Private, Secret, and Alone: Chronic Illness and Feelings of Isolation

“Automat” Painting by Edward Hooper (1927). Image courtesy of http://www.edwardhopper.net/automat.jsp.

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.

"Morning Sun" Painting by Edward Hooper (1952). Image courtesy of Columbus Museum of Art.
“Morning Sun” Painting by Edward Hooper (1952). Image courtesy of Columbus Museum of Art.

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?

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12 Comments Add yours

  1. Carl Bullen says:

    I feel like this article has explained all the features of the chronic illness I’m going through, especially the social dimension. Its so true that you cease feeling like you have much interesting recent life experience to bring to social interactions – I feel a kind of terror at having absolutely nothing to bring, and even the ‘how are you’ question wraps me up in a very tight knot. My ability to relate has been severely limited, except with other ill people (also when really ill or really low I actually don’t care about most of what concerns people – I am interested, but I cannot *share* their plans, their personal developments, their new partners and their exciting social lives).

    I’m desperate to know that it isn’t “me” that has meant I’ve ended up isolated, but that it’s just down having this physical and mental health problem for ten years. In my more objective moments I can know that that’s true. At other times I’ve internalised many of the judgements friends gave me when we were closer (that there are people in objectively worse circumstances; that I need to do more to keep my social life going).

    Chronic illness is very difficult in a primary way. But these secondary impacts on relationships (or to put it a better, on how much emotional nourishment you are able to receive from others) are possibly a worse dimension of it. You don’t get out of it unchanged.

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  3. Amanda says:

    I needed to read this today. I appreciate the thought, effort, and humanity, that you poured into this piece. I often feel so very alone. Thank you.

    1. Dear Amanda,
      Thank you so much for your comment. When I first read it a few months ago, I was going through a health relapse and so your words helped provide meaning for me. I greatly appreciate your feedback. Keep in touch and I wish you hope, light, and comfort each day.

  4. MColumbus says:

    I can’t help but want to place your thoughts into a broader framework, though I do wonder about the utility. It would seem to me that chronic pain creates a private language in which the individual living in such a condition is the only person who can understand the situation in which they live. After all, it seems to me chronic pain is almost entirely private and personal, with the outward signs easily misconstrued as some sort of social deficiency. I wonder if pain like this could ever be properly communicated in the way we communicate mathematics or science. It seems that even the use of metaphor to communicate with others is limited since those without chronic pain do not have the same communicative touchstones as others. But then again, perhaps we, as a society have not found the right metaphor and that continual writing, which may feel like groping around in the dark, may bear some fruit at some unknown date.

    (It should be noted that I have not edited this, and clearly my thoughts are every which way. I think I am writing to distract myself from the writing I am supposed to be doing.)

    I do not think it is a stretch to say that the inability to effectively communicate the personal experience of pain has had some significant policy implications (I want to say the personal is the political, but that has some flashbacks). For instance, our silly war on drugs, even prescription drugs, has left doctors afraid to adequately prescribe pain management medication to those in need because they fear prescribing to those who may abuse the drugs. This policy is insane because it punishes those who need because some folk may take advantage of the system (broadly speaking this is the argument used against the welfare state, but that is a digression). It would seem to me that we (society broadly speaking) allow this insanity to continue because we cannot understand the private pain of those who want to try to lead normal lives.

    Well, I have rambled on enough.

    J.

    1. Hi J. Thank you for your thoughtful comment. I do agree with you that chronic pain and specifically communicating that pain to others has definite limitations because pain can never be outside of the subjective outlook. I also think the gravity of communicating pain (it is long-term and it often exists with very little treatment options) is a concept difficult to fathom to someone who does not live with a long-term lifetime illness. I completely agree that communication does, in part, occlude our ability to have a louder voice within the policy arena. I am glad that you mentioned a more macro manifestation of this post. Thanks again for commenting and I look forward to hearing from you in the future.

  5. Anonymous says:

    I can’t help but want to place your thoughts into a broader framework, though I do wonder about the utility. It would seem to me that chronic pain creates a private language in which the individual living in such a condition is the only person who can understand the situation in which they live. After all, it seems to me chronic pain is almost entirely private and personal, with the outward signs easily misconstrued as some sort of social deficiency. I wonder if pain like this could ever be properly communicated in the way we communicate mathematics or science. It seems that even the use of metaphor to communicate with others is limited since those without chronic pain do not have the same communicative touchstones as others. But then again, perhaps we, as a society have not found the right metaphor and that continual writing, which may feel like groping around in the dark, may bear some fruit at some unknown date.

