Who Should You Tell About Your Chronic Illness?

Woman with Half of Face ObscuredA while back, I worked with an adolescent who was diagnosed with diabetes. She and I often talked about disclosing her diagnosis with others; she revealed that she had told only one person and didn’t want her mother talking about it to anyone. One day, as she and her mother sat in the clinic waiting area, her mother chatted with another person. When I brought the girl into my office she exclaimed, “See what I mean? My mom is always telling everyone about my diabetes! I don’t want anyone to know, but she insists on telling everyone she meets!”

This is just one example of how different people are when it comes to sharing their experience with chronic illness. Some people don’t want anyone to know about their diagnosis, while others want to tell everyone. Most people probably fall somewhere between the two extremes.

In this case, the girl’s mother likely felt like she needed the support of others, so she talked more openly about her child’s diagnosis with strangers. Her daughter, though, wanted nothing more than to keep her status a secret.

If you’ve been diagnosed with a chronic illness, how do you handle this situation? Do you tell most people you meet about your situation or do you keep it to yourself? Whether you’ve been diagnosed with diabetes, arthritis, bipolar, HIV, or some other chronic condition, you’ve likely had to decide who to tell and when. This is one topic I discuss with people in therapy from time to time (especially when it comes to dating!): “At what point do I tell someone about my diagnosis?”

I like to think about relationships in the shape of a target, with you being the bull’s eye. The next circle out from you are those few people whom you trust implicitly. There might be just a couple of folks in this circle, like your partner, your parents, or a best friend. Moving outward, the next ring includes people you call friends. You spend time with them, but you may not tell them everything; your boss, coworkers, or extended family might fall into this category. And finally, the outer ring is made up of acquaintances, people you might meet just once or see on occasion.

This is just one example of how different people are when it comes to sharing their experience with chronic illness. Some people don’t want anyone to know about their diagnosis, while others want to tell everyone. Most people probably fall somewhere between the two extremes.

In my experience, the first ring of people—trusted family and friends—generally are informed about the diagnosis. That’s because they will likely be affected by your day-to-day appointments and treatments (medication, physical therapy, doctor appointments, etc.). The people in your inner circle are supportive and embrace you and your diagnosis.

One question that often comes up is: “Should I tell my employer?” If your diagnosis may require a change in schedule, accommodations, or time off, then talking to your boss or human resource department would be warranted. You might want to inform your coworkers of the basics of your diagnosis and how to help if there is an emergency. Again, this is a need-to-know basis; full disclosure is at your discretion.

Are you in the dating world? Think of first dates as people in the outer ring. You may or may not see them again, so use prudence when disclosing information about your health (and your personal history, for that matter!). Take time to get to know the person first. He or she should accept this diagnosis as part of your story … and if he or she doesn’t, then it’s simply not a good fit.

When you decide to disclose a chronic illness to others, it may be helpful to have some information handy. Make sure your material comes from a trusted and reputable source and not, say, “Joe’s Diabetes Blog.” Informing others about your chronic illness, and to what extent, is entirely up to you.

If you need some guidance and support, seek the help of a therapist. The more comfortable you feel about your condition, the more accepting others will likely be.

© Copyright 2015 GoodTherapy.org. All rights reserved. Permission to publish granted by Andrea M. Risi, LPC, therapist in Denver, Colorado

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

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  • Ellie

    Ellie

    April 15th, 2015 at 8:26 AM

    There is this very fine line with wanting others to know and then again not wanting it to seem like you are seeking out some kind of sympathy. I understand how some patients feel like this is their business and theirs alone and they want to handle it in their own way. On the other hand there are probably others who need a little more of a helping hand and would love to hear from others in terms how they have handled it and what it could mean long term. I think that it is best to know yourself, find people whom you can trust and as you feel more comfortable with disclosing, you can But until the it should be your choice.

  • Lou

    Lou

    April 15th, 2015 at 10:19 AM

    It seems like there are similarities in the way bi-polar and complex-PTSD symptoms manifest. What’s the difference between these 2 diagnoses?

