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The best care starts with the best information
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.
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:
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.
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:
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
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