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Biographical disruption: When a chronic illness diagnosis changes you forever

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Heidi’s main fear was just realized; the doctor has informed her that — without a doubt — she has rheumatoid arthritis (RA). Gone is the hope that this wasn’t a serious disease, that she’d just pushed herself too hard, working and keeping up with the kids while training for another half-marathon.

Over the past three months, she has slowly accumulated pain. First nagging and distant, now screaming and ever present like a fire moving through her body. Although there are treatments that can help her, she realizes this will be a lifelong condition. She will need to start medication and a whole new regimen of self-care. Although there’s some level of relief to have the source of her pain identified, her mind is completely overwhelmed with what her new life may look like — one that seems completely unrecognizable from her life so far.

Chronic illness fundamentally disrupts identity.

Three months ago, Heidi’s identity for herself was an active half-marathoner and busy mother, focused on keeping up with her family and her work. Today, she is unable to recognize that version of herself in the body lying on the couch and in too much pain to do the dishes.

In the research world, this is called “biographical disruption.” This is a period of grief and struggle that occurs when chronic illness is first diagnosed or worsens. The physical changes and new self-care routines required for chronic illness disrupt a person’s sense of self, social roles and normal activities. These changes are usually abrupt, and it takes time for a person to successfully cope.

A new chronic illness diagnosis can be overwhelming, particularly if it feels like the old you and the new you don’t match up. However, it doesn’t have to be a time of hopelessness. With the right support and strategies, you may find that you are more resilient than you thought.

Based on research, here are three key actions you can take during this challenging time:

  • Stay hopeful about the future — The beginning of a new diagnosis or a flare of an existing diagnosis is a poor representation of what future life may look like. While there is no guarantee of a complete remission of symptoms, there is often improvement. It may feel impossible early in a chronic illness journey to get back a full life, but it’s common to normalize what feels very abnormal in the beginning. Many thrive despite the challenges of chronic illness.
  • Surround yourself with support — Other people have walked a similar road before you. Finding people who have the same condition and may even be at similar points in their health journeys can help you understand what is possible in the future. For example, Heidi might benefit from community with other mothers living with RA. In addition to people in your own social circle, Mayo Clinic Connect is a great example of a digital platform to connect with patients from all over the world who may have insights into living well with chronic illness. There are numerous other condition-specific online support communities as well.
  • Take baby steps — Focus on one adaptation at a time and start with the one you feel will help the most. At the beginning of a diagnosis, patients are often presented with an enormous amount of information explaining the condition and how to manage it. Not being able to take it all on at once can leave you feeling overwhelmed or discouraged. By focusing on one new strategy at a time — for example, learning to get an adequate amount of rest with a new condition — you get to feel the success of making something new work for you in addition to any treatment benefits. The combination can be the fuel you need to take on the next step.

Kasey R. Boehmer, Ph.D., M.P.H., NBC-HWC

Dr. Boehmer is an assistant professor of health services research and a board certified health and wellness coach at the Mayo Clinic in Rochester, Minnesota, where she lives with her husband and two sons. She serves as the director for the Mayo Clinic Minimally Disruptive Medicine Program and directs its annual Care that Fits Conference. Her primary research interests include patient-centered care and communication techniques to understand and support the capacity of patients with multiple chronic conditions and their caregivers. Follow her on Twitter @krboehmer or on Instagram @kaseyrebekah.

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