It was 6 am on a Monday morning and a warm and hazy sun flooded my room reminding me that I had an appointment to attend in an hour. I had just fallen asleep in what seemed like mere minutes ago. I sat up in bed sipping coffee and feeling hung-over from medications and a terrible night’s sleep. “I’m going to cancel my appointment.” I thought to myself. There I was, on the phone, explaining to the receptionist why I was unable to attend physical therapy that morning. To her, it appeared as if I was unwilling. “So, you are cancelling because you are tired?” She asked. Her confusion is understandable. After all, I am part of a sleepless, over-worked, and over-stressed society. Chronic illness, however, is a state much harder to convey. It is a condition that leads to feelings of social isolation both imposed onto you and reinforced by the self. Illness entered into my life in my early twenties, meaning that I had a life prior to sickness, and I have people in my life who knew me prior to diagnoses and after. It can be very difficult to sustain these relationships because a known former self exists that has slowly crumbled leaving who you are now. Who you are now doesn’t feel as equally important. Social isolation, in the context of chronic illness, is a difficult subject to write about for two reasons. First, it is incredibly complicated and wrapped in ideas of cultural productivity, voluntary isolation, and past attempts and possible rejections when we have tried to explain illness to others. Second, it mandates complete honesty and with candor comes vulnerability.
The relationship between social isolation and chronic illness is developed, in part, because illness is usually understood in the context of acute symptoms. Having the flu or a common cold is universally understood. We feel ill and experience the loss of function and routine. We rest and take medication. We feel better. When illness only causes temporary interference in someone’s life than empathy is effortless. However, when disruption is an every second of everyday occurrence, it is much harder to accept, identify with, and understand. Take two common symptoms of chronic illness, chronic fatigue and chronic pain, for example. The type of illness fatigue doesn’t resolve itself with sleep nor does chronic pain involve a mere ache or muscle strain. To experience something that is chronic in nature means that it is long-term in effect. Long-term physical suffering viewed from a relationship standpoint usually plays out in the following manner. When the chronically ill person is first diagnosed or is initially experiencing symptoms of his or her long-term condition, those around them rally their support and assistance. As time passes, so does support. The irony of this scenario is that with time, physical conditions and symptoms often worsen setting the chronically ill person even further apart from others. It cannot be denied that a diagnosis of chronic illness poses an existential dilemma for the individual that is suffering. However, this extends to those that witness this suffering as well because pain and suffering are usually seen as having only a remote probability of occurring. When a loved-one is struck with disease, that probability has reached home and the chances that it could happen to them is now a distinct possibility. It is conceivable then that the ill person has inadvertently forced the people in his or her life to confront their own mortality and invincibility. There is also actual physical isolation at play here. Chronic illness physically confines individuals from social activities and opportunities. If chronic disease limits an individual from working or from going to school, than that takes away the prospect of meeting people who share common experiences. Doctor’s appointments, thus, become an individual’s main outlet for socializing, throwing the person’s focus back on his or her illness. When treatment procedures, pain, medical appointments, and the fear of one’s body plateauing become the structure of everyday reality, there is this sense that there is nothing occurring in life worth communicating to others. The reality of illness is so mundane who could possibly be interested? Physical isolation also comes in the form of disappointing others and having to constantly cancel and reschedule plans due to illness. After a while, even legitimate excuses wane and personal relationships suffer as a result. In an interview with a chronic pain patient, published on this blog, I asked the respondent about feelings of isolation. The response was:
Yes I do [feel socially isolated]. If I am included in any activity with friends, it’s all about — and his/her pain. Can he/she do this or that?? What accommodations have to be made on his/her account?? I don’t take part in hardly any of the activities I used to be able to do before the back surgery failed. I feel isolated socially.
Furthermore, living with a chronic illness sometimes causes an individual to be home-bound or placed on bed rest mandating that friends and families put up the effort and time to visit the ill person and this can lead to an absence of feelings of reciprocity.
