Sharing Your Diagnosis with Others

Fast Facts:

• You and your rheumatology provider will work together to develop a plan to manage your rheumatic disease.
• You should only share your diagnosis with other people when you are ready to do so. Your health status is a private matter, and you get to choose when and how you discuss the matter with others.

Sharing with Your Family and Close Friends

It is likely that the people closest to you, such as your spouse or partner, family, and close friends know that you have been experiencing unexplained symptoms. It is important to let these people know about your diagnosis so they can provide support as you cope and follow your new treatment plan.

Share basic information about your diagnosis, including the symptoms and treatments available to help them understand your diagnosis. Use any brochures or other written information you have.

Reassure everyone that you and your rheumatology provider (and other doctors) are working together to create a treatment plan to best manage your symptoms and overall condition so you can live a fulfilling, enjoyable life. You can talk about challenges you may have doing certain tasks or activities and what help you may need from them at times.

If you have young children, explain that you may have to give yourself shots or take pills to help treat your symptoms and help you feel better. Let them know that you should be able to continue to do many enjoyable activities with them in the future, such as playing games, watching them play sports, or going on vacations.

At Your Workplace

You may wish to inform your employer about your diagnosis, as your rheumatic disease may mean that you will have to miss work time for medical appointments or illness.

Talk with your rheumatology provider about how your diagnosis may affect your job. Discuss what modifications you may need or if an evaluation by an occupational therapist might help to modify your work setting or arrangements.

Find out if you need a letter or documentation from your rheumatologist (or occupational therapist) to give to your employer in order to get special modifications or other benefits at work.

Learn as much as you can about your rights as an employee. The Americans with Disabilities Act and other laws are designed to protect workers who may need modifications to do their jobs. Each state has vocational rehabilitation programs that are designed to help people with disabilities (such as a rheumatic disease) continue to work and maintain gainful employment.

Meet privately with your supervisor and/or your human resources director to discuss your diagnosis. Bring information about your disease so they understand what symptoms or challenges you may experience.

Updated April 2023 by Kristen Lee, MD, and reviewed by the American College of Rheumatology Communications and Marketing Committee.

This patient fact sheet is provided for general education only. Individuals should consult a qualified health care provider for professional medical advice, diagnosis and treatment of a medical or health condition.