Off to Work

I'm really excited to be participating in the WEGO Health Health Activist Writer's Month Challenge.  I'm hoping that the challenge factor will motivate me to write more often (every day this month, in fact!), and that that will develop into a habit of writing regularly after the month is over.  More importantly, I'm hoping that by sharing my experiences, thoughts, and insights about living with chronic and invisible illnesses, I'll be able to bring comfort to someone struggling with the same issues.

*Note - I'll be including this introductory paragraph at the beginning of every post, so that anyone who's checking in will have that background info.  If you come back another day (and I hope you do), you can skip this part!

Today's assignment: Off to Work.  What advice would you give to those on the job search? How do you juggle your job and a chronic illness? Any tips for the interview?

When I saw this topic, I had to laugh.  It seemed to be the perfect topic for me to write about, since it’s exactly what I’m dealing with right now.  I’m in the middle (hopefully closer to the end) of the job search process, and it’s been intense.  I’ve learned a lot – from my mistakes, my interactions, and my introspection.
Even before our superpower post, I’ve always tried to be a bit of a superwoman.  It wasn’t intentional (and it certainly wasn’t ego); I have just always felt that there was more that I could do.  My jobs have always been in the helping field, and I’ve volunteered for a variety of organizations since I was a child.  At one point, I remember someone yelling at me, saying “you can’t save the world.”  My response was that it wouldn’t stop me from trying!

I say this not to pat myself on the back, but to point out that I’ve often done this to my own detriment.  At one point (about ten years ago), I was working a full time job and a part time job, taking classes, and volunteering – hardly leaving room to take care of myself.  It’s ironic, especially since a few of the jobs I’ve had included literally preaching about the importance of taking care of oneself.  When I got sick, it became that much harder to find that work-life balance, and that much more damaging when I didn’t.  Ultimately, what I ended up doing was … well … everything I possibly could for my job, and then suffering the consequences physically whenever there was down time at work.

All of that changed a few months ago when my organization restructured, leaving me (and a lot of other really great staff) without a job.  While I was naturally upset at the time, I have since come to believe (or rationalized, at least) that this was the universe’s way of forcing me to step back, rest, and reevaluate my priorities.  Whether stemming from the added stress of being unemployed or the perceived “down time” that my body recognized, my physical symptoms have gotten much worse over the past few months, and new ones have developed.  I have had to split my time between the job search and the medical visits, each making the other more difficult.

What this made me realize is that I could not just look for whatever job I wanted.  While I will always give my all to anything I do, I can no longer take on a responsibility that will be detrimental to my health.  I’ve got to take my illnesses into account, and find a job that meets not only my need to be altruistic, but my physical needs, as well.   

Searching for a job can be difficult for anyone … but for someone with a chronic illness, there are many things to consider above and beyond whether it is a good company or the position matches your skill set.  Other things to keep in mind include


  • Location.  As time passes and we get more anxious about not having a job, it is easy to become desperate and expand the search to a larger geographic area.  If the weather isn’t that bad and we can beat the traffic, we tell ourselves, the commute won’t be too bad.  What we can’t overlook, though, is how often the weather is that bad and we can’t beat the traffic.  Adding an hour to a commute may just be an inconvenience for a healthy person, but for someone who suffers from chronic fatigue, getting up that much earlier and getting home that much later can actually lead to a flare, an increase in symptoms.
  • Flexibility.  The most important thing to remember about a chronic illness (not that we could really forget) is that it is chronic.  Even if we have a period of remission, it is something that we will always have, and always have to deal with.  We have frequent medical appointments that often can only be scheduled during normal business hours.  We have days when our minds are fully functional, but our bodies are not.  That doesn’t mean that we cannot be effective; it just means that a 9-5 office job may not be the best fit.  If we have the flexibility to shift our hours around a doctor’s appointment or work from home on occasion, we can be even more productive in our own time.
  • Physical Demands.   Most job postings indicate whether “heavy lifting” is required, but for those of us with chronic illnesses, it’s not that simple.  Sitting in one position for too long, standing for too long, bending over too much, writing too much … depending on the day (or the hour), any of these things can be challenging.  A job that includes a wide variety of duties enables us to work on whichever task is most comfortable (or at times, least uncomfortable) in the moment, and shift positions to work on something else when necessary.
Another important consideration – both for the interview and for the job itself – is who and how much to tell about the illness.  This is something I have struggled with for years, and I believe I may have suffered as a result.  Of course, legally, no employer can penalize anyone for having an illness or disability.  Still, it can cloud their judgment and affect their actions in many ways.

I have always considered myself an open book – always honest, true to myself and true to others.  So it never even occurred to me to hide my illnesses … especially when I was going through the living hell of trying to find out what was wrong with me.  It’s not that I was jumping onstage to broadcast what I was dealing with, but I didn't see anything wrong with letting my boss know what was going on every step of the way.  After all, she cared about me and was on my side … wasn’t she?

I say “she,” but I’ve been in this situation a few times, with a few different supervisors.  It has led to a fuzzy area, where nothing is certain, but perception is everything.  If a coworker asked to work from home to wait for the cable guy, it was one of the perks of the job.  If I asked for the same thing because I was in pain, my illness was affecting my work (no it wasn’t).  If I didn't get a promotion that I knew I was qualified for, I wondered if it was because of my health situation.  When the recent reorganization left me out, I had to wonder if it had anything to do with my illness.  I was discouraged from going to HR for protected leave, but unfairly judged for staying home without it.  The grey area (and subsequent problems) occurred when my employers knew about but did not understand my illness.  I may never know the truth about those situations, but I will do all I can to avoid repeating them at my next job.  

What I've learned from this is that though a supervisor may truly care, she is not a friend.  The best advice I have found was to tell as little as necessary to justify any accommodations needed.  If we want to be judged for our work rather than our illness, we cannot make the suffering a part of the everyday conversation.   When it is necessary to mention the illness, we must do so matter-of-factly, not emotionally: “as per the previously agreed-upon arrangement, I will be shifting my schedule by 2 hours on Tuesday,” rather than “I’ve been so tired and dizzy and in hurting so much so I’m going back to the doctor in the morning, and I hope she can help because I just can’t take this anymore.”  Even when the symptoms overwhelm us, it is better to say “I’m not doing well today so I’m going to go home” rather than giving the laundry list of symptoms.  We must be able to show our bosses that though we do live with a chronic illness, we are strong, intelligent, competent workers.  That said, we must be honest with ourselves, and not take on a job that we would not be able to perform.


**If you like what you read, tell a friend.  In fact, tell me, too - post a comment below!  If you don't ... well ... I'm all for honesty, but ... please be gentle!