The Dilemma of Disclosing Chronic Illness

Source: Katie Willard Virant

Every day, multiple times a day, we make choices regarding how we present ourselves in the world. The clothes we wear, the way we style our hair, the manner in which we speak, the car we drive, the books we read, the address we call home — all of these are ways of expressing our life circumstances and preferences. Most of us are sophisticated in communicating identity cues. Since middle school, we’ve known that people do judge a book by its cover, and we’ve taken care to design our covers accordingly.

What happens, though, when revealing a central part of our identity feels vulnerable? When we live with chronic illness, what should we communicate about our experience? This post explores the disclosure dilemma faced by people living with chronic illness — the factors people evaluate when determining whether and how to disclose illness, the variability of contexts in which people disclose illness, and the benefits of analyzing our own illness disclosure decisions.

Illness Disclosure Factors

The decision to disclose or withhold information about one’s chronic illness can be framed as a risk/benefit analysis (Follmer, Sabat, & Siuta, 2020). We’re aware that revealing our chronic illness could have harmful or helpful consequences. We can’t control how others will respond to disclosure, and their responses could prove beneficial or disastrous.

The risks of chronic illness disclosure are both emotional and tangible. Will people view us as “less than”? Will they pull away from us? Will they believe us? Will they be disgusted by us? Will we lose opportunities for advancement at school and work? Will disclosure lead to stigma, rejection, and discrimination?

The benefits of chronic illness disclosure are also emotional and tangible: It is validating when others hold our identities in supportive ways. It is a relief to let go of the labor involved in concealment. Disclosure may be necessary in order to acquire accommodations we need to succeed at work or school.

Variable Contexts and Information Levels

Disclosure is “not a one-time event, but rather an ongoing process" (Woodgate et al, 2022). What do our families know about our chronic illness? Our friends? Our co-workers? Our employers? Will we sit in the subway seat designated for disabled people? Will we use mobility aids in public? Will we attempt to conceal symptoms from others or have a more open approach? Will we tell co-workers/friends/family that we’ve not been present because we were in the hospital, or will we evade and perhaps lie about the reason for our absence?

Not only are we navigating multiple contexts, but we also are navigating multiple levels of information. Our spouse probably knows more about the nuts and bolts of our illness than our mail carrier. We likely will be more comfortably open with a friend who asks, “What is it like living with your chronic illness?” than with a disgruntled stranger who asks, “Why did you park in that disabled spot when you don’t look disabled?”

Additionally, the level of information shared in a particular context may well change over time. Typically, as we grow closer to people, we tend to share more intimately. A new friend may simply know that we live with a chronic illness. A closer friend may know when we are experiencing a flareup. A best friend may be sitting with us during a flare, holding the actuality of our suffering as opposed to the idea of it.

Analysis of Disclosure Decisions

The complexity of chronic illness disclosure creates a continuum of positions. This means that we have choices regarding where we situate ourselves on this continuum. Some of us will be open about disclosure in multiple contexts; others will feel most comfortable keeping illness private from all but a few intimate friends. Some of us will want people to know all of the ins and outs of our illness experience; others will want even close friends to know only the fact of our illness without all of the details. There is no right or wrong way to disclose. Rather, the important question is: Are your illness disclosure decisions working for you?

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Communication and Chronic Illness

You can assess this by paying attention to your feelings. If you feel lonely in your illness identity, you may want to consider sharing more about your illness in contexts that feel comfortable. If you feel exposed, it may be helpful to think about contexts in which your openness is not being received in ways that feel supportive.

Of course, most of us feel some mixture of loneliness and exposure at varying times in our illness journeys. We risk disclosing our illness in order to alleviate loneliness, but sometimes our disclosure instead creates painful exposure. Alternatively, when we try to protect ourselves by concealing our illness identity, we may find ourselves feeling isolated behind our protective walls. And so we continually attempt to balance between disclosure and privacy, learning as we go what works and does not work for us.

Reflective Activity

1. Draw a straight line on a piece of paper. Label one end of the line “concealment/privacy” and the other “disclosure/openness." Place the various people/contexts in your life where they fit on the line. What feelings come up as you look at your completed line?
2. If you’re not satisfied with your line, what would you like it to look like?
3. What is preventing you from having your line reflect your preferences? This is a good opportunity to evaluate both your own beliefs about your illness and also the realities of your environment.
4. Take a few small steps toward changing your line. Are there contexts in which disclosure would make your life easier? Are there contexts in which disclosure is not serving you?
5. If you are comfortable doing so, discuss your process with a trusted friend for feedback.