Working while managing serious or deadly illness?
For years I made the false assumption that persons with serious or deadly illnesses would simply claim disability to stop working and focus everyday toward self-care and management of their illness.
It took the revelation of my own situation to help me understand how wrong I was.
I write this article in the hopes of helping others who deal with a similar situation. To let them know they are not alone and help anyone newly diagnosed with advice and guidance.
Hide or Reveal?
Might be the biggest question of all.
Many would say that even writing or liking an article like this is enough to doom your career aspirations, let alone fully reveal your illness to your employer and co-workers. I can't give you advice on this. It comes down to your comfort level.
Personally, I think myself both brave and foolish for sharing publicly. However, I sincerely hope to help others by sharing my story and related advice on a topic I see few articles about.
Now if I was out of work tomorrow and needed a new job urgently, would I quickly delete all illness-related posts? Probably. And the longer I remained out of work, the more inclined I would be to delete out of fear of snap judgments of who I am and how I can perform.
So the rest of the article is advice based on my experiences sharing with a very wide audience of past and present coworkers.
No One Truly Understands
Remember no one will ever truly understand what you are going through nor can they, even when they try.
For example, if you speak to others with the same exact condition, diagnosis, and comorbidities, they may empathize, share similar situations, and offer advice, but never truly understand given you are individuals with your own personalities, pain tolerances, motivations, home and family situations, etc. Essentially a multitude of factors always makes your situation different from another's.
Many Have Advice
Your coworkers truly mean well when giving advice. But you will struggle with the simplicity of it. Your initial reactions might be that he or she did not listen nor understand, or worse that he or she is being dismissive of something that is life-changing.
- we all have aches and pains
- take more breaks or a vacation to relax
- try reducing stress
- drink Green Tea
- you don't look sick
Remember that the fact that they even try to offer advice means they are concerned and wish they could offer something to fix it.
Personally, I struggled with "you don't look sick" the most given my body is usually screaming with pain daily. It took me a while to take this as a compliment about how I continue to stay in control and manage my illness each day.
Your Supervisor or HR Will Acknowledge Based on Policy or Law
Since there is a constant fear of lawsuits in the world today, communicating with your supervisor or human resources may seem like a cold and scripted experience.
Don't hold it against them. They are human beings doing their jobs.
As soon as the topic comes up there can be legal and policy ramifications if the wrong thing is said or emailed.
For example, if your supervisor or human resources representative says "well, you don't look sick" and fully intends it to be complimentary, it could cause repercussions for them and the company.
Know Your Benefit Options
Become knowledgeable of your various benefits options and eligibility for government-mandated acts for your own sake or the sake of your kin.
- Health Plans
- Out of Pocket Deductibles
- Prescription Plan Co-pays, Approval Processes, Mail Order Option, Specialty Pharmacy
- HSA or FSA Accounts
- 401k or other retirement program vesting and beneficiaries selection
- Additional Life Insurance amounts with no health questions
- Conversion of Term Life Insurance policy to Whole Life without health questions option
- Short & Long Term Disability
- PTO policy
- Temporary Leave of Absence policy
- FMLA eligibility
- ADA Reasonable Accommodations
- Tele-commute work from home option
- Travel requirements
- Who within Human Resources your next of kin would contact
Your Coworkers Don't Care and That's Okay
Everyone's got something, so the saying goes, and this is true.
Your coworkers are all dealing with work and their own personal lives. Almost all of them struggle to manage that and the unknowns it brings daily. There's little time left for them to be concerned with you beyond the latest meeting or email. And that's okay.
Thinking back over the years I did the same when coworkers shared something with me. I like to think my situation makes me more caring and concerned for others now, but look at the experience it took to get there! Some of your coworkers now may not have that same kind of experience until they are age 100+.
From my own experience, I can tell you that...
- A very few will avoid you like the plague afterward with an unfounded fear you will transmit your illness to them.
- A few will avoid you afterward because they feel uncomfortable now or are ashamed at not knowing what to say.
- Many will listen, offer concern (aka advice), and thank you for sharing, then never ask how you are doing or speak of it ever again.
- Some will listen, ask questions about your illness, and ask how you are doing periodically.
You Will Have Really, Really, Horrible Days
I don't blame you for thinking "well I know that already".
But hear me out please.
The culmination of work, family, and illness stresses will intersect many times and push you to the breaking point. And that can last minutes, hours, days, or weeks. It’s a rough and horrible experience to push yourself through. And since only one of the three is something that can be changed, work will get your focus the most.
You will question things and ask why in frustration, sadness, and/or desperation...
- why am I still doing this?
- why do they think THIS is so important in life?
- why am I not on disability?
- why do I have to be the one who works?
- why can't others who seem healthy get their job done?
- why do I have to endlessly suffer?
- why do I risk enduring all this stress and potentially dying while still working?
...but like so many other things those days eventually pass.
And you may need to remind yourself of the drivers behind why you are still working...
- supporting family and taking care of others
- ensuring that schooling or funds exist for your kin
- retirement benefits whether for you or your next of kin
- health benefits
- trying to live comfortably
- maintaining your career motivations and purpose
- working with people and helping others
- teaching, leading, or mentoring others with your life experiences
- a role that makes you more than your illness
You Are Ridiculously Strong
This should be easy to remember, but it's not and often lost in the fog everything you've read above.
You are ridiculously strong, I mean like superhero strong.
Life and illness have slammed you to the ground physically and mentally, yet you still get back up each day.
Some days it takes longer to metaphorically stand than others, but you still carry yourself forward.
Remember, you come to work with your own lethal and pain-inducing kryptonite hanging around your neck, and yet you are present, producing, managing, delivering, leading, teaching, etc.
More "Life With Lupus" articles by this author...
- The Wolf Within Me
- When The Wolf Escapes
- Perhaps I'm A Better Man...Make That Wolfman?
- The Life I Lost
- Everything Hurts
- Coping At Work
- Dealing With Doctors
- Home Remedies
- Relating To Others
- Online Community Review - BetterDays
- Vaccination Shot #1
- May Is Lupus Awareness Month
- The Patient And The Weather Website
- Awareness Month - Did You Know?
- Survivor Spotlight - Shakita Jones
- Antiphospholipid Syndrome
And related articles by this author...
- Working With Serious Or Deadly Illness?
- Biggest Surprise Working With Serious Illness
- Lupus And Raynaud's Disease
- No One Gives A Fork How Many Spoons I Have
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