Talking to Others about your Disease

Once you’ve had some time to adjust to your diagnosis, you’ll probably start to consider when and how to share information about your disease with others. These individuals might include close friends, family members, employers, or even a child.

Deciding with whom to share the news – and how much to tell – can be one of the most difficult aspects of dealing with a new diagnosis. The information you share about your disease is a highly personal decision.

There is no right or wrong approach to how much, or with whom, you choose to share.

Whom to Tell is Up to You.

Some people with rare diseases have obvious symptoms, making it more likely they will be asked about their condition. For others, symptoms are not as visible, which makes it easier to be more selective about whom to tell. A general guideline is that many people reveal their diagnosis to others only if it seems important to their relationship.

In some cases, it may be necessary to talk about how your disease impacts you with people other than close friends or family members. These individuals might include employers, teachers, or professors. In K-12 educational settings, a 504 plan or an Individual Education Plan (IEP) provides learning accommodations to people with special needs, including those with chronic disease or serious illness, under the Individuals with Disabilities Education Act.

You are in control of the information you share.

When you decide to share your diagnosis with others, or the diagnosis of a family member who has given specific consent, you may only want to share in a limited way.

For example, you might only discuss your most common symptom and how it impacts your daily activities. Other times, you may choose to talk to someone with whom you can share more details.

These details might include the potential challenges that go along with the diagnosis. It is important to remember that you know your story best, and you are in control of what you want to share.

Get advice from professionals.

You may find it helpful to talk to a licensed professional counselor, disability attorney, genetic counselor, or your doctor to get advice and guidance about what information to share about your diagnosis and with whom.

A licensed professional counselor or a genetic counselor can also provide valuable insight and suggestions about how and when to tell children about their own rare disease diagnosis or that of a parent, sibling, or other family member.