In past posts, I have often written about the unpredictability of chronic illness and how the instability of illness causes one to feel a loss of control. Illness is fickle. For a period, it may attenuate and then rear its ugly head in a lengthy episode causing one to think that it will never remiss. Illness is so unpredictable that this saga may even play out in a single day—pain in the morning, feel okay for few hours, pain in the evening. It is the precariousness of illness that seems difficult to understand because ultimately the individual with chronic illness seemed fine just hours ago. This leads to mistrust or doubt about whether the individual actually has an illness or perhaps it isn’t as serious as he or she has purported. When the illness is outwardly invisible, such as with chronic pain conditions, acts of repudiation often occur. For example, I recently spoke with a chronic pain patient who had a fusion, decompression, and spinal instrumentation surgery on her cervical spine. While in the six months that she recovered from her surgery without abatement of pain, she told me that her husband would often come home from work angry that she had not completed household chores.
The dishes were piling up. The laundry wasn’t done. He didn’t understand that time to recover was not time off. I wasn’t taking a holiday. I was ill. On top of excruciating pain, I also felt lazy and worthless. His reaction showed me that he felt that way too. My worse thoughts about myself were confirmed by him.
There are also periods of voluntary detachment from others. As I suffer my own health setbacks, there are periods where I have cloistered myself away from others and limited my interactions with friends. Part of this behavior relates to the feeling that time spent sick is time completely lost as if it didn’t exist at all. It involves sporadic periods throughout my life that are void of experience. It is as if I have fallen in a canyon, clawed my way out, re-familiarized myself with the land of the living, and reentered the healthy world. It is only then that I feel comfortable to resume past relationships because it is at that point that my life begins again. I am newly interesting, productive, and happy. However, relationships involve more than just the dynamics of the self. The abandonment of friends and family during periods of suffering hurt. It’s simple but nonetheless true. Upon returning from prolonged bouts of illness, those relationships are transformed and resentment sets in. It is uncomfortable for the non-ill person to view their loved one’s physical deterioration and to know what to say without firsthand experience of severe illness and it is difficult for the chronically ill person to acknowledge that discomfort when it takes the form of neglect. Additionally, having an illness is time-consuming. Most days, I have three medical appointments in addition to life responsibilities, medical regimens, necessary exercise routines, and combating fatigue. Self-isolation also involves the fear of being viewed as too negative. Even when writing pieces for this blog, I run down the following questions in my mind. Is it too negative? Does it appear as self-pity? Do I sound like I am whining? Will it alienate the people I personally know who read this blog? These are the emotions that go into writing a piece despite the fact that one of the primary intentions of this blog is to elucidate and recognize the feelings related to chronic pain and illness so that others that suffer feel less alone. The fear of negativity or the potential of being viewed as negative is real and confining both in interactions with acquaintances and within intimate relationships.
I can only sit for a maximum of thirty minutes without severe pain. However, I am in constant fear of disrupting a meeting or a lecture. I pull out a bath towel for lumbar support in a chair. Turn on a tape-recorder to catch something I missed while I was in the lady’s room doing my stretches so I can sit for another thirty minutes and practice this ritual all over again. I’m asked to sit in the back of rooms towards the door so as not to disrupt others’ concentration. I have a special spinal seat that I carry around with me to place on chairs. These are things I need to function in my life. Yet, it’s not that simple. These are also things that make me different. That causes me to stand out in a manner that I feel isolated. That evokes questions from others. I judge myself by a standard used for a world that is healthy and able. Since, I no longer feel as if I belong in that world, I retreat from it. Even without a disability, maybe this is a sentiment one can relate too. Being different, standing-out, going against the grain, or living on the margins of society leads to labels that we all have heard or maybe even used like “out there” or “freakish” and makes the roads we all have to travel in life more difficult. Identity is such a complex and convoluted structure but it plays a key role in isolation. Having a condition, such as chronic pain, allows for choice in how much one reveals to another. Outside of this forum, I often don’t reveal physical suffering to others even within intimate relationships until my body halts my valiant efforts of “normalcy.” However, I am slowly arriving at the conclusion that this desire to distance myself from my own physical limitations needs to change. Why? The very act of hiding a piece of your own identity from others is in of itself an act of isolation. It is a form of dismissing yourself as not fully human and it denies others of seeing your humanity. It is only through our humanity that we recognize, grow, and form intimate and long-lasting bonds. Chronic pain is a part of my humanity. Likewise, time spent coping with this disease informs my identity. It is not the only part but it is certainly there. Sure, revealing this identity may lead to some people running away. It might also lead to an integration of the self, a feeling of wholeness, of honest communication with others, and the stark reality of personal relationships. In the end, perhaps self-alienation is a larger price to pay than revealing the intimate world of chronic illness?