Letting your loved ones know about your symptoms, triggers, and boundaries can help them better support you — and help you feel less alone.
When you’re diagnosed with a chronic illness, it can feel like a big step to tell people about it. While it’s not easy, letting loved ones know about your condition may help you foster better connections. Having people to understand, support, and accommodate your needs can help you feel less alone.
It took me years to open up to my loved ones about my chronic illnesses. I feared being judged or seen as a less capable friend. I imagined that people would start seeing me only as “the sick one.”
As time passed, I realized it was better to tell people about my health. If they’re understanding, then we’ve developed a more meaningful connection, and if they’re not, then the relationship may not be worth pursuing.
Here are my tips for talking about your health with your loved ones.
I find it useful to simplify the medical jargon by answering two questions: Why does it happen, and what does it cause?
For example, to explain IBD, I might say, “I have an autoimmune disease called IBD where my immune system attacks my digestive tract. It gives me symptoms like stomach pain, cramps, weight loss, loss of appetite, diarrhea, and bleeding.”
Sticking to a formula like this can help you explain your conditions easily.
It can be hard, time-consuming, and exhausting to talk about your condition over and over again. Websites and charity organizations are designed to explain aspects of your illness in ways that are easy to digest and often quick to read. Advocacy pages can also provide an in-depth look at the stigmas surrounding your condition.
Sending these links to friends and family can provide a convenient way for them read up about your condition in their spare time.
Telling your loved ones about your triggers can help them accommodate you in situations where you may feel unwell. For example, if you explain that certain foods trigger your symptoms, your friends and family will likely be more inclined to help you avoid them.
Let them know that your condition isn’t curable and that you may feel worse or better at times.
It can help you avoid the question, “Are better yet?” It can also allow your friends and family to understand the unpredictability of your condition and that if you cancel a plan based on how you’re feeling, it’s not your fault.
Many of your friends and family will probably ask how they can help you. Clearly explaining how they can do so will help you create a better support system. You may want them to research your condition, learn about ableism, or simply check in during flare-ups. Let them know.
These conversations are certainly difficult and require more energy, but they can be really rewarding if the person is willing to listen and learn.
For example, if your friend puts pressure on you to get better or gives you unsolicited advice, explain why that’s not useful and how it implies that your condition is easily fixed. Some people may not be receptive, but often it helps your loved ones learn how to support you.
After telling someone about your condition, they may want to ask you questions. Setting boundaries at the start of the conversation can facilitate a fulfilling discussion that doesn’t make anyone uncomfortable.
For example, you might start the conversation by saying, “You can ask any questions you like,” or “You can ask any questions you like except for questions about my medication.” You may instead say, “I’m going to tell you about my condition because I want you to know, but I’m not very comfortable talking about it, so please don’t ask me any other questions for now.”
Your boundaries may change depending on who you’re talking with. Set whatever boundaries make you feel comfortable.
Unfortunately, not everyone in your life will be receptive, understanding, or open-minded. They may question, doubt, or refuse to listen to you because they find conversations about your condition difficult.
Where you can detach yourself from these people you should, but that’s not always an option for everyone.
If they’re not receptive, you can attempt to use the strategies above to explain why certain things are stigmatizing or hurtful. You can explain the reality of your situation and direct them to resources about your condition and ableism.
If someone continues to invalidate you, it’s not your fault. You may find it’s not worth your energy or mental health to change their mind when it’s fixed.
It’s important to remember that you don’t have to fit everything you want to talk about into one conversation. Pacing these discussions over time may be important for your mental health. Plus, as chronic illnesses consistently shift and change, the need for new conversations may arise down the line.
Disclosing your diagnosis to your loved ones can feel daunting, but the benefits can be immense. Feeling supported and heard can do wonders for your mental and physical health. Approach these conversations how and when it’s best for you.
Fact checked on December 21, 2022
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