What My 'Full-Time Job' Entails as Someone With Multiple Health Conditions


“Do you work?” The question spills forth with a raised brow, the subtle reminder that the one asking is gainfully employed while I am…well…

I have had this question asked of me many times throughout my young adult life. In many cases it has caused me embarrassment, shame, anxiety, guilt and a lot of turmoil. I’ve always replied that I am a student. Which is true. In some cases I was a traditional one, navigating the halls of academia in college. I guess, because I am always learning new things, I am still a student, so I guess I am not outright lying in my response. At least I earned an Associate’s degree. A two-year credentialed ticket to somewhere…wherever that is.

 

If I could answer that same question today, safely, behind a computer (which I am, as it is an ideal strategy for me), I would say, “No. I don’t ‘work.’ Not in the sense of punching in a card or receiving a W2. I am technically unemployed. However, I do have a job that is pretty much a full-time position these days. It is called self-care amidst the journey through disability, chronic illness, mental illness and rare disease that encompasses a significant part of my life.”

While some people are engrossed in the activities of their young children, or catering to a spouse, many days I try to figure out what specialist I can go to about my Dercum’s disease, or what new supplements might reduce my swollen, itching, painful limbs. Medscape is like my virtual guest house, as I look for scientifically validated information about a rare condition that not even my primary care physician learned of during their training in medical school. I am not blaming them, either. It is just how it goes. When you have an illness with a name that is difficult to pronounce, that doesn’t even come up in many health system search engines, you cannot expect miracles when encountering the medical profession. (Heck, even the term telangiectasia took me a week to learn to pronounce!).

If I had a resume area to describe all my current job skills, I believe “making complex medical terminology understood” would be at the top of the list. I have thoroughly explained my condition to many people, and have been dubbed Dr. Shannon (which I am not, because I have no formal medical degree, but nonetheless apparently others think I know some things). My other skills include trip planning, chronic pain management, financial frugality and countless other attributes given my situation.

I never intended on becoming a financial planner, but when you have less than $800 per month to live on, you are forced to acquire such skills or be toast. Having more coupons than dollar bills in my wallet, detailed shopping lists and only getting new clothing items if they are under $10 are some of the financial rules I adhere to.

Grocery shopping while dealing with leg pain is quite the adventure. My one lipomatosis-filled leg likes to swell up on me and remind me of why I never want to go down the same store aisle twice. I’ve cut meat out of my diet, so I am fortunately able to afford basic food every month. One blessing of my invisible job is I’ve had extra time to learn about the cruelty-free product movement. So now I only buy personal care products that don’t involve animal testing. This gives me a sense of purpose and productivity in making a difference, when I am not “working” in the eyes of society.

I will admit, however, that some days, I don’t make a great difference, and put in vacation time. Like the two weeks I recently spent bedridden with depression, hardly eating. My Mom came in my room and held me close. She was brave to do so, given that I hadn’t showered in a few days.

Oh, and that is another job task. Mastering bathing and shaving with Dercum’s disease. My legs are prone to cellulitis and staph infections so I have to be careful. If I manage to not nick my legs, I’ve put in a good day. I am often tired and mentally fogged so it takes me longer to get ready for the day, especially if I have to go out. I try to take pride in my appearance, despite depression and sometimes just not giving a hoot when it all gets too overwhelming.

Sometimes it hits me hard and I have to snap myself out of the many funks I get in. Such as realizing that weeds are growing under my car because it hasn’t been driven in several weeks… My car that needs brakes. Brakes that cost $300 when I have $274 in my checking account and the month isn’t yet through.

The next time someone asks me in person if I “work,” this will be my response:

“No. I’m not working. Not working to beat myself up anymore over not being able to work, when society already does it for me.”

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Thinkstock photo via Sashsmir.

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