Life After Being Diagnosed with a Chronic Condition 

When you’re sick, you’ll do anything you can to get better.

To get the right treatment doctors need to identify the cause. Usually, it’s great news when they do. A diagnosis is a tool. There’s something to blame, address, and treat.

But what if the condition is chronic? Multiple sclerosis, long covid, depression, fatigue, heart disease, and allergies are just a few conditions that can be treated by doctors, even if it means that treatment may not cure them.

“A clearly stated diagnosis—or at least some possible diagnoses—can help doctor and patient think together and make shared decisions,” says internist Rita Charon, MD.

Pediatrician David Buchholz, MD, agrees, and adds, “A diagnosis can help a patient choose how to live their life.”

Sometimes, however, a diagnosis can feel like a label. This is particularly true when it comes to rare and/or chronic conditions. Drs. Buchholz and Charon spoke to us about the good and bad of diagnostic labels, and how they impact patients. They acknowledged that receiving a diagnosis can have a complicated impact on a patient’s mental and physical health.

What is the Benefit of Having a Diagnosis? 

David Buchholz, MD: A diagnosis is important when it changes the treatment, prognosis, and/or the personal, emotional, and environmental response to an illness.

COVID-19 is a great example of a diagnosis having significant impact on care. A 65-year-old, generally healthy person with a mild upper respiratory infection and no fatigue nor fever might choose to continue to go to work. The infection will go away in 3 to 14 days, without any long-term risks, and the person might take over-the-counter medications to treat symptoms. That same person positive for SARS-CoV-2 virus needs to isolate for five days, might take an antiviral medication (Paxlovid), and is at risk of developing long-COVID symptoms.

Rita Charon, MD: A diagnosis can help a health care professional and a patient think together and make shared decisions. I’m reminded of a patient with abdominal pain that mimicked her father’s terminal illness. I had to gently suggest that there may be emotional and grieving dimensions of her symptoms and that we should investigate further to come to a diagnosis. It’s not always what a person wants, but it can be vital to their health.

When Does Having a Diagnosis Work Best? 

DB: We still have a lot to learn, and it is not always possible to make a definitive diagnosis. As a result, people may seek multiple opinions and a variety of tests and studies, which might have risks or are harmful physically, mentally, or financially. A diagnosis is best when there are options for care and the patient and healthcare provider make decisions together about treatment, based on the patient’s individual preferences, beliefs, and values.

RC: It’s helpful for a doctor and patient to get on the same page early on, and for both to understand that it may not be easy to immediately determine the cause of the disease. For example, I worked with a young man and medical specialists for months until his rare disease, presenting as strange body pain, was diagnosed. At that point we could successfully treat both symptoms and disease.

What is the Down Side of Having a Health Diagnosis? 

DB: We often label people by using the illness as an adjective: My diabetic patient or my diabetic friend. The person is their illness when using this language. Better to say my patient, or friend, with diabetes. When people are ill, they can take on a sick role that can make them sicker and prolong their illness, with or without a label.

RC: Patients can sometimes become their illness, so to speak. They might be unable to separate illness from themselves, which can lead to a loss of identity and perspective.

Have You Worked with Patients Who Needed to Overcome their Diagnostic Label? 

DB: I frequently diagnose a common congenital heart defect known as a ventricular septal defect (VSD). It’s one of the most common birth defects: 1 in every 240 babies born in the United States. For most children, VSD has no short-term or long-term consequences. Unfortunately, once labeled as having a congenital heart defect physical activity is often modified “just in case.” It can take some time for a child to overcome the label and prove to themselves and others that they can safely participate in sports and play just like their peers.

RC: I worked with a young woman diagnosed with long COVID. It took her time to realize she could do some of the things she used to do before the virus, and that she was not always going to be the person she was in the worst days of her illness.

I also worked with an elderly woman who was struggling to focus on living after her second breast cancer diagnosis and treatment. She was convinced it was just a matter of time before the cancer came back, and it really distracted her from living her life.

What Should Someone who Has Received a Chronic or Difficult Illness Diagnosis Do to Avoid Becoming Their Illness?  

DB: People often need help understanding their illness/diagnosis and treatment. Find the right person to help, learn everything you can, and partner with your healthcare provider to guide your care.

RC: Find others who experience the diagnosis or condition and learn from them how to navigate it. Choose clinicians who know a lot about the condition and with whom you think you can work, especially if it is a long-term situation.

What Should Someone Who Knows or Cares for Someone With a Chronic Illness Diagnosis Do for Them?

DB: Remember that the person with the illness is a person first and that their illness does not define them. Never refer to the person as a “diabetic,” “asthmatic,” and so forth. Words like these define the person rather than the disease and how they live with it. And do not encourage the sick role.

I recommend the Healthy Children website. It contains a lot of great content including how to be a good friend, sibling, or parent of a child living with a chronic condition. There are therapists and support groups for families and friends of children and adults living with chronic conditions. Specialists are often well acquainted with these groups and can help the patient and their support network find and access them.

RC: Learn about the condition, understand what the person needs from their circles, talk with other patients and families facing the same condition so the illness does not separate the person from their lives.

I suggest readers talk with a social worker in whatever department or division from which they are seeking care for patient support resources. They can also contact the National Patient Advocacy Foundation, who are in contact with many, many patient support groups and advocacy groups connected to many different diseases. If you click “Contact” at the bottom of the website, you can ask a specific question about resources for persons with a particular condition. Alternatively, one can browse on-line for patient support groups related to their illness, but these would not be curated suggestions.