Project 1 Invention Work

First Topic Idea

For my first project, I’ll be looking at how individuals living with fibromyalgia in Tucson, Arizona perceive themselves and how they feel they others perceive them. There are five million individuals living with fibromyalgia (“fibro” to many who have it) in the United States, and I’m one of them. Diagnosis and treatment can take quite a while, especially among men. For me, diagnosis took thirteen years. That was in part because of the perception of fibro as a women’s illness and diagnostic criteria.

Years ago, I decided to do an informal experiment. I decided to be completely open about my chronic health conditions with everyone in my life, including strangers if the topic came up. The results? I lost track of how many strangers said the following things:

“You don’t look sick.”

“You just don’t want to work.”

“Maybe you’re just depressed.”

“Isn’t that something women have?”

“You can’t really be that sick.”

“That’s not a real condition.”

And more. That’s not including scoffing and eye-rolling. From this ongoing experience, I’ve learned that not only are most individuals ignorant about chronic illness, many also believe -falsely - that chronic health conditions like fibro are entirely the individual’s fault and failure. Which is why I’ll discuss interpretation biases and how they affect perception. One example of an interpretation bias is the fundamental attribution error (FAE). When an observer attributes the actions of an individual entirely to that individual, that’s the FAE. It’s an error in perception because the attribution doesn’t consider situational factors or the possibility that the observed behavior may not reflect how the individual usually behaves. The beliefs of the observer also play a role, and this leads into other attribution biases.

My interviews will be members of the fibro group I belong to here in Tucson. From chatting with some members at our meet-ups, I’ve gotten the impression that nearly every one of us has experienced the same ignorance and hate. This project is a great opportunity to further research this interest of mine, seek the experiences of others in a similar situation to myself, and seek solutions based on research that my be more broadly applicable to those living with chronic illness and their allies.

Project 1 Freewrite

Community topic: The experience of those living with fibromyalgia in Tucson, Arizona.

Issue: How individuals with fibromyalgia feel they are perceived and how they perceive themselves.

Stakeholders: Primary:those living with fibromyalgia and their allies. Secondary: those working with individuals living with fibromyalgia.

Exigency: Five million Americans live with fibromyalgia, with perhaps more undiagnosed, especially men. Fibro is a chronic illness: there is no cure and it often greatly reduces what a person can do. The perception of those living with it, both of themselves and from others who are “well” can greatly improve or undermine the overall health of the individual, their quality of life, and what they can do in terms of meaningful activity due to the accommodations others - employers in particular - are willing to make due to how the severity of fibro can fluctuate. The benefits of analysis are that: a broader audience than sufferers and allies will understand that chronic illness is real, can affect all or most aspects of a person’s life, and that a person living with fibro can only improve their life as much as access to medical care - including what they can provide for themselves (think exercise, meditation, diet) will allow. Improving the perception of those living with fibro in the broader audience could reduce stigma and increase access to accommodations.

Purpose: I’ve had fibro since I was a teenager. I’ve experienced an absurd amount of stigma founded in ignorance. Due to the false beliefs of others, including family, co-workers, employers, and educators my education and career have been held back in numerous ways. Through interviews and other research, I aim to learn more about the prevalence of the false perceptions that I’ve experienced and to what extent others have been held back in their lives. From the results of my research, I hope that my audience will learn that: fibromyalgia is real, perceptions of it affect those living with it, the severity of it can fluctuate from day to day, quality of life and activity are determined by access to treatment (whether from a doctor or by going to yoga classes), and finally, limited as we may be, we are more than the illness we happen to live with.

Audience: My fellow classmates in ENG 105, Professor Tingle and his colleagues, and the wider ASU population who might view what I’ve written. ASU has a considerable number of students and educators who work in health-health-focused area like psychology, social work, nutrition, and nursing. I’m sure there are many individuals - students and educators alike - who have an academic interest in chronic illness, perhaps even fibro in particular. Many of my classmates likely know someone living with a chronic illness like fibro. Learning about how those of us living with it are perceived and how we perceive ourselves will, I hope, help create a more generous view of those living with chronic health issues. I’m uncertain about what may be new to someone reading my analysis. In responding to my initial topic post on the discussion board, one of my peers really seemed to enjoy learning about what a spoonie is. I’m aiming high and hoping that there’s something for everyone to learn!

Larger context: Learning about what defines fibro, what attribution biases are, how those biases apply to the biological and social models of disability, and how the non-spoonie and spoonie populations apply these models to chronically ill individuals will help my audience achieve a greater understanding of what fibro is, what it is to live with it, and how they can be allies. At stake is better quality of life for those living with fibro and non-chronically ill individuals gaining a more fact-founded perspective on chronic illness.

Venue: I’m using the Project 1 assignment as a starting point for an ebook to publish on amazon.com. about strategies for living with chronic illness to maximize quality of life.

