November 13, 2010

I have been thinking a lot about work and managing my illness lately.

Last week I went to a local lupus support group. None of the women there were working full-time. One was pushed out of her high-powered job when the office found out about her illness and now she is in a lawsuit with them. Others simply couldn't handle a full-time workload overtime and somehow have managed to make things work, self-employed and able to rest during the work day when they need to. At the support groups in New York, most of the women were still relatively young (20s to 40s), very active in their work (as producers, bankers, designers, agents, etc), but do not divulge their illness in the workplace and some have even found coworkers accepting when they had to be at the hospital for days, even though they did not know for what (and they didn't ask). (I like the discretion and respect for secrecy). But, the truth is we are working in a place that thrives on the workaholics who party and network hard. And some days that catches up, and the worst scenario is fatal or at least seriously crippling.

I know there are those of us out there who simply enjoy working ourselves to exhaustion, in an exhilarating test of strength and will power. But I lose count of the days when I felt I have had to prove my worth on a team, working overnight, series of long days and late nights running on my feet, making chaos somehow coherent, weeks in a row and wake up in pain, dreading arising. You can't be the special one not pulling your weight. This compounded with the angst of staying in the closet about the pain, and no one to genuinely commiserate with. It's pretty fucking lonely.

Of course now it's easier that I've gotten to a place where I can be more open about my disability and make special requests. I still live in fear of fashion week, though, wondering if this is going to be the season I burn? Ah well ... must concentrate on the nice sort of sabbatical now and build up extra stores of vitality and HP before I re-enter the gauntlet. Oh such masochists we are.

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