Life with Chronic Illness: Who to Tell, When, and How Much
You have been diagnosed with a chronic illness. Perhaps the diagnosis was months, or even years in the making. Tremendous relief at finding the answer is followed by a myriad of questions. One of the first is who should be told… and when… and how much.
This is an intensely personal decision, and one which should not be rushed.
Immediate family members who share a home with you… spouse, children, parents… should probably be told. They will be involved in the day-to-day issues as they arise and may be called upon to assist, or at least to provide emotional support.
Reactions to your diagnosis will be varied and unpredictable, even among those closest to you. Don’t assume that a flat, unemotional response means that they are not taking your situation seriously. Like you, they will need time to process the news and make their peace with it. You might find that some family members take the news very hard and you find yourself in the role of comforter. If that seems backwards or unfair, understand it for what it is — someone loves and cares very deeply about you. They will need time to adjust.
Be prepared to inform them of the basic facts, but encourage them to learn more on their own. You may want to provide them with a source for information specific to your condition. If you don’t plan on sharing the news with everyone, make it clear that you prefer they not discuss your health status with others.
Children will want to know if your life is in danger, if they are at risk themselves, and how their lives will be impacted. For young children, lengthy explanations may only confuse them, but they do need to hear the simple facts. Don’t underestimate their capacity for understanding and dealing with the truth. Let them know that they are free to ask questions as they come up.
There is no legal obligation to inform employers or co-workers about your medical status unless you plan to request special accommodations. Before making such a request, learn your rights under the Americans with Disabilities Act. If your work is not affected by your illness, use caution in sharing your diagnosis in the workplace. It is an unfortunate side effect of chronic illness, but other people’s perceptions of you may change.
You don’t have to share the status of your health with everyone you know. You should make that decision based on your individual circumstances. Keep in mind that with each person you tell, there is the possibility that it will be repeated.
If you plan on getting involved in patient advocacy, fundraising, or any type of online peer-to-peer networking, understand that there is no taking it back once your information is out there. Acquaintances and strangers alike will feel free to comment on your health and the health care choices you make.
If you are a very private person and wish to remain so, think long and hard about who you tell… when… and how much.
You have a chronic illness, but you are so much more than that.
Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a person living with multiple sclerosis, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. Follow on Twitter @AnnPietrangelo.