How to Tell Someone You Have a Chronic Illness
Receiving a chronic illness diagnosis can be a profound and life-altering experience. Whether it’s a condition like Crohn’s disease, diabetes, or cancer, you might be feeling a mix of emotions—from fear and uncertainty to relief at finally having answers.
Deciding how much to share and with whom can be challenging, especially when you’re still processing the news yourself. The most important thing to remember is that it’s your body and your journey. You have control over when, whether, and how to tell someone you have a chronic illness.
Here, read about five tips to help you share the news.
1. Determine how much information you’re comfortable sharing
When it comes to your diagnosis, you get to decide how much or how little to share. You don’t owe anyone an explanation, and you’re empowered to be the gatekeeper of your own story.
The detail you share will likely depend on how close you feel to each person and whether your illness could impact your time with them. It also depends on how much emotional energy you have.
Some people feel comfortable sharing each detail, from appointment outcomes to daily struggles, while others prefer to keep these things private. All approaches are valid.
Think about your boundaries. If you’re not comfortable answering certain questions, don’t. Say, “I appreciate your concern, but I am not comfortable talking about that.” It may also be helpful to develop stock phrases to use with acquaintances or others who ask how you are. For instance, “I’ve felt better, but I’ll be okay” is honest but still avoids getting into details.
2. Think about how you’d prefer to share the news
Deciding how to deliver the news is just as important as what you say. Each method has its pros and cons, and the choice ultimately depends on what feels most comfortable for you.
In-person: Allows for personal connection and immediate support, but can be emotionally draining.
Over the phone: Provides a balance of connection and distance, but can be difficult if emotions run high.
Text or email: Gives you control over what you say and allows the other person time to process, but might feel impersonal.
Social media or other public announcement: Lets you spread the information to your community quickly, but may include a wider audience than you’d like (like an acquaintance whom you went to school with years ago).
If you prefer to share your news with a larger group or update people regularly, starting a CaringBridge can be an invaluable tool. This no-cost online health platform allows you to create a private, secure page where you can share updates and ask for support.
You can adjust the settings so that it can be public or a private page for just your inner circle. You can also request practical support, like grocery shopping or childcare, which is helpful when you’re feeling particularly unwell.
CaringBridge allows you to keep everyone informed without repeating your story, which can be time-consuming and exhausting. It also provides a space to vent, ask for affirmations or prayers, and even link to fundraising pages like GoFundMe. After announcing your diagnosis, you can maintain ongoing communication on your terms.
3. Anticipate the questions that they may have
When you share your diagnosis, it’s likely that people will have questions. Some of these questions might be expected, like “How are you feeling?” or “What does this mean for your daily life?” Others might catch you off guard, such as questions about treatment options or future plans, or questions or comments that seem critical of your decisions.
While these questions often come from a place of care, they can feel overwhelming or intrusive. Preparing yourself can help you feel more in control of the conversation. You don’t need to have all the answers. It’s okay to say, “I’m still figuring things out,” or “I don’t have all the details yet.”
Setting boundaries around what you’re willing to discuss can help manage the conversation. If someone asks something too personal, respond with, “I’m focusing on one step at a time, so I’d prefer not to dive into those details.” This approach acknowledges their concern without sharing more than you’re comfortable with.
4. Explain to them what a helpful reaction would look like
Not everyone knows how to respond to serious news in a supportive way. And what feels supportive to you may feel unhelpful to others. By guiding your loved ones on how to react, you can help set your desired tone for the conversation.
Ask yourself the following questions:
Would you appreciate an in-depth conversation about your diagnosis or would you prefer to keep it short?
What questions are okay?
When you share the news, try to be clear in your expectations. You might say, “It helps me when people stay positive,” or “I’d appreciate it if we could stay realistic about how this affects daily life.” You could also describe the types of questions you’re comfortable with, like “At this time, I don’t want to share my specific symptoms or my treatment plan.”
If you’re open to people asking questions, clarify that they may ask about your condition and the future are okay but that you will not tolerate questions about the validity of the diagnosis or severity of your symptoms. If you have any other off-limits questions, explain that.
Communicating your preferences can also prevent well-meaning but unhelpful responses, like unsolicited advice or comparisons to other people’s experiences. Redirect these conversations by saying, “I’m not looking for advice right now—just someone to listen.” This helps keep the focus on what you need.
5. Provide ways that they can support you
People often offer (unsolicited) advice because they want to help. If that’s the case, you can redirect that energy into tasks that you will find helpful.
One of the best ways to do this is to give them clear guidance on how they can support you. This could be practical help, like running errands or providing meals. It can also include emotional support, like checking in regularly or simply being there to listen.
Once you’re more familiar with how your chronic illness affects you, you can ask for ongoing help. For example, if you know you’ll have frequent doctor visits, ask a friend to drive you to appointments once a week or to help pick up your kids those days.
Providing these suggestions not only helps you get the support you need but also gives your loved ones ways to feel helpful and connected as you navigate living with your illness.
What to expect when you tell someone about your chronic illness
Everyone reacts differently to news of a chronic illness. Some people may respond with kindness and compassion, while others might seem unsure of what to say. You could encounter a mix of supportive, neutral, or emotionally charged reactions. Some people may offer advice, share their own stories, or ask invasive questions.
While these reactions are often well-intentioned, they can be difficult to handle, especially if you’re still learning about your diagnosis. That’s why explaining what a helpful reaction looks like can make a big difference. It helps guide the conversation and directs their energy into tasks that are actually useful and helpful.
Remember, their reaction is not a reflection of you or your journey. People process information differently, and their responses are often influenced by their own fears, experiences and misunderstandings.
What advice would you share?
Determining how to tell someone you have a chronic illness is never easy, but you have the right to do it on your own terms. Take control of these conversations in a way that feels empowering for you.
What has helped you so far when sharing your diagnosis with others? Have you found certain approaches or tips that made the process easier? We’d love to hear your stories and advice in the comments below. Your insights could provide comfort and guidance to someone else navigating a similar path.