Living with Chronic Pain

Tips for Coping With an Undiagnosed Health Condition


Dealing with a health condition that does not have an easily identifiable cause can be very frustrating. In some cases, it takes months or even years to obtain a proper diagnosis and receive appropriate treatment, especially when dealing with a rare health condition. Before receiving a proper diagnosis, numerous medical appointments, tests, and failed treatments become a way of life.

Here are some tips to cope with an undiagnosed condition:

  • Maintain both optimism and acceptance. Try to have a positive outlook that answers will become available with time, but also accept and look for ways to make the best of current circumstances. This can help with emotional well-being during the diagnostic process.
  • Trust symptoms and experiences. Remember that just because symptoms aren’t categorized into an identifiable illness or condition, it does not make them any less real.
  • Stay organized. Maintain thorough medical records, including test results, and make them available to all members of the medical team. Prepare for medical appointments by writing down questions and concerns ahead of time and bringing information such as current medications and supplements to the appointments. Consider taking notes during appointments in order to remember important information.
  • Practice self-care. Stay as physically and mentally healthy as possible by making self-care a priority. Eat healthy foods that nourish the body. Participate in physical activity, such as walking or yoga, whenever possible. Try meditation, journaling, or deep breathing exercises to help reduce stress.
  • Stay connected to others. Even if symptoms prevent participating in activities or getting together with friends and family in ways that were possible before the illness, look for different ways to stay connected. A support system is essential.
  • Reach out for support and information. Support groups specifically for individuals with undiagnosed or rare conditions are available. These groups can provide information and other resources. Check out groups like the National Organization for Rare Disorders or read “Becoming an Empowered Patient: A Toolkit for the Undiagnosed” for even more information, tips and resources about living with an undiagnosed health condition.
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