What to Tell People About Your Rare Disease, or Not

February 7, 2017

By Joan Friedlander

In a previous post, When Illness Messes with Your Promises, I briefly touched on the issue of communicating with people about your illness. Some rare diseases present obvious symptoms, making it more likely you’ll be asked about your condition. Others are “invisible” because the symptoms don’t manifest on the outside, making it potentially easier to be more discerning about who you tell. Either way, there will be times when it is both responsible and necessary to talk about how your disease impacts you, most notably with employers or professors, with new friends or with a new love interest.

It is hard to talk about something that you’d rather not, especially if you’re feeling unsure about how people will react, or simply prefer not to be identified with your illness. I certainly prefer not to talk about what it’s like to be in a Crohn’s flare, because… ew! But it’s become easier over time.

I find that the easiest way to take the emotion out of a potentially emotional situation is to ask factual questions. The following questions, adapted from “Business from Bed,” will help you decide what to say, and to whom.

How would you describe what you’re dealing with in the simplest terms possible?

To get things started, I answered this question as I would when asked about what it’s like to have Crohn’s Disease.

I have Crohn’s Disease, an intestinal illness, which symptoms come and go. When it goes into full-flare mode, I have to stay close to a bathroom. I’m often in a lot of pain and it’s like the very worst case of diarrhea you’ve ever experienced, except that it can last for days and weeks at a time.

I offer the following questions to help you craft your brief summary, and flesh out what else you might need to share with teachers, employers and/or social acquaintances.

  • How does your disease impact you at this moment in time?
  • Does it – or do the medical procedures and medications – impair your mental functioning?
  • Can you predict your energy and mood swings or do they vary from day-to-day?
  • Does it limit your time available for work tasks, or for school projects? If so, how?
  • Are you limited socially? If so, how?

Who Needs to Know and What Can You Say?

Make a list of the people who might need to know what you’re dealing with. Consider family and close friends, your work team, customers, business colleagues, friends and acquaintances. Take a few minutes to assess how the fluctuations in your energy and productive capacity might – or might not – have a direct impact on them, referring back to your responses to the previous set of questions. Next think about:

  • What are the potential risks of revealing the facts?
  • What is the potential upside or benefit of revealing the facts?
  • Is it okay if they offer to help, or would you like them to wait until you ask for it?
  • If you want them to treat you as they always have, how can you assure them that this is best and is really okay?

Prioritize Your Disclosure List

After answering the questions above, organize the people you identified into the following groups:

  • Must know
  • Would like them to know
  • Only if they ask
  • Never needs to know

The Decision to Share – Or Not

If you realize that there are people who need more information about your illness, there’s no need to rush out and tell everyone. Start with either your “must know” or “would like them to know” list, whichever feels easiest. If you notice a rise in fear or resistance as you think about communicating, pay attention. It might not be the right time, or you might want to ask someone to help you share this information. This is your life, you get to decide.

As you try different ways to talk about your rare disease, you will discover with whom, what and when these conversations go well, and when they don’t. This is a trial and error process, and life is a learning curve, so be kind to yourself and as gracious as you can with others.

If you’ve had some success talking about your illness in difficult situations, would you be willing to share with us in comments? What about mishaps? What didn’t go well and what did you learn from the experience?


Joan Friedlander is the author of “Business from Bed” and co-author of “Women, Work, and Autoimmune Disease.” Joan is an expert in working and living with chronic illness. Through her books and coaching, she helps career-oriented individuals design their work life to reflect current priorities so that they thrive professionally and personally. For more tips from Joan, visit (

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