Too tired to work - the 'lazy label'

Image used with kind permission of RileyAV

There seems to have been much discussion in online circles recently about the negative response people receive to their bouts of excessive daytime tiredness. Sadly most of us have encountered the 'lazy label' at some point, with people implying that there's a deliberate choice and intent to do as little as possible; that we are somehow just lacking enthusiasm or inspiration to do more. It's an assumption that frustrates many people with the condition, particularly as most of us work incredibly hard to function as if we didn't have limitations as much as possible; fulfilling roles and responsibilities to the best of our abilities and often at the detriment to our own health. The feeling of guilt at not being able to contribute as much as we would like, can make the 'lazy label' all the more hurtful when coming from those who are close to us - friends, family, close work colleagues. People who we expect to be more understanding about our difficulties than they actually are. It's this lack of understanding and fear of judgement from others that leads sufferers to think twice about being openly honest about their illness, its severity and how it affects them; with many deciding to hide away in hope of not drawing attention to themselves. I adopted this approach myself for nearly 11 years. It leads to isolation and loneliness, with people struggling silently often unaware that others are doing exactly the same thing, for the same reasons. So why do people react so negatively to excessive daytime
tiredness? Perhaps if we can understand the reasons behind these reactions, we can find successful ways to change them.

Most people are aware of the cultural differences in sleep behaviour and that some cultures are more accepting of daytime napping than others. Cultural norms and sleeping etiquette appear to be increasingly entangled with employment, and manipulated to maximise social productivity. Daytime siesta's are regarded socially acceptable in countries with warmer climates, as they enable the workforce to change the hours they work in response to difficult working conditions. The idea of a siesta can not be justified in countries with a colder climate and therefore are generally regarded as unnecessary and luxurious. I suspect here lies the problem...sleeping is mainly regarded as an integral tool to improve employment and social productivity (Schwartz, 1970), encouraging a culture where deliberate minimising and sacrificing of sleep are increasingly "worn as badges of honour or pride - a sign of self-discipline" (Williams, 2005, page 3). A contributor to an online discussion group summed this theory up perfectly stating that "sleep is one of our societies biggest taboos. Sleep is a reward, quality time for yourself. Lack of energy = laziness. Sleeping too much = selfishness, a lack of respect for others. Ultimately, someone who's always tired and is sleeping too much or at the wrong times is a loser, an underachiever with a bad attitude, lacking any basic sense of responsibility." (Hartig, 2005). Those who are unable to meet the expectations society places upon employment and productivity, are automatically regarded as 'undeserving' as they haven't 'earnt' the 'right' to additional, selfish rest/sleep, and that in some way they are being disrespectful to those who are 'deserving' of this 'right'. Perhaps we need to question people's interpretation of 'deserving' and 'undeserving'. Who has a 'right' to more rest than the norm and who has a 'responsibility' to function in spite of periods of exhaustion.

So where do people with life-long, chronic illnesses stand? Which side of the deserving / undeserving line do people who are effected by uncontrollable daytime tiredness sit? I'm going to suggest that it depends upon individual interpretations and understanding of the life effects of each illness, rather than on the specific knowledge of the illness itself. Do those with MS, Parkinson's and other life-long, comparable (in terms of life effects) conditions, encounter the same negative reactions as PWN? Although I have no figures to refer to, an educated guess would say that it's unlikely. I suspect that a greater awareness of the potential life effects, maybe enough to change where upon the deserving / undeserving line people are placed. If I was to ask where a person with epilepsy should sit in regards to this line, I would expect that most people would be 'forgiving' of the excessive daytime sleepiness and limitations this condition imposes, despite not knowing the specific medical elements of the condition. The only difference between the conditions mentioned above and narcolepsy (in terms of sleep acceptance) is the lack of potential severity and life effects awareness. It may surprise people that the leading researcher in the field of narcolepsy and cataplexy, Dr Mignot has stated that "...the effects [of narcolepsy and cataplexy] are even more severe than the well-documented deleterious effects of epilepsy". Would knowing this change peoples opinions and interpretations about the condition? Would people be more 'accepting' of our limitations and more likely to place us on the side of 'the deserving'? I like to think so.

Raising awareness and changing societies view of narcolepsy is complex and complicated, because the condition itself is complex and complicated. Perhaps we should simplify our strategy and put a greater focus upon it's potential severity and consequences to everyday living, rather than on the difficult to understand medical facts. If we educate using aspects of life that people can relate to, such as the inability to drive/work, difficulties parenting/socialising/exercising/holidaying then there's the possibility that this very simple approach could help steer change in opinions. Yes...such brutal honesty makes us vulnerable to criticism, however we shouldn't feel ashamed of the limitations that have been forced upon us; but instead be proud of our achievements in spite of them. One day more people in the world will see it this way.

What if...