outside he looks fine, like an average guy in his fifties with two kids, an ex-wife, and a dog. Based on outward appearances, you wouldn’t know the physical, emotional, and financial struggles he has endured.
Another friend is suffering lingering effects of a COVID-19 infection. She was previously healthy but now spends her weeks at respirology and cardiology appointments, trying to figure out the causes and solutions to her breathlessness, chest pain, and exercise intolerance. She’s afraid but hides it well from others.
A neighbour has become primary caregiver to both his partner and young daughter. His partner is experiencing another painful flare of an unknown immune condition and has just been discharged from hospital with no further answers. He is overwhelmed.
When I first considered the possibility of writing a short piece on invisible disability, I didn’t have to look very far for examples. They seemed to be all around me, reflected in the stories of individuals and families who are struggling with unanticipated challenges. But maybe I’m more aware of the presence of hidden disability because of my own experience.
Just over a decade ago, I developed a vestibular disorder that changed my life. It left me unable to work and care for my children. After a lot of rehabilitation, I have been able to return to employment, not in the career path I intended, but in one that accommodates me in what I can and cannot do. On good days, you may not know that there is anything wrong with me. On rough days, when using my cane, it would be obvious that something is a little “off”. On bad days, you would not recognize the person laying on the sofa who is unable to move.
I recognize that my situation is no different from the examples I shared. Many of us have endured invisible disability, defined 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.[3] Invisible disability encompasses so many possibilities: mental health disorders, developmental delay or learning disabilities, hearing or visual impairment, brain injury, and many other diagnoses. Regardless of the cause, it is the “hidden” symptoms and functional impairment that most often affect quality of life.[4]
As my long-COVID friend shares, “I have a certain amount of energy allotted for each day. I must choose wisely.” She doesn’t need to say any more than that. I get it.
In our working lives, it is more than likely that each of us has a colleague who has an invisible disability, one which they may have chosen not to disclose, or they have disclosed to a few select people so they can ask for support when they need it. It takes a lot of energy and courage to move in a world when we feel vulnerable. It’s important to be kind to each other because we never know what another person is going through. If we keep our eyes open, we will see each other for who we truly are, and we will be ready to offer and receive support whenever it’s needed.
References
1. Gagliardi, J. Prevalence of disability in the UK in 2022/23, by region and by country. Statista (2024). Accessed from https://www.statista.com/statistics/449271/disability-prevalence-region-united-kingdom-uk/.
2. Disability. World Health Organization (2023). Accessed from https://www.who.int/news-room/fact-sheets/detail/disability-and-health.
3. What is an invisible disability? Invisible Disabilities® Association (2022). Accessed from https://invisibledisabilities.org/what-is-an-invisible-disability/.
4. Gustavsen S, et al. The association of selected multiple sclerosis symptoms with disability and quality of life: a large Danish self-report survey. BMC Neurol 2021;21:317.
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