Living and Working with Invisible Disabilities

By Elsa Gavrill - McMahon, Executive Assistant to Chief People & Communications Officer at Finastra

“You look great” is something that I hear often, but I rarely know how to respond to anymore -not out of shyness or because I don’t like compliments, but because quite often, I might not feel great at all. In these moments, I wonder how I should reply – just thank the person? Tell them that I don’t feel well right now and I might need some time alone to regroup? Is it the time and the place to start a quite elaborate conversation on my rare medical condition that nobody has heard of?

This is the reality of living with a condition that causes invisible physical disabilities. A year and a half ago, I was diagnosed with myasthenia gravis, a rare autoimmune illness that causes muscle weakness. Autoimmune illnesses occur when our immune system gets confused and starts producing antibodies that kill not viruses, bugs or cancer cells but the healthy cells of the body. In my case, my body is attacking the connection between my nerves and my muscles, so my muscles stop working. This may not sound so terrible until one finds out that chewing involves 52 different muscles. It is quite often that I start eating, only to realise after a few bites that my jaw refuses to open. I also experience double vision, which impairs my ability to see and read (a big problem if your working life involves being in front of a laptop all day long) and stops me from driving or exercising as I can get sudden intense fatigue.

Living with a chronic illness is hard at times. Working with one can be even harder, especially if one has always been and still looks healthy. Quite often, people with autoimmune illnesses are labeled as lazy, lacking motivation or poor performers, so speaking to our managers and explaining our condition and its effects is essential. I have been very lucky at my job as everyone at Finastra, and especially my manager has been very understanding and accommodating, allowing me to take breaks when I need to rest, as well as time off for medical appointments.

The support that I receive daily from my organization has given me the courage to speak publicly about the challenges of living with disabilities despite the stigma that still exists. People with disabilities cannot only continue working, but they can have meaningful and successful careers, as long as the necessary adjustments to their working conditions are made.

My top 5 tips for any organization that wants to support their employees with disabilities would be:

1. Create a safe environment where difference and otherness are celebrated. It takes huge vulnerability and courage to admit to a disability, so make sure that your employees feel confident they will be heard if they disclose to you.

2. Take your cues from your employees: every illness is different, and everyone’s body is different. Even if you know people with the same condition, refrain from offering solutions. Instead, listen to your employees and make the adjustments they need to perform their best.

3. Illnesses have their ups and downs: have conversations periodically with your employees and adjust their working conditions accordingly. 

4. People with disabilities don’t expect you to know everything about their condition and needs, so don’t avoid breaching the topic out of fear of getting it wrong or offending them. You can start the conversation by being honest, along these lines: “I don’t know what it feels like to have this condition, but I would like to listen to you, and see how we can make work comfortable for you”. 

5. Bring accessibility and inclusion into everything you do: turn on the captions in meetings, use the accessibility checker for any useful tips, plan team-building events around everyone’s abilities and not just the fittest.