Working with Lupus isn’t for everyone.

I’ve always been an enthusiastic cheerleader for the “listen to your body” team. I imagine working full time has it’s struggles for any and everyone at one point or another. We all have our days.

I can’t begin to describe how tired I felt all the time when I was working part time. I slept in on my off days. I took frequent breaks during my on days.

When I got hired in a full time role, I was ecstatic and terrified beyond belief. If I could barely manage 20 hours a week, how was I going to manage 37.5 hours a week? My degree of fear led me to tell my new manager about my potential struggles. Heck, I think I even mentioned it in the interview (probably not recommended).

The first month or so was difficult. It was difficult because it was something I wasn’t at all used to. I wasn’t used to waking up early everyday, and I certainly wasn’t used to working all day.

Then something happened-I realized that I loved my job, and therefore it didn’t feel like “work”. I still have my days, but working full time in my HR job was somehow “easier” for me than my part time call centre job.

So what do I want you to know about working, either full time or part time with lupus, and why it may not be for everyone?

1. Fatigue hits everyone differently.

Lupus is called “The disease with 1000 Faces” for a reason. No two cases are alike. I definitely suffer from fatigue, but I know that it’s absolutely debilitating for others. Trying to concentrate on the task at hand while attempting to ward off fatigue is exhausting in and of itself. Hell, sometimes even getting out of bed in the morning is a victory for some.

2. Doctor’s appointments are often a lupus sufferer’s “career”.

At different points in my life, I’ve had to go to doctor’s appointments several times a week, and often more than one appointment per day. One those occasions, I always wondered if and how I would be able to work full time if I was never at work. What sucks is the fact that most of my time at these appointments is just waiting.

I spent 2 and a half hours waiting for an appointment last month. When I finally confronted the available receptionist (all the rest had already left for the day) I was told that 2 people were still ahead of me. HUH? I hadn’t even gotten into the “room after the room”. I was still in the large waiting room! No way. I did my blood work, collected my things, and left.

3. Well at night, unwell in the morning.

When I go to sleep at night, I have no idea how I’m going to feel in the morning. I often have stomach aches, joint pain, and just an overall feeling of “un-wellness”. It’s hard to feel comfortable working full time OR part time when your health is unpredictable to the point where you don’t know if you’re going to feel good in the morning.

4. “Germy” Commute.

I have a few options when it comes to getting to work:

• Take one bus, then two subway trains
• Take one bus, then two subway trains, then one more bus
• Take one bus, then two subway trains, then walk for about 6-8 minutes

I often choose option two, because it pretty much drops me off right in front of my office door.

While I’m on the bus (or train) with my gigantic headphones on, I watch people sneeze without covering their faces, cough without covering their faces, pick their noses, pick their teeth, clip their nails, hoark loogies on the ground, etc.

My point is, public transit is a petri dish cesspool of grossness. The probability of me getting sick due to my compromised immune system is high,  So even if people with Lupus have the ability to go to work, there is always that chance they’ll come in contact with something that’ll make them sick. I’m no different-I miss at LEAST a week of work every winter due to some sort of bug.

5. Stress Stimulator.

Lupus flares can be brought on by excessive stress.

While stress in life is inevitable, those with lupus should either take steps to avoid it, steps to minimize it, or steps to manage it. Some of the things already mentioned on this list are sources of stress (lengthy doctor’s appointments, commuting, etc.) Being in an environment with deadlines and people counting on you can definitely cause a great deal of stress.

 

Working while suffering from lupus isn’t for everyone. For those like myself who do: trust me…it’s no cakewalk. I work hard everyday to stay healthy, happy, and fulfilled.

I once read a meme that said something about an employee dying and an employer posting the job online before the funeral. Grim, I know. But…the point? Take care of YOU. FIRST.