Project 1 Research Plan

Fibromyalgia is a chronic health condition. Its cause is unknown, but its effects are. I have all the tender points - fourteen points on the body that are symmetrical about the midline (seven on the left in the same places as on the right); experience “fibro fog” (mental fog that impedes thinking); experience fluctuations in pain due to activity and weather changes (increases in humidity and sudden changes from hot to cold in particular); and experience many of the conditions that commonly occur with fibro (depression, chronic fatigue immune deficiency syndrome, and more). These diagnostic factors that I experience may be different from another person with fibro who might experience twelve of the tender points, mild depression, and an increase in symptoms only when it rains or after strenuous exercise. That is, there are as many experiences of fibro as their are individuals living with it.

Accessing treatment is essential to living with fibro in a way that maximizes quality of life while keeping symptoms, including those associated with co-occuring conditions, to a minimum. Opiates and opioids are still common treatments for fibro, despite their well-evidenced ineffectiveness and the dangerous and very common side effects. Other treatments include: talk therapy to manage side-effects and decreases in activities, especially in those who are newly diagnosed as well as to manage mental health conditions that co-occur; support groups; certain medications including pristiq, cymbalta, gabapentin, and more; interventional non-opioid treatment from a pain management specialist, which can include steroidal injections, lidocaine / bupivacaine injections, low dose naltrexone, and more. Treatments that an individual can do on her own include: making dietary changes, meditation, yoga, physical therapy, and more.

Project 1 Interview Questions and Findings

Questions about fibro, living with it, and the perception of those living with it

The questions I have about fibro are more related to the experience of others who live with it, how they perceive themselves in regard to fibro, and how the feel that they’re perceived by others. Some questions I’ll be asking my interview subjects include:

Have you been denied accommodations at work or at school because of fibro?

Has fibro interfered with your education / career / family life / personal development? To what extent?

Have medical professionals treated you as if fibro were a cop-out, not real, or purely psychosomatic? If so how did that make you feel?

What would you like those who don’t know about fibro, or much about it, to learn from your experience and what you’ve learned about fibro and managing it?

Has fibro made accessing treatment for other conditions more challenging? If so, how?

What non-traditional therapies have you found helpful, if any?

There are many more questions to ask, more of which will come up spontaneously in interviews.

Sources to consult

Beyond my own experience and what information I gather in interviews, I’ll be revisiting some fibro-centric websites, including one maintained by a friend in Tucson that focuses on the experience of men with fibro. I’ll also be investigating popular media to learn about what the perspective is there. If time allows, I’ll go to the University of Arizona and see what random individuals think about fibro.

Interview Findings

First Interview

My first interview subject was Moriah Weiner. I met her through the Meetup page for a fibromyalgia group in Tucson, Arizona where we both live. The interview was conducted by phone and recorded on another device with Moriah’s permission. I felt that there were far more similarities than differences between Moriah’s experience of chronic illness, and fibromyalgia in particular.

There wasn’t any new information about fibromyalgia for me, but there were differences in how Moriah experienced living with fibromyalgia. She’s ten years younger than me, and has a larger support network. We both have experienced many negative interactions that arose, for each of us, based on false perceptions and unsupportable beliefs about chronic illness and the individuals living with it. Some of those perceptions are that: 1) the health of the individual is determined by the individual; 2) pseudoscience and faith based explanations and cures; 3) the line “you’re not sick, you’re just lazy” and its variants, which seems be a common talking point on Fox News; 4) the assumption that, because a person is ill, that they brought it upon themselves due to misconduct; 5) denial of the reality of a specific condition - fibromyalgia or other - and the life experience that drives from that condition. These perceptions that Moriah has experienced confirmed the results of my ongoing informal experiment to see how chronic illness and fibromyalgia specifically are perceived. We differed in how we felt that these perceptions affected each of us. For Moriah, her experience was of being frustrated because of the above perceptions and beliefs. I asked how she dealt with how these perceptions filtered into her perception of herself, and she said that she didn’t have a good answer for that at the time. I offered to let her expand on that later via email or text or phone. She did say that she found talk therapy helpful, and that she regularly tried new approaches to managing her health issues.

Moriah explained that she’d had other major health issues prior to figuring out for herself that she had fibromyalgia. A professional diagnosis came years after. She believes those issues, PTSD and being diagnosed with cancer among them, helped to bring about fibromyalgia. Also, she said that having been diagnosed with cancer and living with PTSD put her in a mindset that “this was just another thing” which I very much identified with. We discussed how, in order to be open about living with fibro / chronic illness, that an effective approach was to ask the other person if they had any one in their life who’d experienced chronic illness or a major health event. If the other party was closed off to talking about that, or denied the reality of the condition or experience of that condition. This may be a beneficial approach to self-advocacy and advocating for the understanding of fibromyalgia and chronically illness generally, though more refinement is needed.

I feel that much of the information I’ve drawn from talking with Moriah could apply in my analysis on a number of points I’ll be discussing. Some of those points could be: 1) the invisible nature of fibromyalgia, and that what isn’t visible is perceived as less real and significant; 2) that explanations and cures based on pseudoscience and faith need to be considered in order to find effective approaches for self-advocacy; 3) that self-advocacy is a healthy approach to self-perception, wellness, and contesting false perceptions and pseudoscience / faith based talk.

