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
Thank you so much for this article. I would love to have it linked at our Invisible Illness Awareness Week site (submit here http://invisibleillnessweek.com/submit-article/your-blogs-for-the-cause/) . And for anyone else who can relate to this article, Invisible Illness Awarness wEek 2012 is Sept 10-16, 2012. We will be having a free virtual conference with many speakers/seminars and we hope you will join us.
I think there’s too much emphasis on suffering in silence. When I was a kid and I complained about stuff, my mother would tell me to stop complaining. Now, I’ve got gastrointestinal issues (I think I am lactose intolerant) and I really try never to talk about it.
And then again, there’s my supervisor at work who suffers from a combination of afflictions, including diabetes, Graves disease and a muscular condition, and while she does nothing to treat her body well — she eats poorly and is roughly 250 pounds — she complains to me all day long. Although her favorite thing to say is, “Well I’m in so much pain. You just don’t know because I don’t show it.” I always want to howl in laughter when she says it. She plays it up so much.
It’s a very tricky thing. I feel like nobody wants to hear someone constantly complaining, but it’s not a bad thing to let people know…
Cancer survivor and suffering from many invisible illnesses… loved my visit here, hope you’ll stop by.
Heather
Thankyou for visiting, Heather and for having the courage to speak up about your ongoing journey and blog ‘Still Surviving.’
Take care ~
Sophia Anna
Very gppd reading. I have a chronic pain condition from degenerative arthritis throughout my spine, and every joint. I cannot take NSAIDs & cannot take narcotics because #1-they’re habit forming & #2. they don’t mix well w/ my fulltime job. I get,frequent full blown migraines stemming from the pain that radiates from my neck. I’ve had a spinal fusion, trigger point shots, radiofrequency ablation, you name it-it’s been done. Meanwhile, I’ve missed time at work, both for procedures & for pain flare ups where I DO need to take the stronger narcotic meds. My co-workers have made comments b/c while I’ve been out, my daughter may have visited w/ my grandkids, or during my post-op periods, I might take leisurely walks in the park (walks were ordered by the doctor). It hurts to know that one must be made to feel that they always have to defend their actions & be made to feel like a liar by people they thought were their friends.