As an aspiring mental health professional and a person living with invisible illnesses, exploring the stigma surrounding invisible illnesses is incredibly important to me. With that in mind, I chose that topic for a PhotoVoice project in one of my MSW courses.

Each person pictured here volunteered to model for a photo in which they obscure their face in some way. Due to the nature of invisible illnesses (ie: not readily seen), the idea was to highlight the difference between what is seen by the viewer in the portrait and what actually exists. In addition, people living with invisible illnesses regularly face the often fraught decision of whether or not to disclose their illness to others, such as a prospective employer or new partner. When they choose not to disclose, the person living with an invisible illness is intentionally obscuring the way they are perceived, yet when they choose to disclose, they risk being viewed differently by others.

What Not to Say

This disconnect between reality and perception leads to the stigmatization of an individual who is living with invisible illness. In our empirical-evidence based society, there is pressure to “see it to believe it.” The fact that invisible illnesses are not immediately detectable can lead to skepticism or flat-out disbelief that the illness exists at all.

To the left is a non-exhaustive list of some of the frustrating responses people without an invisible illness sometimes give when they encounter a person with an illness.

I put the question “What ill-informed responses have you encountered regarding your invisible illness?” out to social media. Responses included:

• You’re so skinny - what’s your secret?

• Just don’t be so anxious!

• Others have it way worse. Don’t be so sad.

  • Most people I know with chronic or invisible illnesses already struggle with self-stigma and comparisons. We know others have it worse, while others have it better, and we’re all just trying to get through and cope as best we can.

• Are you stupid? (to someone with ADHD)

• I just saw you doing (thing you’re now saying you can’t do).

• You’re too young to have health problems!

• Why don’t you just get over it?

• You’ve got lots going for you. What reason do you have to be depressed?

  • Depression doesn’t necessarily come from good or bad things happening to you. Those circumstances may exacerbate or improve depression, but depression isn’t dependent on them. In addition, people can be depressed and still be very grateful for all they have in their life.

• Try yoga.

  • A big rule with invisible illness - and in general - is to not offer prescriptive advice. If someone does not ask you for advice on their physical or mental illness, do not offer any! I realize this usually comes from a place of trying to be helpful, but it belittles the person you’re talking to. You’re not trusting that they’ve tried it already, that they’re doing what they can to fix it, that they’ve spent money, time, and energy seeking an answer. It’s a way of blaming someone for the situation they’re in. It also implies that they can fix the issue, which may not be the case. If you absolutely have to say something, ask first whether the individual wants advice. If they say no, respect it completely.

• You’re too sensitive.

  • A good question to ask yourself is: Is the person being too sensitive, or are you what Erving Goffman describes as an “unsensitized other”? Sensitivity is highly subjective, and you’re own definition of sensitive may come across as insensitive to others.

I’m guilty of saying many of the things on this list. This isn’t meant to shame or bash anyone. The purpose of this post is to spread awareness that there are helpful and harmful ways to talk to people living with chronic invisible illness.

In addition, the nature of progress dictates that in a few years, what is “okay” or supportive to say will change. It’s a moving target, and no one is perfect at being an ally. Cut yourself and others some slack, and do your best. If you’re not sure what to say to someone with an invisible illness, a lot can be gained by approaching them with respectful curiosity, an open mind, trust, and support. You can find some decent examples here.

If you’re super interested in this topic and want to learn more, here are two papers (paper 1, paper 2) and a speech I wrote this year on the topic (hopefully they’ll be adapted to be blog-friendly someday!). I recommend checking out the sources in the papers for peer-reviewed studies and articles! These are a bit dry and limited due to page and topic requirements, but hopefully they provide some insight.

What About You?

Do you live with an invisible illness? What well-intended-but-heinously-dismissing responses have you received in response to your illness? What have people said that has been helpful or positive for you? Comment below to share.