Second Interview

My second interview subject was Patti Rink. Patti was diagnosed in the 1980s. We met through another meetup group. Like Moriah, myself, and many others living with fibro Patti has a number of co-existing conditions including cancer, PTSD, and major depression. According to Patti, and her account reflects the history of the condition, fibro wasn’t seen as a “real” condition. She said that others often said that she was “just lazy” or “didn’t want to work” in the build up to a formal diagnosis and after by family members, medical professionals, and family. At the time of her diagnosis Patti worked full time for a major aerospace firm in the secretary pool. She soon had to quit work and pursue disability, which she managed to get.

Individuals at government offices early on and since have regularly proved difficult to deal with. They simply didn’t believe that she was sick enough to be disabled. “But you don’t look sick” and “Are you really disabled?” are some of the things that Patti has heard at disability and other government offices. Asked whether the treatment she’s received from others - medical, governmental, and otherwise - has been better here in Tucson or in the Denver area, she said that treatment was much worse here overall. In her five months here, Patti has experienced three hostile medical professionals (primary care doctor, physical therapist, and a specialist doctor) and several hostile / unprofessional government workers. She says that the medical team she worked with in Denver were more considerate and less presumptuous, and that those relationships took some time to form. She said she experienced far less hostility in the Denver area during any length of time similar to her five month time in Tucson.

Patti nonetheless works hard to maintain a positive mindset and healthy interactions with others, regardless of how hostile / unprofessional they may be. Faith, reading the Bible and the study group she attends are all supports in this continual endeavor. She also makes use of regular exercise and is getting back into meditation. She also relies on traditional pain medication (oxycontin) and medical marijuana for pain management.

I asked what she felt might cause the differences she’s experienced here living here with fibro / chronic illness. She said that the Tucsonans she’s spoken with tend to be more ignorant / less educated and willing to operate on beliefs independent of facts or attempting to gather facts. When I read her the education and poverty statistics from my Project One rough draft, she said that what’s she’s experienced in Tucson made more sense. I followed up on this by asking how as she advocated for herself, how she advocates more broadly for those living with fibro / chronic illness, and what she would most like people to know about fibromyalgia. She said that she did her best to educate those in her life and those coming into her life about her health issues, fibro included. Also, she said that when she’s experienced outright hostility she chooses not to bother because the other party is operating from ignorance. Her immediate answer to what she’d most like everyone to know about fibro is that it’s real. There was no hesitation.

I feel that much of what Patti kindly shared, both her experience and her opinions on the perceptions of others about fibro / chronic illness will prove useful and vial to Projects One and Two as well as the ebook that will follow.

Infographic Discussion and Project 1 Feedback

Infographic Discussion 

I chose soft, warm colors to balance the seriousness of the topic, much like how the public advocacy advertisement I analyzed applied minimal text to a maximal image. The varied locations of the “100% percent” figure are intended to encourage the viewer to move between the panes of the design, which I hope persuades some viewers that fibro is real and that perceptions of it that are presumptuous can easily be harmful. Different contrasts between background, text, and text background serve the same function as putting the “100 percent” figure in different places on the page. Unlike the public advocacy ad analyzed, I chose a design that was flat. The PAA had depth to it and utilized that depth between the figure in the foreground and the stark background rhetorically. In the PAA I’ve designed, the surface is a flat one. I went with this choice partly because I couldn’t find a “fibro image” and partly because I wanted the graphic to be a bit confrontational. Having a three-dimensional space for the eye to wander around in would have been a much greater design challenge for my limited skills. Such a space would also distract from the directness and plainness of the text I wrote. The image in the upper righthand pane is of downtown Tucson, Arizona found on Google images and not subject to copyright. 

I used Adobe Spark to create my infographic, and the process was straight-forward because I’d used the website to design Facebook graphics for an open mic I once hosted in Tucson. Spark is online design program that’s free (with a premium option, of course) and offers abundant features for creating social media posts, posters, and more. I’ve found it enjoyable to learn, and it’s helped me translate my knack for organizing into the visual realm. Beyond the Adobe program, a knowledge of the principles of photography (symmetry, rule of thirds, contrast, and more) helped the most in my design process. 

About Feedback 

I’ve been very pleased to get so much helpful feedback, all of it considerate and thoughtful. Professor Tingle’s comments, along with those of Alexis, led me to re-examine my introduction, which I re-wrote so that it would cover the general content and purpose of my analysis. That re-write also helped me to better localize my subject matter and frame the discussion that follows. 

Citations have never been my strong suit. I find that odd because the purpose of citations is to provide support and clarity for the reader. I usually do a solid job of both. Maybe I should make my own citation manual! That my reviewers encouraged me to do a better job made a great difference, especially because the encouragement was framed within their reading of the overall project. Thank you! 

I’m also thankful that all my feedback was understanding about the interview / primary research issues in my Rough Draft. A final note: I’ve found that I have a lot to learn when it comes to working with Microsoft Word! 

Project 1 Rough Draft

Project 1 Final Draft