Hello Belle
I hear you loud and clear. How difficult it is to walk into work 2 hours late looking perfectly fine (the off and on nature of our disease) only to explain that you had a 'headache' - yeah right thinks the employer and you're left feeling not only exhausted from the pain you've just been through but justifiably frustrated and embarrassed at being late.
Worse still, that feeling just before a meeting or important task where you just know you are going to get hit. How do you do it? You can't just run and hide in the bathroom for 2 1/2 hours - it's a nightmare and I know exactly how tough it can be. Full time work and cluster headaches don't mix.
This is where so many people become unstuck. The psychological effects of having cluster headaches is nearly as bad as the pain itself. I experienced it today, I work shifts and arrived at work at 12:30pm an hour early ready to start at 1:30pm. There's a cafe outside work and just as I sat down I felt that sinking feeling where you know you've got 5 minutes to go of sanity before the beast rears its ugly head. I had about 10 colleagues at my table and the conversation went like this:
'Alex, you look terrible and you're very quiet, what's wrong'
'Cluster Headache' * stares off into oblivion
'I saw today tonight last night, did you see it? A cure for migraines!!!'
'Not migraines, much worse, cluster headaches'
'Oh.... I have 2 Panadol, would you like them?'
'I've just taken serious medication, I'll be ok soon, just need to chill for a bit'
'Yeah your eyes look like you're all drugged up, did you have a big night?'
'No, cluster headache'
'Oh.... What are they like? I had a 5 day migraine once'
'I don't mean to be rude, but I'm in a shit load of pain, just need to chill'
Everyone starts talking again, another few people arrive.
'Hi Alex, you look sick - what's wrong?'
'Cluster headache'
'Oh, you should go home'
'By the time I get home I'll be fine'
'There should be a bed or a sick bay'
'(No response / KIP8)'
Another few people arrive, too much pain to get up and move.
'Alex, do you have the flu? You're face is red and you can't stop blowing your nose'
'Cluster headache'
'Oh, what are they?'
I have my iPad with me, bring up the Wikipedia entry for cluster headache, pass it around the table.
'Oh.... Shit, worse than childbirth - you should go home'
'Keep reading, 30 minutes I'll be fine'
'Oh ok, I'll see you upstairs'
Sure enough, the headache goes just in time to start work. A few people make nice comments. One guy texts me and says he hopes I feel better.
2 hours into work I'm called back into the office. On the walk all that's going through my mind is that somebody told a manager I looked really sick, out of it or worse on drugs. I'm expecting the worse. Turns out if was something completely unrelated.
I can't help you out here I'm sorry Belle. I'm going through a period where I'm questioning my own ability to work full time, especially in a job I'm not passionate about. I'm planning on going through the next 6 months in order to clear as much debt as possible and look at returning to full time study at University.
I was speaking about this to a friend the other day about how much cluster headaches have interfered with my career. She actually gave me some brilliant advice:
'Explain that you can be the best employer ever for most of the time, but for 2 hours you need time to yourself because of a medical condition. Show your employer some information regarding headaches, explain that you'd be happy to use that time as your lunch break and that you could work extra hours if need be'.
The other option is the disability support pension - speak to Ben about that. Companies operating in Australia have a duty to cater to people with a disability, it's certainly worth bringing it up with your employer and negotiating changes of hours etc. Some people will go out of their way to help you, others will never understand - those people aren't worth working for anyway.
I believe I have a successful career ahead of me which I'm prepared to work for. I also realise that in doing so I'm going to need to be completely up front at interview time and state:
'I can be the best employee you've ever had, but I will occasionally need 2 hours where I can isolate myself because I suffer from this condition (show info)''.
Work for me is very important, but thankfully I'm not driven by money, rather causes. This enables me to surround myself with people who genuinely care about their work and I hope will be willing to take on somebody with a disability.
Realise Belle that by simply working full-time you are doing something remarkable. I'd suggest you speak to your manager before resigning. If you're episodic, explain than in a few months you'll be back to normal. If Imigran works for you try and use it if there are important meetings etc. Try and find some abortives you can use at work.
Most importantly, let people around you know what you're going through. I was surprised at the response I got by showing one Wikipedia article on my iPad today. Now 20 of my work colleagues know that I'm not making it up and that the pain is just as bad as I make it out to be.
Most importantly, don't be embarrassed. You did nothing to bring on this disease and were dealt a shit deck of cards. I have had to change my career goals because of my disease, but in doing so I've found an area of work which I believe will be much more rewarding.
Good luck!
