Working is one of the critical challenges many lupus patients must face. Work is seldom easy for anyone, with or without lupus, or people would not expect pay to entice them to report each morning to do their jobs. Work — the term implies effort, expended energy, accomplished acts, labor and toil. None of these terms conjure pictures of pleasure and ease.
Yet we work on, because the simple truth is that money is an essential resource and work is one of the most honorable ways to get it. (Discussing any dishonorable ways to get funds is well beyond the scope of this blog!)
Judging either work or disability as superior to the other, or more appropriate for a lupus patient, would be incredibly unkind and short-sighted. However, some dueling pros and cons of work vs. disability do merit a little discussion. For each lupus patient, the side of this debate they find themselves on may change from one season of their life to the next.
Lupus is predictably — unpredictable!
Some of us with lupus may never have to face the decision of needing to draw on disability benefits, but very many lupus patients do. Patients with milder lupus may never experience symptoms that threaten their ability to hold down their job. However, some of us find that activities of daily living nearly or completely become an insurmountable challenge.
Sometimes, life with lupus is just plain difficult, and this can threaten our livelihood.
Some days I carry on a silent debate in the interior of my car while commuting. Should I keep on working with lupus if it is very hard to do so? As I work through my arguments against my imaginary debate opponent, there are a few competing points I make. Routinely, for the fair and complete exposition of the issues, I switch sides with my opponent. As I weigh these issues, I invite God to join my debate, and to counsel my heart with His wisdom and to lead me to each change in path I should take.
The Case for Working
Many factors help make the case for continuing to work with a lupus disability, versus dropping out of the workforce due to chronic health difficulties. No matter what it takes, some people like me feel compelled to try to keep their jobs as long as possible, even against sometimes almost insurmountable personal odds.
Here are some of my favorite arguments in support of working that compel me for the present to remain in the daily battle:
- Living always takes money and I have more of it when I work (pretty basic, I know, but extremely obvious and true)
- Life with doctor visits and prescriptions costs more money than life without them
- Superior medical care is available with employer’s insurance coverage
- Keeping busy, active and distracted from my personal health problems is better than sitting at home staring at the walls
- Opportunities to help others and make a difference contribute meaning to my work
- Socialization in the workplace promotes my psychological health and balance
- Self esteem is derived from completing workplace projects and accomplishments
- Fulfilling opportunities to mentor and train co-workers and work group team members give me satisfaction
- Having a motivation to get up and push myself every day keeps me active
- Intellectual stimulation and challenge keeps me vital and mentally sharp
The Case for Retirement
Here are a few of my opposing arguments, that, if they become true could cause me to switch sides in the debate:
- If I reach a point that continuing to work makes my lupus flares get worse and worse
- Working takes a lot out of me, and someday it may require more than I have to give
- Mornings are really hard, no matter what! This won’t get easier
- The stress of my career and job responsibilities may become more than I can handle
- If I get to a point where I am pushing too hard and getting sick after every major project
- If persisting memory problems get bad enough to make managing workload and staff difficult
- If I need more rest than I can get in the evenings and on weekends
- When I reach the magic retirement age that my pension becomes enough to live on comfortably, and is not going to improve enough to merit working longer
- (Shudder at this thought) If we should ever see the repeal or undermining of protections given to people with chronic serious health conditions under the ADA or FMLA
- If I ever permanently lose the heart to fight the daily fight
These are the some of the issues that are vetted out during my ongoing debate about working vs. disability. It is during the most overwhelming times of lupus flare that I am forced to focus on the nearing crossroad ahead, to view the split in the path before me heading in two contrasting directions. Several times in my career, I have approached the crisis of such a crossroad.
I keep working, and my debate continues. In the quiet of my car I drive on toward work each day, and ponder the road that lies ahead. If in the interior of my vehicle, the speedometer, car radio, or steering wheel ever respond to my solo conversation, I will know with certainty that the long debate is finally over.
Until then, to quote the seven dwarfs of Disney cinema fame, I whistle and sing the happy song, “it is off to work I go.”