Sharing Your Diagnosis with Others

Sharing Your Diagnosis with Others

Fast Facts

  • You and your rheumatologist 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.
  • You control what you tell others about your health, and you should talk about your rheumatic disease in a way that makes you feel comfortable.
  • Let others know that the outlook for treating these diseases is more positive than ever before.
  • New, powerful treatments are making it possible for many people to continue living full, active lives. They are continuing their careers, having families, and enjoying leisure activities.

Once you receive a diagnosis of a rheumatic disease, it is normal to experience different emotions. You may feel relief in finally knowing the cause of your symptoms, as well as uncertainty or concern about what the future may hold. In addition, you may wonder if and when it’s appropriate to share the news of your diagnosis with other people.

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. You can control what you tell others about your disease, and you should talk about it in a way that makes you feel comfortable. These are general suggestions for you to consider as you begin to share your diagnosis with people around you.

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.

Here are some suggestions for ways to talk about your diagnosis with family and friends:

  • Gather together the people closest to you for a meeting. In a clear way, share basic information about your diagnosis, including the name of your disease, possible symptoms and treatment to help them understand your diagnosis. You can also give them any brochures or other written information you have.
  • Reassure everyone that you and your rheumatologist (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. If you like, 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, going on vacations, or holding a backyard barbecue.
  • If you don’t feel comfortable talking in front of a group of people, tell your spouse or partner and immediate family members about your diagnosis one at a time. If you prefer, you can even send an email (or letter) with links to online information about your disease in case they have questions.

Setting Limits and Maintaining Control

You should decide what information you wish to share with people outside your inner circle of family and friends. This group of people may include acquaintances, neighbors, or service people like your hair stylist or grocery clerk.

Arthritis and related rheumatic diseases do not always have visible symptoms. However, you may feel fatigue or pain at times or struggle to do ordinary tasks like lifting household items or grasping keys.

People may not understand if you seem to have physical challenges or fatigue. Some people may even express skepticism that you truly have a medical condition since they can’t “see” your symptoms. In these cases, think about how you would like to respond.

Honesty is important. However, feel free to set boundaries on how much, when, and what you share. If you encounter someone regularly, perhaps prepare a short explanation of your diagnosis and what symptoms or challenges you may experience. For example, let your hair stylist know why you may find it painful to place your neck against the edge of the sink during a shampoo, and discuss other ways to accomplish this task. Let your neighbor know that sometimes, morning stiffness may make it difficult for you to drag your trash bins down the driveway for pick-up. If they offer to help, accept if you feel comfortable doing so.

People may ask questions about your disease that you don’t wish to answer. They may give you advice on treatments that you don’t wish to hear. In those cases, it is fine for you to thank them for their concern. You can clarify that you and your rheumatologist are working together to treat your disease. Share what you feel comfortable sharing, and feel free to discard unsolicited advice.

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. Before telling your supervisor or human resources director about your diagnosis, consider these suggestions:

  • 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, such as special equipment or even the right to take additional breaks. Employers are required to provide reasonable accommodations and in some cases, provide additional medical leave. Go to ada.gov/pubs/ada.htm to learn more.
  • Talk with your rheumatologist about how your diagnosis may affect your job. If your work involves physical labor or long hours of standing (such as retail sales or food service), your rheumatic disease may make this painful or tiring. Discuss what modifications you may need or if an evaluation by an occupational therapist might help to modify your work setting or arrangements. If you prefer, seek the occupational therapist evaluation first and bring suggestions to your supervisor meeting.
  • 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. Look online for your state’s vocational rehabilitation program and inquire about services or workplace evaluations by an occupational therapist.
  • 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. Think about what you will say before you go into the meeting, and stay positive. Let them know that you are seeing a rheumatologist and have a treatment plan for your condition.
  • 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. Follow through promptly.
  • Coworkers may speculate about why you are missing work all of a sudden or why you can’t perform certain tasks. If so, you may wish to give them basic information about your diagnosis. Let them know what symptoms or challenges you may experience at times. Educate others to put them at ease, and you may find that many people will offer their support.

Remember to share your diagnosis with others in your life in a way that feels most comfortable for you. Informing your friends and family will help them understand your disease and how they can best support you.

Updated May 2017 by Jillian Rose, LSCW 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.

© 2017 American College of Rheumatology