There is this impression that a lot of people do not know about Fibromyalgia or understand it in the general public. I wrote an article in 2012 about How Much Awareness is Out There that suggested there was more than we think. I am going to post the reprint on that. I assume there is even more awareness now via all the 800 drug company commercials.
May 12, 2012: How much awareness is out there?
Fibromyalgia is a syndrome primarily characterized by widespread chronic muscular pain, fatigue and insomnia. It is a difficult to diagnose syndrome and equally difficult to understand. People who suffer from the condition often fear they are being treated as hypochondriacs or are perceived as chronic complainers and lazy. They often fear to disclose they have the condition to their employer and co-workers because they might face discrimination or a hostile work environment. A decade ago many people would be hard-pressed to say they had even heard of the condition. How far has FM awareness come today?
American Chronic Pain Association survey
According to a survey done by the American Chronic Pain Association in March 2012 92% of the general population in America has heard of Fibromyalgia. This is a substantial increase in FM awareness in the general population, however, the survey also suggests people do not understand the difficulties involved with everyday tasks. For example, people were asked to indicate activities they believed people with FM would have difficulties with and people with FM answered the same survey. There was little discrepancy in the category of ‘do yard work or clean the house’ but there was a significant discrepancy in categories like ‘watch a movie’ or ‘drive a car’. The reasoning for this no doubt that pain must be caused by doing activities but with cases like FM it can be just as painful to be still or in one position for too long.
Do people know who FM afflicts?
When it comes to who can get FM the same survey suggests people are not too clear on the idea. 44% said they were not sure who was impacted by FM and one-third said older women. When looking at FM prevalence the majority of FM sufferers are indeed women, however, men suffer from the syndrome as well. Diagnosis can come at a young age but there is an increase in the prevalence of the condition in aging populations.
How are the FM disabled perceived?
What is most interesting about the ACPA survey is how the general population perceives those who suffer with FM versus how they perceive themselves.
The study states that people with FM believe society sees them as ‘complainers’, ‘weak’ and ‘lazy’.
Whereas the results indicate the general population sees them as ‘courageous’ and ‘strong’.
There are plenty of reasons for FM sufferers to have this impression. People who have had FM for over a decade have been exposed to doctors who have denied the existence of the condition or refused to treat them. They have been told they were ‘stressed’ or it was ‘all in their heads’. This leads, unfortunately, an unwillingness to disclose details to health professionals for fear they will be labeled as hypochondriacs. Others fear they appear as chronic complainers because their health concerns come up in everyday life so often. They fear co-workers might believe they are using their health as a reason to ‘get out of work’ or as ‘an excuse’. They may have dealt with hostile work environments or family members who have had difficulties coping with having a loved one with the illness. They also tend to believe society, employers, and family all have expectations of them, of anyone, that they are not fully capable of living up to anymore and the guilt of that is a heavy emotional burden. All of this leads to the general impression that the average person would have a negative view of their condition. Whereas the general population sees people coping with a chronic pain condition, perhaps suffering financial and emotional burdens because of it, and yet still able to get through daily life and function.
Pain may be a private experience and while it can be doubted by the outside observer we, as human beings, have the capacity to empathize and as such we can grasp the struggle someone is going through without having to feel the pain ourselves. It takes a great deal of strength and courage to cope with a complex, chronic pain syndrome like FM and clearly people are able to empathize with that struggle. It is profoundly encouraging to see that result to FM awareness even if only to bring to light to FM sufferers that all people do not perceive them in a negative fashion. Clearly, there is more awareness of fibromyalgia as a chronic pain condition even if the specifics of how that pain affects daily living are not too clear. However, FM awareness as a chronic pain condition is different than FM awareness as a syndrome. Very few people understand the complexity of the syndrome as a whole or the fact that there is a great deal more involved than just pain. Awareness campaigns that bring to light all aspects of the incurable syndrome not only help with public perception, which decreases decimation and bias, but can help push for research and eventually a cure to this debilitating condition.