Legitimately Sick: Chronic Pain and Stigmatization

Albrecht Durer, The Suffering of Job A key to understanding the stigmatization of chronic pain is the notion of deserving versus undeserving of suffering  Image courtesy of wikipaintings.org
Albrecht Durer, The Suffering of Job
A key to understanding the stigmatization of chronic pain is the notion of deserving versus undeserving of suffering Image courtesy of wikipaintings.org

Ina* was 23 years old when she received her diagnosis and subsequent surgical treatment of Endometriosis, the intensely painful disorder where endometrial tissue implants itself on organs outside of the uterus.  Endometriosis is a disease most often characterized by pervasive pelvic pain, although, symptoms are varied and ubiquitous.  It is one of those conditions that lend itself to under-treatment, misdiagnosis, and under-reporting for an assorted array of reasons.  Among those reasons are it persists without a known cause of the condition and certainty of the disease comes only from laparoscopic surgery.  The day Ina had her surgery and the closest to a definitive diagnosis of the disorder, she received a call from her sister.  Ina explained to her sister that the surgeon removed a fibroid, scar tissue, chocolate cyst, and performed a presacral neurectomy, a surgical removal of the presacral nerves that transmit pain signals from the uterus to the brain, reserved for patients that experience the most severe form of pelvic pain.  Ina’s sister replied: “Wow, so you actually were sick. You mean the doctor actually found something?” When Ina had to undergo a second surgery, there were no further calls from her sister regarding her health—the very thing that had dominated her life for the last four years.  What does it mean to be legitimately sick?  Can we move beyond the Talcott Parsons idea of the “sick role,” the notion that sickness is only legitimate for a period of time before patients are viewed as benefitting and rewarded for illness? What are the reasons for the stigma associated with pain, disability, and illness?

In her powerful and complex book, In the Kingdom of the Sick: A Social History of Chronic Illness in America, Laurie Edwards (2013) discusses the nexus of patient agency, blame, and opprobrium often assigned to those that exist in the category of the unwell.  She raises several important points both historically and currently when it comes to societal acceptance of healthy and unhealthy.  One such argument involves the idea of deserving and undeserving of affliction.  When discussing the history of tuberculosis (TB) she looked at a creative writing piece from the early twentieth century, noting that certain patients were described as unusual “candidates” for a TB diagnosis because they were middle class, employed, married; and, therefore, deemed “undeserving” of having a disease (Edwards, 2013).  Furthermore, she traces through the notion that the chronically ill are often pressured to do something that they are not currently doing to regain health.  Edwards argues that in a world that esteems and touts youth, fitness, beauty, and achievement to be chronically ill is incompatible with societal norms.  The consequences of these social conflicts are that patients are forced into a space that is both mental and physical. Responsibility falls to the individual to “manage” their pain. Patients with chronic pain are constantly required to validate their symptoms both internally and externally. (The very historical notion and view of chronic pain as a symptom and not a disease invokes this problem of validity.)  More often than not, patients with chronic pain are expected to perform daily routines at the same pace and consistency as non-pained individuals without so much as a mention of suffering because to do so has the potential to be negatively labelled.

To expand the discussion of stigmatization and chronic pain, one has to look at the concept of fear and mortality.  A fellow pain patient was undergoing surgical treatment for degenerative spondylolisthesis with spinal stenosis, a condition that caused widespread pain and weakness in the legs.  In the same week, her friend was in the hospital giving birth. This pain patient remarked that all of their mutual friends visited her friend that had given birth, greeting her with cards and flowers; and, yet, no one visited her after her spinal surgery.  Is it that pregnancy is gloriously life-affirming and pain and loss of mobility is on the other spectrum serving as a reminder of the fragility of life? Do we turn away from those that suffer with the latter because it prompts us to remember that our bodies are degenerative and provides for us a glimpse into the possibility of our own future?   The political philosopher, Thomas Hobbes, stated that it is so innately given that man’s greatest desire is to escape death and that this certain motion of life is so profound men would relinquish some power and enter into commodious living with others to escape its consequences.  Is there emotional avoidance of the people that fall into the category of the “chronic” because we inherently want to evade confronting the impeding experience of what is meant to languish in the state of the “chronic”? What is the other side of this coin?  The philosopher, Friedrich Nietzsche argued that the one thing that is needed in life is to confront all the strengths and weaknesses of our own being.  He suggests confronting all of the pains and joys of life as if they were to be returned to us daily to do again. He challenges us to speak our words and carry out our actions as if they were handed to us an innumerable amount of times in the same fashion.  Perhaps, therein lies what we should see when we look at one another: the chronic is not a reminder of our own vulnerability, but as Nietzsche stated, of our “life as [we] now live it and have lived it [and we] will have to live once more” (1967).

Tell me your story. Has there been a time you felt stigmatized because of chronic pain?

*stories were used with permission from the individuals in this post but the names and ages were changed


9 Comments Add yours

  1. I’m extremely inspired with your writing talents as well as with the structure to your blog. Is this a paid subject or did you customize it yourself? Anyway stay up the excellent high quality writing, it is rare to look a great blog like this one these days..

    1. Thank you for your generous comment. This is not a paid blog but a passion and personal interest of mine. I started it because I wanted to build and know a community of people that suffer from chronic pain and illness. Likewise, I wanted to talk about research, stigmas, support, and nuances in the context of chronic pain and illness. Your readership is greatly appreciate.

