Radio Netherlands Worldwide
by Claire Gorman
26-09-2008
It’s one thing feeling tired. It’s quite another thing to have a disorder which means that all of a sudden, no matter where you are or what you’re doing, you must sleep.
Narcolepsy is a neurological condition where the brain can’t regulate a stable sleep-wake cycle. This means that narcoleptics often fall asleep at inappropriate times with tremendous social consequences for people just like 64-year-old Ruth Summers.
“Usually I can’t make it through a day without taking a least one nap. And I try to time the nap when I’m not seeing a client or I’m not in a meeting. If I have to go to a meeting and I’m sleepy, a lot of times I will fall asleep in that meeting or I will fight to stay awake and I feel like I’m being tortured to stay awake. That makes it really difficult.”
As Ruth explains, narcoleptics experience the need to sleep in a different way from other people.
“It’s overwhelming. It’s an overwhelming need to go to sleep. A narcoleptic is like someone who hasn’t slept for 24 hours. I’m like that all the time. I almost don’t know it’s like to feel refreshed except that sometimes when I’ve had a nap, right after the nap I’ll feel refreshed for an hour or two.”
Job situation
Narcolepsy has really affected both Ruth’s relationships and her career.
“It’s difficult to find a job and until recently – I’m 64 years old now [and] I’ve been working since I was 21 years old – it’s been a real struggle to find jobs. And I only apply for jobs that look like they have flexible hours.”
Ruth, who also has sleep apnoea, sleeps badly at night and finds it hard to get up in the morning. Fortunately she now works at a residential facility which is open 24 hours. This means it doesn’t matter if she goes into work later in the day. However, even her current employer is not fully aware of how much the disorder affects her life.
“I’ve kept it a secret for many, many years. It’s only recently, may be the last two jobs, where I’ve told my employer up front. And before the Americans with Disabilities Act was passed [in 1990] I was really afraid. I was afraid I would lost my job or I wouldn’t get the job to start with.”
Scapegoat
Even so, Ruth does not discuss the fact that she needs to have regular daytime sleeps with her employer.
“I have an office and I can close the door. I really haven’t discussed the fact that I take naps. As long as I get my work done. I think my co-workers are more likely to be a little judgmental. I try to tell everyone that I have two sleep disorders so they know and I remind them so they don’t think I’m just sleepy or disinterested.
“Other jobs I’ve been labeled, I know, as lazy and other co-workers at times have targeted me. It’s easier when someone has a disability to target them, scapegoat them. They’re more vulnerable because they don’t look like they are as alert or as with it as other people.”
Although Ruth tries to look at her disability objectively, sometimes she still struggles.
“I have a lot of shame about it. It feels horrible. I’ve dealt with the shame for a long time. I internalized. I thought I was lazy. Even now sometimes when I get sleepy I have to tell myself ‘I’m not lazy, I’m just sleepy.’”
