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Performance Anxiety: The Terror of Job Hunting When You Live With MS

Posted Nov 28 2012 8:32am

I’m not sure what I fear more – not getting a job or getting one.

First, there is the fact that I haven’t held a regular J-O-B since the year 2000. I’m not the 9 to 5 type. I’m self-motivated, creative, entrepreneurial and oh – I detest authority everywhere but the bedroom.

But here I am, 36, broke, single, a mama, and needing to get financially stable in a big way. So I’ve been applying for jobs. 8 to 6. 9 to 5. M-F. And as discouraging as it is to receive so little response to so many applications, so many cover letters custom written and sent off into seeming oblivion, it is even more horrifying to imagine what will happen if I actually land one of these positions.

Employers believe a person should be able to work consistently and productively from 9 a.m. until 5 p.m. Multiple sclerosis, however, does not always agree with these findings. MS has a mind of its own that is quite often in direct conflict with this work schedule.

When I moved to Austin in November of 2010 I did so with the cockiness and carelessness of someone who had been relatively healthy for a few years and whose memory (for the darker days of the past) is notoriously awful. What happened when I arrived didn’t even cross my mind as a possibility. And yet, shortly after my feet hit the ground in good ol’ Texas I was sidelined with the most massive MS attack I’d ever had.

A tonic spasm crippled me every 20-30 seconds for several weeks. I was bedridden and terrified. But after the initial attack subsided, I continued to suffer smaller attacks during the next tumultuous year, which was fraught with a barely-holding-on long-distance relationship, a mother who was dying of cancer, and various viruses and bacteria brought home from school by my daughter.

I had fatigue. Burning legs. Optic neuritis. Cognitive issues. All around ickiness most of the time. If I had had a job, I would’ve lost it. I wasn’t capable of working for a full year.

The experience of not being able to function normally in the world still feels fresh. I could not count on my body and I could not count on my mind. Both had failed me in various ways.

So now, as I search for a job, though I’ve been feeling great the last six months, every time I check in with my body about my ability to get through a workday, I feel terror. When I go deeper into this terror, trying to feel the shape and scope and source of it, I find myself recalling my first MS attack of vertigo. The feeling of no ground beneath my feet. Everything spinning. Nothing to hold on to but the dense conflict between being expected to perform and being unable to. Being criticized, pressured, not understood.

But most poignantly and painfully, there is the awful sensation of not being able to adequately communicate the sensations of my experience into words. Not being able to make someone understand what it’s like, which can make one feel alienated and alone – a common thread of life with MS and many other chronic illnesses.

I think the universe knows I don’t want any of these jobs. I hope the universe knows I am meant for other things, like writing. And like helping people with chronic illness make sense of their experience and feel inspired and empowered by their circumstances, rather than defeated by them. When I think of doing this, instead of feeling the terror of limitation, I feel the power of possibility, a surge of joy and purpose. I feel alive and healthy and energetic and capable of anything, which is how I know it’s what I’m meant for.

Has your illness interfered with your job performance? Leave a comment and share your story.

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