  2. Very nice post. I just stumbled upon your blog and wanted to say that I have really loved browsing your blog posts. After all I will be subscribing in your feed and I hope you write again very soon!

  3. typhany says:

    I’ve lived with chronic pain for many years. Degenerative disk that started more than 10 years ago in the lumbosacral area and has since also developed in my neck, unspecified ovarian failure that causes extreme abdominal pain as well as a host of other terrible symptoms that has resulted in a couple of surgeries (one of which discovered that I had uterine fibroids. Yay.), and most recently MS and fibromyalgia.
    Most of the time my pain has been dismissed most harshly in the work environment. I had supervisors constantly trying to tell me that they “understood”, and in the same breath chiding me for missing work for Dr’s appts and due to pain. One time when my back was flaring up and I could barely walk, when I called my supervisor to call out for the day (and possibly the rest of the week), she asked me, “so they’re going to give you pain meds and then you can come in or what?” I said no, I take pain meds every day. I’m in pain every single day. I’ll probably have to get cortisone shots in my spine which may take a few days to schedule. So she sighed heavily and basically said that I was making a choice to not come in even though I’d already missed so much work.
    At another job, as part of my duties I did my own filing, as it was a very small office. I repeatedly asked my supervisor for assistance in filing the bottom drawers, as bending and lifting are difficult for me. I offered to trade my bottom drawer filing for someone else’s top drawer filing. She said I was “complaining” and “refusing” to do my work and fired me.
    I often had coworkers chide me that I was too young to have back problems that were THAT severe, and that when I got to be their age I would know what it was like to feel achy. Nevermind that I wasn’t just “achy”, I would be in so much pain sometimes that I had to crawl across the floor just to get to the bathroom.
    When I had my first major MS flare up I went to the ER, they sent me home. I went back a week later. I had a headache so bad it was making me nauseous, very painful muscle spasms in my right arm and leg and sporadic loss of gross motor function on my right side as well as almost full loss of fine motor in my hand. The neurologist at the ER told me they weren’t going to find anything, because there was nothing wrong with me. He said my symptoms were psychosomatic brought on by stress. But…they’d run some tests anyway. They found lesions, lots of lesions, in my brain and spine. I didn’t get so much as an apology.
    I’m so tired of having to justify how I feel to people, practically pleading with them to take me seriously that my pain is debilitating, that the damage inside my body is real even if they can’t see it. If I was stabbed or lopped off a finger they couldn’t dismiss that, so why is it so easy for them to be dismissive when I say there are ruptured disks in my spine and lesions in my brain and fibroids in my uterus?

    1. Thank you for this amazing testimony of what it is like to live with pain–severe burning, imprisoning, and debilitating pain. I read what you wrote and it is as if I penned it. I too have had the “you’re too young” speech. Once, I had an occupational therapist just slightly older than me cry because she was envisioning herself in my position. Which is devastating considering that we entrust hope in those who treat us and hope is fleeting when pain is constant. However, where I find hope is with someone like yourself who shows constant bravery for facing each day, each task, and each work place insult. There is no medal in this world for trying to live a good life despite excruciating pain but it is the hardest thing anyone can face. That is where my hope is.

      1. typhany says:

        Well unfortunately with the MS and fibro now I’m just too sick to keep working. I tried, lost two jobs, and finally threw in the towel. It’s difficult to have to humble yourself and admit that your body is just too weak to do the things it used to do, the things you want it to do and wish it could do. I know my life wasn’t my job, but I helped people for a living and now I can barely help myself. It’s a very difficult and sad life change. I’m too young to be disabled. I have an entire lifetime still ahead of me to live with this and it’s a very scary prospect. I try not to think about it. Hehe
        My mom is also disabled, but she’s more than twice my age, and not to diminish her pain in any way because I know she’s hurting too, but she always likes to compare our situations. Hers comes from normal aging, and it’s something I would’ve expected from my body at her age, not mine. She’s a “one up-er”. No matter how bad you’ve got it, she’s got it worse. It’s like she has no ability to express empathy, or even sympathy, because she thinks she should be the one receiving it. My brother has Crohn’s, which is quite painful. She told me that she thought he’d feel better if he just got up and moved around a little. Well, he’d certainly feel better if he COULD do that but he can’t! You’d think at least our own mother could provide some solace. Apparently that’s too much to ask. :/

      2. It is very hard not to think about the future but plan for the future at the same time. It is scary. But we never know what lies ahead good or bad. As a person who does not have MS but a severe injury to the spine and endometriosis, but who is studying to treat and research inflammatory and neurological diseases, I can say that we are learning more about the nature of these diseases everyday and that is a step towards unlocking better treatments and possible cures. At least I tell myself that because in some small way it helps me to stay in the now–that the will and passion to live and possibly help someone in pain or terrified of the future is stronger than the pain itself. But, you know, you are still helping people. You write and even these two comments have helped me feel more understood. Who knows who will stumble upon this and feel connected to another person who is experiencing similar struggles. I really understand your comments about familial support. Most of my family does not even acknowledge that I deal with two diseases and the related aftermath. That is why I think patient forums are so important. Everyone has the desire to share, to be understood, or at least have someone attempt to understand.

  4. I am often to blogging and i really appreciate your content. The article has really peaks my interest. I am going to bookmark your site and keep checking for new information.

    1. I am so happy to read that you find my blog interesting and value the content. I put a lot of research into the weekly topics. Thank you for your comment. Keep in touch!

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