Cystic fibrosis: My invisible disability
I’ve lived with this debilitating illness all my life, yet people still shame me for using disabled services. It has to stop.
Exclusive | 2 min read | Invisible Disabilities Week 2020
On the outside I look 'healthy’ so unless I tell you, or you know me and the details of my medical history, you wouldn’t realise that I am slowly dying. I have cystic fibrosis (CF), a life-threatening, chronic genetic condition that causes passages in the lungs and digestive system to become blocked with thick, sticky secretions, eventually leading to fatal organ damage.
It is often assumed that people who have no visible impairments cannot possibly be disabled, but like me, one in 10 people are thought to be living with hidden disabilities - that means no wheelchair, walking stick or similar mobility aids.
Invisible disabilities come in a variety of forms, including ME (Chronic Fatigue Syndrome), the often debilitating gynaecological disease endometriosis, Crohn’s disease (a condition that inflames the gut), renal failure, as well as a host of mental illnesses such as anxiety and bi-polar disorder to name just a few.
Daily impact
These disorders of the body and mind vary in severity and can come with a host of symptoms, including, but not limited to chronic pain, fatigue, mobility issues and weakness. Despite the huge impact these illnesses place onto the daily lives of sufferers, they are not always visible to onlookers.
Take me, for instance. I have constant pain, physical disability, endure rigorous daily four-hour treatments, take countless pills and am regularly admitted to hospital. Besides CF, I suffer from chronic pancreatitis, which leaves me in agonising pain, unable to eat for days. I also have osteoporosis that’s led to weakness in my joints.
My disabilities may be invisible, but it hasn’t stopped them from taking over my body, slowly damaging my organs, impairing my mobility and reducing my life expectancy. And still, people often refuse to believe that I am disabled.
I was just six when I was diagnosed with CF and have learned to live with it. But, using disabled services and facing people who didn’t, and still fail to, understand the concept of invisible disabilities has left me feeling ashamed, embarrassed and anxious.
Dealing with confrontations
More times than I want to remember, strangers have told me I ‘shouldn’t’ be using disabled toilets or priority seating because ‘I am not disabled’. They decide there is nothing wrong with me based solely on my outward appearance and go on to freely verbally abuse me.
But who are they to decide they are fit to police disabled spaces, or take one look at me and assess my medical history? Being treated like this in public is very intimidating and it’s why until last year, I was too scared to speak out and defend myself.
My silence started in my teens when I felt guilty for being ill and my lack of outward, physical symptoms. When I had to spend days resting in bed unable to study or maintain a social life, people assumed I was being ‘lazy’.
They struggled to empathise as they were unable to comprehend how ill I was. If they saw me smiling, I was called a liar. I constantly felt the need to explain myself just to receive a basic level of respect and human decency.
Micro-aggressions
And here comes the irony. When I did push myself through the agonising pain, those same people were the first to call me ‘brave’ or ‘inspiring’. But they didn't realise that by saying this they were ‘othering’ me. This is a micro-aggression and a form of discrimination in itself.
With all this being said, I am acutely aware of the privilege having a disability that is invisible grants me. It gives me control over how much of my illness I choose to share with others and allows me to avoid certain kinds of prejudice by not disclosing my cystic fibrosis.
The legal protections in place under the Equality Act 2010 means having a disability shouldn’t change the way others treat or view you, but sadly, it often does. This could manifest as outright discrimination, difficulty finding employment (people with disabilities are 28 per cent less likely to be in employment), earning less than your peers, being denied reasonable adjustments at work, or it could be buried in those subtle micro-aggressions I mentioned earlier.
Speaking up
Now, I won’t stay silent any more. I choose to be open about my health in all areas of my life in order to help raise awareness that not all disabilities are visible. Being open with the people I surround myself with enables me to manage my health, work hard and maintain a social life whilst feeling safe and respected.
Greater global efforts need to be made to educate people on the very different types of disability that exist. Education is the key to making society more welcoming, understand and the world more accessible to people with disabilities.
So, the next time your friend stays in in bed rather than going on that night out or you see someone who looks ‘healthy’ using disabled services or asking for a seat on the bus, remember there may well be more to their story than meets the eye.
Isabelle Jani-Friend is freelance journalist and health writer. Follow her on Twitter or visit her website. This article was first published in Lydia Wilkins’ newsletter about diversifying the media. For more information and support, visit cysticfibrosis.org
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