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.