    (It should be noted that I have not edited this, and clearly my thoughts are every which way. I think I am writing to distract myself from the writing I am supposed to be doing.)

    I do not think it is a stretch to say that the inability to effectively communicate the personal experience of pain has had some significant policy implications (I want to say the personal is the political, but that has some flashbacks). For instance, our silly war on drugs, even prescription drugs, has left doctors afraid to adequately prescribe pain management medication to those in need because they fear prescribing to those who may abuse the drugs. This policy is insane because it punishes those who need because some folk may take advantage of the system (broadly speaking this is the argument used against the welfare state, but that is a digression). It would seem to me that we (society broadly speaking) allow this insanity to continue because we cannot understand the private pain of those who want to try to lead normal lives.

    Well, I have rambled on enough.

    J.

  6. Daisy says:

    Thank you for another amazing blog post. I could relate to everything you wrote. I was especially relieved to read that someone else out there worries about being negative when they write about chronic pain and illness. I think that is my main fear and prevents me from regularly posting to my blog. Just recently I finally wrote a blog post without fearing what others would think. I was having such an emotional time and I desperately needed to express my feelings. What a relief it was to get the words out. A few days later when the depth of my sadness had lessened I considered deleting the post, at least I thought that would prevent anyone else from reading it and judging me. Instead though I convinced myself to leave the post online. After all, sharing allowed me to escape the feeling of alienation and the post did reveal as you say the “intimate world” of chronic illness. The reality of chronic pain/illness includes having intense struggles. Why should I keep trying to hide that in order to not make anyone uncomfortable or in order to make myself seem like I am “fine” and “okay”. Again thank you so much for what you wrote. I am grateful for having found your blog.

    1. Hi Daisy. Thank you so much for your heartfelt comment. Reading comments such as yours encourages me to continue work on my blog. Even with this post, I had the thought “this will be the last one” yet I find myself not being able to stop because I have found that opening up the window to my home has resulted in meeting people such as yourself who face similar struggles and that provides a sense a comfort. It has also become a type of activism for me as I feel that in some small part I help reveal the unseen face of illness. I read the post that I think you are referring too and I am so glad you kept it up. I too have often felt that the universe has turned its back on me and the anger and loneliness attached to it. I truly believe in the power of recognizing our self in others. That is how we get through the harsh reality of illness and how we make meaning out of something that seems so meaningless. So, please keep writing.

