but, you don’t look sick! the stigma behind invisible illness
Imagine being told you looked too beautiful to be in pain.
Unless you’re in a wheelchair or spluttering into a tissue, people don’t often tend to recognise any other type of pain. This can become frustrating for anyone who suffers from disorders like chronic fatigue, multiple sclerosis, anaemia, perthe’s disease, diabetes, depression and so on.
I’ve received many snide remarks about being ill in the past. From ‘You’d be able to tolerate pain better, because you deal with it all the time’ to ‘Not all of us can stay in bed past 9am’ to my personal favourite, ‘Oh, but you look fine.’
Does society recognise invisible illness? Do we give enough credence to people who aren’t noticeably sick?
In an article entitled What do you do? Explaining About Your Invisible Illness and Career or Lack of It (Or Do You Need to?), author Andrea Runyan argues society is misguided about invisible illness because of the assumptions that ‘only the brain can influence the body.’ Runyan states that people who do not live with medical conditions can only understand at face value, perhaps having trouble believing how someone can ‘be physically able to get dressed and leave the house on one occasion but not be able to do productive work in a regular job.’
Runyan strongly affirms that if you are ill, it’s important to explain to a person the challenges you face in life, while still maintaining a degree of discretion. The author believes that often people try to over explain or assert their conditions leading down an irreversible path of disbelief or even more prying questions. More importantly, Runyan says ‘don’t assume that people will understand how certain symptoms are much worse than they sound’ and furthermore, how they affect you.
According to ‘The Invisible Disabilities Advocate’ more than 125 million Americans suffer from a chronic condition, ‘and for more than 40 million, their illnesses limit daily activities, but only 7 million use a cane, walker, or wheelchair, making their disabilities visible.’ How must this affect the way they are perceived? Jennifer Sisk, author of What You Can’t See Does Hurt Her supports the notion that invisible illness does not always receive compassion or support, as do more conventional, visible conditions. Sisk also proclaims that medical disorders which remain ‘controversial’ in general society may not receive any support at all.
It is a sad day for society when we do not recognise suffering as a worthwhile cause for compassion. We seem perfectly capable to label a person and deem them as wealthy or poor, thin or fat and yet something as important as a genetic disorder or a respiratory condition, we have trouble acknowledging because it is not accompanied by a walking aid or a severe rash. However, as each individual is capable of evolution and with the noticeably growing field of ‘Invisible Illness’ Support and Awareness groups, it is obvious that each of us are able to show compassion and empathy in large groups.
For those who are simple voyeurs, it is not about trying to decipher your acquaintance/friend/partner’s ailment, but rather about making the conscious effort to listen to them with humility and understanding. Not to judge, criticise, pity or dismiss.
Just to try and understand.
By Sophia Anna