After the Honeymoon: Chronic Illness in the Workplace

October is National Disability Employment Awareness Month (NDEAM). Therefore, it seemed like a good time to tell parts of my story relating to being “disabled” with chronic invisible illnesses as a young adult in the workforce. A lot of the patients I hear from faced the challenges of developing these illnesses in their 40’s (give or take) and having to leave the workforce; there is much for me to learn from their experiences, but I need to apply it in a different way as I entered and try to make my place in the workforce. At 45, it’s hard enough to give up your job – at 15 (age at diagnosis) it’s really not an option. Hopefully what these patients went through can help me in this challenge.

In my last post, “Once Upon a Time: A Tale of Disclosure”, I discussed my decision to disclose my illnesses to my firm before I was hired full-time. Now, I’d like to share how I approached my first few months (which included my first Busy Season) and when I realized I needed an accommodation. To be clear, I’m not suggesting all other chronic patients follow in my footsteps, but we can learn a lot by examining the way other people make these decisions and that’s what I hope you take away.

When the honeymoon was over…

I spent my first 6 months or so as an auditor trying the full grind to see what I could handle. By then, I realized the travel was one of my biggest problems – at least, of the problems we could do something about (as opposed to the excessive overtime that’s part of the biz – my rheumy still isn’t happy with me about that). Up until that point, my “disability” had been mostly talk; the firm knew about my medical situation since I externed (the summer before my internship) but I hadn’t needed any real accommodations. We knew I was different in theory but I had acted and been treated like anyone else, so far. In a way, this was like a couple’s first big financial decision – it can solidify their relationship or send them running for the hills and the nearest divorce attorney.

With this in mind, I wanted to come to the table asking for an accommodation to reduce my out-of-town travel with some possible solutions in hand, so I developed a list of clients in my preferred industries which were local enough to avoid an overnight stay. I think this is when I developed my concept of “making accommodation feel like collaboration”. While I never actually ended up on any of those engagements, it showed the powers that be I was only looking for them to meet me halfway. Which they did.

There are, of course, imperfect moments. I’ve dealt with some team members who could stand some serious sensitivity training (not to mention an education in health issues in general…or even just in manners). As I mentioned, the hours are an ongoing struggle. Even as I enjoy the support of the rest of my coworkers allowing me to advance on par with my most ambitious peers, I also face the other edge of the sword with dramatically increasing responsibility (read: stress, anxiety, and reduced tolerance for foggy brain days). But I couldn’t ask for much more than an environment in which I can safely and comfortably discuss my medical challenges even while managing local and national projects which just happen to be part of my dream.

But not everyone has found their Prince Charming. I know I’m one of the lucky ones. I know some day my luck may change. I know some people are ready to throttle me for telling this tale. Knowing how many of my “spoonie” peers are in the exact opposite (and often sinking) boat makes this whole thing a little bittersweet. I’m not oblivious to the horrific injustices so many of you go through for employment – if you even can work at all.

I can only explain my decisions. I wanted you to know, especially during National Disability Employment Awareness Month, WHY I disclosed to KPMG. It was a damn big risk- I was already taking an extra year and most of my student loans to graduate college, if I had blackballed myself among the top employers for graduates I would be in a BAD place. I didn’t make the same decision to disclose to my employer during college (when I worked part-time for a small construction company). And I don’t suggest that everyone else should follow my lead.

But eventually someone has to take the risk. It’s not just for myself, it’s also for everyone else who needs their job. If we all hug our cloaks of invisibility tight for fear of what society’s ignorance will do to us, we only make it worse. Those of us blessed enough to have a chance to cast off the cloak, I believe, have the responsibility to do so, and fight ignorance with information. And above all, I want you to know these situations and employers do exist. KPMG is just one of the “good companies”, but since job seekers don’t have to disclose, it’s hard for these companies to reach us.

Look for more posts this month about my experiences as an employed person with a disability. Have your own experiences, thoughts, or ideas to share? Leave me a comment, or better, write a post and comment with the link! Mine is only one perspective, we need many to get anywhere.