My Body is a Full-Time Job

"Noon – Rest from Work (after Millet)."  Vincent van Gogh, 1890. Image courtesy of wikimedia.org.
“Noon – Rest from Work (after Millet).” Vincent van Gogh, 1890. Image courtesy of wikimedia.org.

If you live with a chronic illness, you may have noticed that you work several jobs. Perhaps, you work full-time or part-time which is your first job. If you are a student, than classes and time spent studying is your second professional obligation. Your third occupation involves family, chores, and necessary errands. However, with chronic illness, it is your body that is your most demanding employer. My body is a full-time job. This is certainly not a new realization for me or for most people who cope with a degenerative illness over a prolonged period of time; but, it is a fact that has become ever more present in my life. This week, I saw my primary care provider to discuss updates on my treatment plan. I have been experiencing debilitating pain and endometriosis flares since December and have been undergoing two forms of physical therapy, aquatic therapy, acupuncture, local anesthetic injections, and a surgery to treat endometriosis. Explaining all of this to my doctor, she said: “Wow! That is a full-time job. Can you remind me again what triggered the onset of this recent flare?” I explained to her that what prompted the flare was putting in 8 am to 6 pm days followed by lengthy intervals of studying without breaks. By the time I returned home, even with drinking copious amounts of coffee, I couldn’t find the energy within me to exercise and so my muscle mass quickly deteriorated. My doctor’s response was: “That must be incredibly frustrating and saddening to you. An 8 am to 6 pm schedule is a normal day for most people. You didn’t do anything wrong except try to live a normal life.” However, a disabling chronic illness shreds and devours a conventional and normal daily routine.

When most people think of something as “chronic”, it usually conjures up the notion that it is stable. You have this illness. It is with you forever and it isn’t going away any time soon. We may even adjust, adapt, and incorporate it into our daily routine. Yet, chronic illness is a life-long fluctuating disease with unpredictable timing and consequences.  What we imagine, desire, and prepare for in life is always subject to change. We are sometimes faced with the thought: “I would have made a great (fill in the blank) if it wasn’t for this disease.” I don’t think most can or have to imagine that reality. Therefore, we are not just dealing with the pain of the disease but a new biography. One in which our new occupation is our body. When most people retire from what they do for a living, it is out of age—consequences of normal wear and tear on the body. But, I was in my twenties when I first got sick. I had only graduated from college two weeks prior when the first of my medical conditions occurred. My memoir was thus altered from a normal foreseeable path to one that couldn’t anticipate what was going to occur from one month to the next. When I make attempts at holding my disease at bay and living a normal life, I am cruelly reminded that illness annexes all aspects of life. A fact that is all the more present if you live with an incurable disease because medical information and a cure is lacking and a more existential means of coping has to be derived.

If one is fortunate enough to have a “real” job, much of this balance relies on the understanding, flexibility, and patience of others. This may include having to bring work home to finish because you work at a slower pace than others, more than the usual tolerated and accepted absences, and co-workers feeling like they are picking up the slack. Personally, there are times near the end of the day where I am in a fog. My body starts shutting down in pain and my brain seems to follow. I have had people look at me or treat me as if I am absent-minded, ineloquent, or stupid. Sometimes, I find myself explaining that I am in pain, on a great deal of medication, and my body exhausts itself earlier than most people just to avoid these assumptions. Yet, explanations such as these don’t seem to carry much weight in society. If I were to say that I was exhausted from working a full-time job and going to school while maintaining an additional work schedule than these limitations would be easily understood. However, what I described above is a normal and stable routine. Chronic illness, on the other hand, involves calamity, setbacks, changes and obstacles, new medication regimens, returning to old therapies and additional treatments, and reassessment of our biographies—our “self.” Our ordinary quests in life become extraordinary feats. We no longer have the luxury to say: “I’ll just do it tomorrow.” Tomorrow may be lost to our body. We have new demarcations and we push past them to live normal, productive, and fulfilling lives.  My body is a full-time job. I work my other jobs around its schedule. Not everyone can bear the impending threat of a life-long fluctuating disease with unpredictable timing and consequences, named “chronic illness,” and still find meaning in their biography. But, I do. You do too. I hope we both remember that the next time our bodies dictate the terms of our employment.

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5 Comments Add yours

  1. Pingback: Sunlight in Winter
  2. carlos says:

    excellent information

    1. Thanks for reading and for your lovely comment!

  3. Thank you so much for your comment. I always appreciate comments from you. I know you really understand when I say that “my body is a full-time job.” This is not something that is easily understood. So much time is dedicated to appointments, following through with medical recommendations, adjusting to new therapies and medications, and just feeling physically awful. I think the worst for me is the brain fog. I remember when I was in a PhD program in Political Science and I had accidentally missed one of my medications which happened to be a high dose anti-epileptic drug because I was working on this assignment with a fellow grad student at her house until 4 am. I had no sleep, was in an incredible amount of pain, and was experiencing the withdrawal symptoms of missing this drug. A big name professor was speaking in one of my courses and we were suppose to go around the room and ask an intelligent question. When it came to me, I just stuttered. Everyone in the room started laughing. The professor looked at me like I was unintelligent and I just left the room in tears. That was the first significant time I realized that I was no longer the same anymore. I couldn’t just live my life like a normal graduate student. I have found a different profession that is slightly more forgiving but it really depends on the person. I am learning to accept my limits but it means forfeiting timelines, goals, dreams, and those normal things. I know you understand and so does many other people that live with disease and I find solace in knowing that at least here, on this forum, I am not alone.

  4. typhany says:

    I discovered that I could no longer work even the simplest of jobs. My health was too unpredictable. I was only scheduled 2-3 days a week and when those days came around I still might not be well enough to go in. I usually had to be driven to work, and still was so tired, in so much pain and my brain in such a fog that I couldn’t stay for more than an hour or two. If I had a flare up I’d miss work for a month. I had to keep very careful notes on my time there because often the simple act of completing my timesheet, my client’s goals and my casenotes was extremely difficult. If I pushed myself to go in on a day when I was ill, when my next shift came around 2 days later I’d be twice as sick and likely couldn’t make it. That job was a huge wake up call to me. I realized I’d never work a regular job like I once did, and likely wouldn’t ever work again at all. Taking care of myself has become my one full time job. I have half a dozen specialists I have to see regularly, my “team” of physicians, who of course don’t talk to each other, so it’s up to me to keep everything straight. I spend a good portion of my time researching my diagnoses, my meds, new treatments that are in trials that I may some day benefit from, and learning terminology and symptomology so that I can better converse with the members of my clinical team and make clear to them what I’m experiencing.
    I can no longer be spontaneous, but planning ahead is just as difficult. Too far in the future and I may turn out to be too sick to keep plans I’ve made, but too near and I don’t have time or energy to prepare for visitors or an outing. It’s a frustrating new life.
    I know you work very hard to keep everything in balance, and I do remember the days when I was well enough to work, but only just, and a regular work schedule was so taxing I was lucky if I could get through a work week without calling in sick or leaving early at least one day. You’re definitely a trooper. On the one hand, I don’t envy your struggle because I did it for so many years and know how bad it can get, but on the other hand, I am envious that you’re still able to do it.
    Just be sure to listen to your body, and if it needs rest, just rest. I pushed myself so hard for so long, sometimes operating on sheer force of will alone, and finally found myself in the hospital, exhausted, half my body almost paralyzed, and knowing for certain that it didn’t have to happen that way. Be kind and forgiving to yourself, and don’t ever let your coworkers guilt you into doing more than you can handle. 😉

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