Not too long ago, I posted on twitter that Lupus patients
are all super heroes. I said that because we are able to do things that “normal”
healthy people do all while fighting a disease that is trying to keep us down. One of those things are… working!!
There is a large percentage of people with chronic illness
that is unable to work. My heart goes to those people because believe it or
not, there is nothing a chronically ill person wants more than to be able to
take care of themselves. Make their own money, have a sense of independence.
Since being diagnosed, I have had my fair share of days being off work due to
my illness. I’ve had to take breaks in between and because of that I sometimes
feel like I could’ve been further along than I currently am. Don’t get me
wrong, I am blessed to be able to hold down a full-time job (as of now), but
majority of my lupus family isn’t so lucky. What MOST people may mistake for lazy, really
have no clue what a chronically ill person is going through.
Chronically ill workers may have problems in meeting job
demands, they may experience physical, cognitive or sensory limitations, have
fatigue or pain complaints or other disease symptoms. Psychological distress,
depressive feelings, feelings of shame or guilt, lack of coping or
communicative skills, and non-supportive colleagues and supervisors may add to
work-related problems. It’s hard!!! But, I’m doing it. I feel a sense of pride
when I actually make it through a full 8 hour work day, 40 hour week schedule
without having to call in or crashing at the end of the week.
Here's a few tips that I use to make it through the work
week:
- Decorate
your workspace with positive affirmations and pictures of people and
things that motivate you.
- Make
your feelings aware to your co-workers & manager. You may have to sit
with them and explain exactly what lupus is. Print out literature to share
with your team about your disease if you need to.
- Prioritize
sleep. Make it number one. I usually try to give myself 7 hours or more of
sleep. (That sometimes don’t happen, but hey.. I try!!)
- Keep
energizing snacks at your desk.
- After
you clock out, BE FINISHED!!! Leave work at work and when you’re off take
that time to rejuvenate your mind and body.
- Know
when to step away and take a break. Go to the bathroom, step outside for a
second.
- Don’t
be afraid to ask for accommodations. Most companies (and a lot by law) are
willing to help you succeed in your position and if that means you need a
stool for your swelling feet, back support for your lower back, a certain
keyboard for your computer because you have joint issues… then ASK!!!!!
Now of course, everyone’s situation Is different. Some of us
work in environments that aren’t so accommodating and work with people who are
just flat out cruel. For those of you that do work in situations like that, I
strongly encourage you to find another job. Work somewhere where you are
appreciated and won’t have to feel guilty for having a chronic illness that YOU
didn’t ask for any ways. Because let’s be honest, if something was to happen to
you today, your company would go about their day and have your position posted
on the HR board the following day.
You’re the important factor here… put yourself first!
*For my chronically ill people who are unable to work… Don’t
feel any less of a person because of a disease that has disabled you. During my
times when I was unemployed I found other things that made me happy to
confiscate for the loss of my job (whether it was reading, volunteering
somewhere, advocating lupus online, etc.) I strongly encourage you all to do
the same and to remain positive because you’re still the important factor here,
and I’m rooting for you!
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