Is Narcolepsy “Socially Accpetable”?

The worst part isn’t not knowing if I do or don’t have a rare sleeping disorder which is known as Narcolepsy. The worst part about all of this, is that it’s not socially acceptable to have this condition. I’m going to put you in the picture as to what it’s like to live with such symptoms and highlight a recent spat with a national pub chain.

If you’re in a wheelchair you wouldn’t get asked to leave. Anywhere. You wouldn’t get dragged into meetings with HR with the view that you have to leave the company you work so hard for, just because you now have a wheelchair. You wouldn’t expect to be turfed out of pubs, cafes and art galleries, you wouldn’t be expected to be approached by police officers in train stations and asked to leave the station, picked up at music festivals and taken to first aid. You just wouldn’t expect to be rejected and misunderstood in such a way and you wouldn’t expect to be incapable of communicating what you health condition is. But this is what happens to Narcoleptics. Not just me and I’ve seen it happen to people with Tourrettes too, so I’m not here to rant about how it’s unfair on me only.

“The rejection is so hard to deal with and this frustration has to come out in a positive way, to let people know how frustrating it is to be told you’re not allowed to be asleep right now”

Narcolepsy Makes Me Look Drunk
It’s a perception thing and thus far I’ve not been able to convince anyone other than my close friends and family that what I have is a medical condition that is out of my control and that I’m not under the influence of drugs or drink and that Narcolepsy is not a problem, unless people make it a problem and many have.

I was enjoying a nice meal and a cola in a normal pub chain a few weeks ago, when I suddenly felt tired and had a sleep attack. Part of a sleep attack is that I’m unable to respond and when I do I appear to be intoxicated. There may be slight cataplexy happening which can slur your speech and dull your senses. My eyes will be going ten to the dozen and I’m effectivly in sleep mode.

“Which is fine until you fall asleep in a pub (Or an art gallery that serves alcohol)”

Ejection Is Wetherspoons Policy
Yes this doesn’t just happen in pubs. In fact anywhere that serves alcohol usually have some form of policy that states you’re as a result not allowed to sleep (or pass out) on the premisis. I’ve so far had much more hassle from Wetherspoons and Yate’s pubs than any other, but this has happened to me at the Midlands Arts Centre too. People get so embarrassed that they don’t want me to be around anymore. So back to my meal and cola, my nice quiet peaceful little corner of the world, violently shaken by a member of staff who had seen me asleep and was about to eject me from the premisis.

“People get so embarrassed that they don’t want me to be around anymore, they litterally want me gone, like I’ve commited some hiddeous crime by falling asleep in public view.”

Unable to respond clearly I show a letter I have from my doctor, so the lady threatens to call an ambulance. I asked her not to waste such a valuable resource because what was happening wasn’t an emergency, explaining that it would pass within 10 minutes if she left me alone. But she wouldn’t. She wanted me out of sight, a pattern repeated by many people who don’t understand or accept Narcolepsy.

I asked to use a cubical in the toilet (you know because it’s so shameful and reflects badly on the person who is offended by my “socially unaccptable behaviour” You can’t do this yada yada). I was told I couldn’t but I protested and she eventually let me stay on the premisis, if I used a toilet cubicle to sleep in. All the cubilces were engaged so I actually collapsed on the floor near the sinks. Unfortunatly I can’t comment on why I lost my job, but it’s along these lines.

If I had of been left alone, my attack would have passed and we would have been back to normal, but the intervention made the situation worse, it caused me great upset, it caused a scene when otherwise there wouldn’t have been one and the company lost my loyalty.

What To Do In Future?
Well i spoke to the manager on site, who seemed dismissive. I wrote to head office and have recieved a response about it being about health and saftey, which unfortunatly I can’t comment on the trouble I had at work but it’s along these lines.

I’ve thought about and will probably do this; Approaching a member of staff when I enter a new premisis about my condition and what happens and if it happens while I’m on site today, to not worry. But to do this I need such backing from my consultant, doctors and bassically society in general that sleep disorders are – real, they exist and that I’m not using it as an excuse to be treated differently. I have a medical condition, it is what it is, surely?

“The man on the phone suggested that I could have been having a stroke and yes that’s very true, however this lady didn’t want to see if I was ok, she wanted me out of her sight, she wanted me off the premisis.”

In Conclusion
My incident is ongoing with Wetherspoons and i’m working with them in a positive way to ensure that staff are trained to firstly not eject someone who is sleeping. The man on the phone suggested that I could have been having a stroke and yes that’s very true, however this lady didn’t want to see if I was ok, she wanted me out of her sight, she wanted me off the premisis.

And do you know what? My actual sleep attack lasted for about 2 minutes, 2 minutes in which my day was ruined and I’ve had to spend 3 hours so far chasing it up and communicating about it. And that’s just one pub, in a typical day I might need to visit Tesco, an art gallery, a public park, indeed a public place of food and drink, a train station, I could easily miss my stop on a bus or a train. I really need someone with me, however DLA doesn’t seem to think my condition has a disruptive part in my life and that I shouldn’t need someone with me to defend me because well …… nobody believes I have Narcolepsy. I’m not even sure the diagnosis will convince people of this.

Spinal Tap Results on Friday
I get the results of the test for orexin on Friday which is the final and perhaps the most complex test for Narcolepsy and is ONLY done if there is a strong chance somebody has Narcolepsy. I can see why. I was left on a bed for 3 hours in March while the lovely lady got training on the phone on how to drain the fluid from my spinal cord. My medication has progressed from Speed and I’m now being treated with Cocaine. The next level up is full on Amphetamines.

“I’m nervous for the results of the Orexin test, a negative result would leave us in limbo, but I do have a provisional diagnosis of Narcolepsy dated 21st December 2010″