Making Invisible Entities Visible

Negotiating Disclosure of Invisible Chronic Conditions in the Workplace.

Kaush Ganesh
May 27, 2020 · 5 min read

Health disclosure in the workplace is complicated, especially for people with invisible chronic conditions. Invisible chronic conditions, such as migraine and fibromyalgia, limit one’s activities and functions, but these symptoms are not visible from the outside. Joint and muscle pain, fatigue, and severe headaches are some of the symptoms that can present in the daily life of a person with invisible chronic conditions. Due to the lack of observable symptoms, people tend to find it challenging to communicate their pain and symptoms to others. How might we design technology to help people with invisible chronic conditions negotiate disclosure of their condition in the workplace?

To understand this problem space better, I conducted a two-phase study to better understand the problems faced by working adults and the subsequent strategies used to conceal or disclose their invisible condition at work. Through a qualitative analysis of Reddit forums, creation of design concepts, and interviews, this study contributes understandings of disclosure that should be taken into account in future design efforts in HCI.

Why Migraine and Fibromyalgia?

This study focused on two common invisible chronic conditions, migraine and fibromyalgia.

Migraine and fibromyalgia are interesting to study together as they represent two ends of a medical spectrum. Migraine is considered a neurological condition that affects nearly 39 million Americans. Fibromyalgia is viewed as a “mysterious label” despite being a clinical syndrome since the 1970s. People tend to have their symptoms invalidated even by medical professionals because there are no clinical tests available to diagnose fibromyalgia.

Study Design

I explored how employees with invisible chronic conditions navigated disclosure through a two-phase study.

The first phase involved qualitative data analysis of Reddit forums. I explored the work done by employees to manage their invisible chronic condition under the following circumstances:

  1. by keeping their invisible condition concealed,
  2. through informal disclosure among people at work, and
  3. through formal disclosure that involves laws and official paperwork.

By highlighting the different kinds of settings and strategies that individuals employ, the goal of this study was to introduce a design research opportunity in HCI for a population living and working with invisible conditions. In the second phase, design concepts were generated based on the learning of the first phase. In this article, I focus on the strategies used by people to keep their invisible conditions concealed in the workplace.

Findings: Concealment of the Invisible Condition

The overarching theme of our findings was that disclosure is not a simple, one-time conversation, nor is concealment an easy route without adequate access to manage chronic pain privately.

Qualitative data analysis of the subreddits of migraine and fibromyalgia revealed a dilemma of disclosure: even though disclosure was considered necessary by some, others chose to conceal their invisible chronic conditions at work.

The advantage of disclosing to the upper management is that employees with invisible conditions can be legally protected from discrimination or termination through labor laws such as the Family and Medical Leave Act of 1993 (FMLA) and Americans with Disabilities Act of 1990 (ADA). However, merely requesting protection resulted in negative consequences like termination for some Redditors (username anonymized in quotes below).

“…Filed [legal] paperwork, got chosen for a “random” drug test, then 2 days later fired. I should have hired a lawyer” — < ekp5urd>

Therefore, avoiding disclosure (i.e., by not submitting paperwork) was the easier choice for some people. What felt challenging in such cases was the concealment of pain and symptoms from coworkers and supervisors. I found three strategies used by people to conceal their invisible conditions at work.

  • Keeping it Together at Work. People chose to ignore their symptoms and avoided taking care of themselves while at work, with aftereffects of dealing with this in their own time.
  • Hiding Symptom Management Techniques. By using inconspicuous resources like high protein snacks, a pillow for the chair, or a warm sweater, people found ways to make themselves comfortable without drawing attention to their health at work.
  • Obfuscating the Real Deal (Symptoms). If the symptoms became impossible to conceal, people found ways to explain away their pain, while hiding the real source of it. For instance, a Redditor <ephv8y7> talked about using the excuse “my back is hurting” if and when “I’m visibly hurting or moving slow.”

To refine my understanding of disclosure and concealment in the workplace, I generated five technological design concepts in the second phase of this study. One of those concepts is called “Reverse FilterFace”, and it facilitates adequate concealment of the invisible condition at work.

Design Concept: Reverse FilterFace

Reverse FilterFace is a design concept that creates a “filter” to hide the visible impact of migraine and fibromyalgia in people’s appearances, such as “bags under the eyes” or “buggy eyes” (descriptions used on Reddit). This idea was motivated by the strategies used to hide symptom management techniques in Phase 1. Reverse FilterFace is viable using augmented reality technology to improve people’s facial features. The storyboard below was used to demonstrate this concept. I asked interview participants to imagine themselves as the protagonist of the story.

They were invited to share anecdotes from their life when they felt the need to hide their symptoms and how they managed to succeed in doing so. The situational application of this concept became apparent in this phase. Even those who actively supported full disclosure at work found that there were stakeholders (clients, vendors, etc.) from whom they would hide their invisible condition. One participant even described FilterFace as a “short-term disguise” to keep it together and “get through meetings without questions”.

This study highlighted various factors in the workplace that can mitigate or exacerbate chronic pain in people with invisible conditions, and how people negotiate the disclosure of their invisible condition at work. Through the use of technology as an intervention at work, I believe that the designs generated for this study can be extended to apply for various user populations within the primary target audience of working adults with invisible conditions.

If you would like to read more about this work, my thesis can be found in the University of Maryland Libraries: Making Invisible Entities Visible.

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