Invisible disability: we need to talk

Invisible disabilities include a whole range of neurodiverse conditions, as well as chronic conditions like diabetes and heart disease. Each one of these is experienced in a different way, with huge variance and the person who experiences them relates differently to their symptoms, conditions or disabilit

Any disability brings with it a whole raft of challenges, beyond the condition or disability itself. For instance, there’s a mental load associated with constantly assessing: 

• ‘Who do I need to tell?’ 

• ‘Will they think I want sympathy?’ 

• ‘Will they think I want special treatment?’ 

• ‘Will they treat me differently?’ 

• ‘Will they panic?’ 

• ‘Who here knows about my condition in case I need medical support?’ 

   

– and the list goes on. 

In my mid twenties, I was diagnosed with Epilepsy. At the outset, the seizures were fairly frequent. I had to give up my driving license and went through a variety of treatment trials working towards stabilising my condition. Some of the drugs brought about alarming side effects. Some worked, others didn’t. It took over a decade to stabilize to the point of being able to drive again. 

In those early years, yes the condition was disabling, but as much by people’s assumptions about it as by the seizures themselves. I am lucky of course and many, many people with Epilepsy have a very different experience. But assuming there’s a risk that I may fall down and injure myself, or that I can’t take part in something, or worse still, that I can’t take on responsibility or a role, is in other people’s heads, not mine.

In a previous job, I discovered that my manager wasn’t giving me any taxing work to do because she worried that the stress may trigger seizures. She was trying to be kind, but stress is not a factor in my condition, and she didn’t ask. When I changed companies after that, I gave serious thought to who I did and didn’t tell. This is a luxury that not everybody has and it really highlighted for me the one big thing that everyone can do to support those around them who may have a disability - whether it’s permanent, temporary or situational: 

Just ask - and listen, really listen. Having experienced it, I would say that assumption is another word for bias. You may believe you are protecting someone, or doing the right thing. But if you haven't really listened - to their personal experience, preferences, treatment, needs - then you are just exercising your assumptions. 

I don’t need taking care of, I don’t need sympathy. I often choose not to tell people, because it’s less hassle. For folks with disabilities - visible or invisible - who don’t have the luxury of keeping them private, my one piece of advice would be to never assume, just ask.