  • fallon

    fallon

    April 15th, 2015 at 2:35 PM

    It’s yours… you own it… you tell anyone that you want

  • Gillian

    Gillian

    April 16th, 2015 at 5:25 AM

    You need to stay mindful that although this is always your choice, it could be a great opportunity for you to educate others about your disease and raise awareness of what it can do. This brings to the forefront of the medical discussion things like prevention and cures in many cases, and just could get the conversation started where before there may not have been one.
    This is not solely your responsibility, but it could be the chance to spread a wider understanding about your illness while leading thew way in educating others. That could be a good thing.

  • Andrea M. Risi, LPC

    Andrea M. Risi, LPC

    April 16th, 2015 at 8:57 AM

    As Ellie stated, it is so important to “know yourself”…to work through your own feelings about your diagnosis. When you are comfortable with your condition, then others will be too.

  • Andrea M. Risi, LPC

    Andrea M. Risi, LPC

    April 16th, 2015 at 9:01 AM

    Great question, Lou! It is difficult to tease out the differential diagnosis between Bipolar Disorder and PTSD, as they share similar symptoms. I believe you will find some helpful resources regarding both diagnoses here on GoodTherapy.org.

  • Libba

    Libba

    April 16th, 2015 at 12:10 PM

    It can also be helpful to forge a bond with your provider.

    This will be an excellent resource for materials and suggestions as to how you can make living with this illness more bearable over the long term.

  • Andrea M. Risi, LPC

    Andrea M. Risi, LPC

    April 16th, 2015 at 2:02 PM

    Fallon, Gillian and Libba – I agree that teaming up with your providers to be able to educate others is a winning suggestion that will help you own your diagnosis in the process!

  • Kim

    Kim

    April 16th, 2015 at 4:53 PM

    Ii have multiple chronic diagnoses. I only tell people on a need to know basis. I do wear a medic alert bracelet and carry emergency info and a list of medications I take.

  • blake

    blake

    April 17th, 2015 at 5:01 AM

    although illegal you know that there are people in certain jobs who have this fear of sharing with their bosses what is happening because they are afraid that it could then mean that they lose their jobs.

  • Jade

    Jade

    April 18th, 2015 at 7:30 AM

    You have to at least let your immediate family members know.

  • Andrea M. Risi, LPC

    Andrea M. Risi, LPC

    April 18th, 2015 at 2:19 PM

    Kim and Jade – I appreciate your perspectives!

    Blake brings up a good point regarding the legal aspects of disclosure in the workplace. Let’s hope that our educating others of chronic continues to enlighten those who see it as a reason to dismiss people from employment.

  • Alexis

    Alexis

    April 20th, 2015 at 3:33 PM

    There was probably a time in my life when I would have thought that I didn’t have to disclose to anyone, that this was my business and that was that. I think that as I have gotten a little older I have take on a different point of view in that I think that you should at least have the courtesy to tell the others in your life whom it will directly impact. if it affects no one but you, then I think that it is perfectly fine to keep it to yourself; however if it is something that another will have to help you out with or it will in some way impact them then you at least owe it to them to let them know what is going on. It doesn’t have to be the whole story if you don’t want it to be, but enough for them to have some insight into what could be happening.

  • marcus t

    marcus t

    April 21st, 2015 at 3:55 AM

    The one thing that I think that many parents try to do is keep the information from their kids, not to be secretive but just in the hope that this will shield them from some of the pain.
    But I think that most kids would want to know what was going on, even if you don’t want to give them all the details, they at least deserve to know the basics.

  • Andrea M. Risi, LPC

    Andrea M. Risi, LPC

    April 21st, 2015 at 8:24 AM

    Thank you for sharing your experience with disclosing chronic illness, Alexis! It seems that as you matured both emotionally and in the illness itself, you found more benefits to sharing it with others. Everyone has their own journey…

  • Andrea M. Risi, LPC

    Andrea M. Risi, LPC

    April 22nd, 2015 at 8:25 AM

    Marcus – you bring up a good point! Sometimes parents shelter their children from the reality of their chronic illness. However, most children want to know what’s going on with their parents. I would suggest offering age appropriate information about the diagnosis and treatment to the children.

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