Chronic illness and work

My youngest cousin is starting college this fall.  I went with her yesterday to buy a laptop.  The woman who helped us was great.  As it turned out, she had been a medical student and had to leave school.

“Oh, I applied and withdrew my applications because I got sick,” I told her.

“I got sick and had to leave because they wouldn’t accommodate me and were awful about it,” she replied. 

I nodded.  Unfortunately I hear this sort of thing a lot.  A lot.  I hear it about school occasionally, but most of the time it is about work. 

One of the biggest stressors for the chronically ill is work.  People are frequently stressed out about their companies, coworkers, and work policies.  When I lost my hearing, this guy used to walk up behind me and talk loudly, then when I would turn around, he’d say, “See!  You can hear me!”  No amount of explaining variable hearing loss would convince him I wasn’t faking.  It was humiliating and honestly has really affected the way I interact with my superiors.

I think most of us have been through this.  Flexible schedules that are flexible for others, but not for us; reviews that include involved discussions of your health; never getting promised promotions or raises; saying you don’t need to bring in notes, then penalizing you for not having them; always being the scapegoat.  The scapegoating is the worst, if you ask me.  Being  accused every day of making mistakes, not doing things we never agreed to, laziness and of being an outright liar. 

Invisible diseases mean that other people just assume you’re exaggerating your symptoms; with rare diseases, the perception of lying is worsened because we often go through many diagnoses before we get to the right one.  I have been told I had everything from CVID to an acoustic neuroma, and for a while, I believed these new names for my sickness.  I stopped wanting to tell people what my newest diagnosis was because I knew that if I told them, they would think I was a liar.  But I felt that if I didn’t tell them, then I would be one.   So I told them.

If you tell them the details, you’re oversharing and attention seeking; if you don’t, you’re secretive and distant.  It’s bad when the company doesn’t support you as a matter of policy, but I think it’s worse when your coworkers just turn on you.  Everyone stops talking when you enter the room.  Everyone goes out after work together but you are never included.  People roll their eyes when they ask why you were late and you tell them you were at the hospital again.  It is embarrassing and insulting and it makes you defensive. 

I once had someone point blank accuse me of fabricating my entire health history.  I remember telling my sister, and her response was, “How do they think you’re doing that?  You would have to be lying to everyone in your life.  Your entire life would have to be a lie.” As if anyone would want this.  As if anyone would go to this much trouble to make these things up.  And really – as if anyone could remember all of this if it wasn’t their life.

I know people who have lost their jobs because they were sick.  People are always quick to say you should sue, but even when you have a case, it is massively expensive, time consuming and stressful.  At the end of the day, no one wants to sue their company.  Most people just want to work a job and be treated with respect.  It is not that complicated.

For the people who don’t lose their jobs, the thought that they might is still never far from the mind.  Losing income and insurance is an ever present fear for the chronically ill, even those who perform well and have good relationships with their coworkers and management.  I feel guilty a lot, even though I have been reassured that I don’t have to.  I feel bad that I have to work from home so often, even though my work gets done.  It is a reaction to experiences with previous employers in which they were not honest with their communicated expectations.  I feel like no matter how good it seems, it can all come crashing down at any time.

It spills over into other areas of my life as well.  When people doubt that I am sick, even people I don’t like or don’t care about, I immediately relive that humiliation and need to defend myself.  It is frustrating because people like this are best ignored.  I don’t like bullies and at the end of the day, that’s what this is. 

I am fortunate to work in a place where I am well supported and believed.  I know others are not so fortunate.  I could advise you of your legal rights, but I think most of you know them and that’s not really the problem.  It doesn’t really matter if your company lets you work one day a week from home if the other four days, people make you feel like garbage about yourself. 

So I guess I just want to say – the emotional aspects of working while sick are as important as the physical accommodations.  It’s okay to be upset when people mistreat you.   I get it.  I support you.  And I’m sorry that this happens.  It is truly one of the most upsetting aspects of being sick – this loss of respect and dignity by many of your peers.