  7. This is a really great post. Sadly, it hits quite close to home, for me and many other people I know.
    A friend of mine has MS and lupus, she is often quite ill, unable even to get out of bed without assistance. She had a friend of nearly 20 years come to her town unexpectedly on business and was hoping to hang out, but my friend’s husband broke the sad news to her over the phone that his wife was very ill and would be unable to visit. The friend persisted, why couldn’t she at least come over? They see each other so rarely, she CAN’T seriously pass up an opportunity for a visit simply because she’s ill…the unspoken implication being that she’s always ill. However, my friend’s husband conveyed her regrets, stated that she was too ill for visitors, or even to talk on the phone, and that she hoped she’d understand. Her friend did not. She hasn’t spoken to her since, and my friend is of the impression that there will be no reconciliation before she dies, which she is all too cognizant of the fact that her death will likely be sooner rather than later.
    It’s sad how familiar this trend has become with my own friends. I try very hard to make them understand my situation so that there will be no hard feelings on the very frequent occasions that I must turn them down for visits or invitations to go out to do something. My efforts to explain what my life has become have been chided as being too negative, that I’m “dwelling” on things beyond my control and that I need to focus on the positives. I was a counselor for many years, I know all of the advice and platitudes. My efforts to convey to them the very drastic changes in my routine and quality of life are not meant for me, they’re meant for THEM! To help them understand, to give them an opportunity to empathize and be mindful of the basic needs they must take into consideration before attempting to “cheer me up” either through words or actions. “Getting out of the house more” is not always good for me, or what I need at that time. In fact, it’s very rarely the solution to my problem if I’ve become more ill than usual. I need rest, sleep, and lots of it. Nevermind that living in the desert and being told to avoid heat is nearly impossible. It’s 2am and still 95°. So dragging me off to a lunch in 110°+ heat while I’m nauseous and dizzy will hardly help my cause. People feel that since I’m not working I have a totally open schedule and they can drop by on super short notice, that this will surely lift my spirits. Because, everyone loves guests when their house is a wreck, when they haven’t showered in days and can barely stay awake. Sounds like a blast! So I ask them for notice, it gives me time to get everything clean and presentable and I don’t feel as bad about myself if they do come over. But then last minute, they cancel, because I have NO schedule (aside from dozens of Dr’s appts, and now thanks to the Feds, trips to the pharmacy to pick up my pain meds) so my time is not important, right? Nevermind it took me a solid week to clean because I have no energy and can only do a bit at a time.
    The thing that makes me so sad is that I know my friends and family care about me, and I applaud their efforts, but more and more it just seems easier to be a recluse than to deal with people who can’t wrap their head around the fact that I’m sick and in pain every single day, that life is not easy for me and it’s only going to get more difficult, that it’s NOT like having a cold or flu, my good days, or even good halfdays, good hours, or good minutes, don’t mean I’m getting better, they just mean I’m doing better then and all it takes is too much activity, too little sleep, too much heat, etc, and I’m right back to bad again, sometimes so bad that I don’t even want to deal with the ride home but I have no other choice.
    My brother has Crohn’s, and he often gets extremely painful infections throughout his GI tract. It makes the simple act of walking across a room absolutely unbearable. Our well-meaning but very ignorant mother expressed concern about him one day, and I concurred, he was very ill and should’ve been in the hospital. She told me that she thought he’d feel a lot better if he’d just get up off the couch and move around a little. I told her, he can’t! He’s very sick and in a lot of pain. He can’t move around, that’s the problem. She said, I know, and I think he’d feel better if he just tried.
    You can’t simply walk off an infection in your GI tract, nor can you pull yourself up by the bootstraps and muscle through a few brain lesions or ruptured disks. If his abdomen had been sliced open and become infected, no one would be telling him to try to move around a bit to feel better, they’d tell him to get to the hospital and get it treated immediately!
    I start to feel like a broken record: I’m sorry, I can’t, I’m too sick…no really, I’m too sick, I’m sorry… I find myself apologizing profusely and feeling guilty for things that are beyond my control, and the more I apologize the more I feel that it sounds like I’m making false excuses. It’s gotten to the point where it’s just easier to not answer the phone or reply to texts and emails than to go through the ordeal of answering all the questions that people don’t seem to want the answers to: How am I feeling, what have I been doing, any news on my treatments, etc. They don’t want to hear about my minor victories, (I did the laundry all by myself!), or more bad news, (MRI showed enhancing lesions, back on steroids again…), they just want me to lie. They’d like a nice, tidy lie. But I just don’t have the energy to hold their hands and walk them through my illness, I’m having a hard enough time dealing with things myself. It really just seems so much easier to hide away, cut ties with anyone who can’t make the slightest effort to understand, and just pick up where I left off with everyone else when I’m feeling up to it.
    Also, I remember the days before the MS when my back was my only issue and I’d have to drag myself in for important meetings and trainings. I, too, had to sit near to a door, or at the back of the room, just in case I had to stand up and walk around. Ah, the good old days. The last job I had I needed to leave the training and reschedule it because I kept falling asleep. Hehe It was then that I realized that I likely would not last at that job, nor any other. It was time to let go of the dream of continuing my career.

    1. Thank you so much for your comment and for sharing your experiences. I had been thinking about this post for a long time and I couldn’t seem to get away from the thoughts surrounding not only why I have lost relationships after I was diagnosed with two illnesses but also why I shy away from communication with certain relationships. Your testimony that you wrote: “I start to feel like a broken record: I’m sorry, I can’t, I’m too sick…no really, I’m too sick, I’m sorry… I find myself apologizing profusely and feeling guilty for things that are beyond my control, and the more I apologize the more I feel that it sounds like I’m making false excuses. It’s gotten to the point where it’s just easier to not answer the phone or reply to texts and emails than to go through the ordeal of answering all the questions that people don’t seem to want the answers to: How am I feeling, what have I been doing, any news on my treatments, etc. They don’t want to hear about my minor victories, (I did the laundry all by myself!), or more bad news, (MRI showed enhancing lesions, back on steroids again…), they just want me to lie” is one of the hardest emotional ramifications of chronic illness because we live in a culture of achievement and base accomplishment off of external standards (a great job, romantic partnership, children, and the like). Despite having to rehabilitate my body after my accident to do the most basic of activities of daily living, this is not viewed as an accomplishment. Yet, it is the hardest and bravest thing I did in my life. Braver than any scholarship or diploma or job, I have held. Those minor victories are major victories in disguise because there is nothing harder than seeing a former self change and transform under the weight of illness and still hold onto a piece of who you are. I know that. And you know that and we recognize that in each other. I think that is powerful.

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