There is a hashtag trending on twitter: #AncientAbledProverbs, started by @HijaDe2Madre. It is about things abled people say to the disabled, often unthinking, that can be hurtful or ignorant. These could be physical or mental, visible or invisible disabilities.
It struck a chord with me. People have said some of these same things to me. I remember someone telling me “you have what everyone wants, time”, when I was unable to work. They said it like I was on vacation. A whole cluster of emotions came up. I felt guilty that I was sick, like a burden and that I should be well. I wanted to scream “ it’s not that simple”. Instead, I probably just smiled and thanked them
This hashtag should be required reading, if not to gain any more insight than ‘What not to say’
People tell people with chronic fatigue that they are lucky to be able to sleep all day. I have been told I don’t have a real disability because it is not physical. I have a mental illness, schizoaffective disorder. A surgeon joked to someone with Ehlers-Danlos syndrome1 that they could always join the circus. That is just wrong!
If they see you were happy on social media people think you are cured, or are amazed you can do things unrelated to your disability. My mom visited and commented that I was driving and pumping gas, like that was a major accomplishment. It has nothing to do with my mental illness. I am not going to go into religious statements except that it is best to know what the person believes beforehand.
Many people who do not take medication question why we take it. Do we know we are just supporting ‘Big Pharma’? Are we not aware of side effects? Why don’t we value their opinion over someone with experience and training? Don’t I know, all I need for depression is a walk in the woods?
You would think with all these examples of, “what not to say”, that I would have a list of, “what to say”. Maybe there will be someday. But, I don’t think you can go wrong with being sincere, caring, and respecting the decisions we make. Trusting that what we tell you about our symptoms is the truth.
1 Ehlers-Danlos syndrome (EDS) is an inherited condition that affects the connective tissues in the body.