Losing a Diagnosis Can Be Just as Difficult as Getting One
/By Esca van Blarikom
When actor Christina Applegate revealed that she had been misdiagnosed with multiple sclerosis (MS), she described the experience as “very unnerving” and “really confusing”.
For five years, MS had provided an explanation for her symptoms. Now, although those symptoms remained, the diagnosis that had helped her make sense of them was gone.
“I haven’t gotten better… If anything, I’ve gotten worse in some ways,” she explained. She also described feeling that she had lost the “reason” that had helped her make sense of her daily struggles.
Being told you don’t have a disease might seem like good news. But for someone living with symptoms, losing a diagnosis can mean losing an explanation for their suffering, along with the hope that explanation provides.
My ethnographic research into the experiences of people living with multiple conditions helps explain why. Through interviews and observations, I explored how diagnoses shape people’s understanding of their symptoms, their expectations for treatment and their sense of what the future might hold.
One participant in my London-based study had spent years living with debilitating back pain, struggling to get out of bed in the morning. After tests and referrals, a rheumatologist suggested that her symptoms might have an inflammatory cause.
Although this was only a possible diagnosis, it changed how she understood her condition. The specialist introduced medical terms that helped her make sense of symptoms that seemed confusing and unpredictable.
For the first time, there appeared to be an explanation for her suffering. The possibility of identifying an inflammatory condition also offered hope of treatment and specialist care.
But that hope was short-lived. Weeks later, a scan showed no evidence of the suspected inflammation. She was discharged from the clinic without the answers she had hoped for.
Her symptoms had not disappeared, and in the months that followed, her mental health deteriorated markedly.
Unlike Applegate, this participant had never received a confirmed diagnosis that was subsequently withdrawn. But both experiences reveal how much can be invested in a medical explanation, even before it is established.
For the woman in my study, the disappointing test result meant losing a possible way forward after years of uncertainty.
How Diagnoses Shapes Experience
A diagnosis can influence much more than the treatment someone receives. It can also change how they interpret their symptoms and what they expect from their illness.
Research suggests that the attention we pay to bodily sensations can influence how we experience and report them.
In a 2024 experimental study, researchers found that repeatedly asking people about their symptoms increased the number they reported. This effect was particularly pronounced among people with higher levels of health anxiety or existing symptom distress.
These findings do not mean that symptoms are imagined or caused by receiving a diagnosis. They suggest that our awareness and interpretation of bodily sensations can be influenced by the circumstances in which we experience them.
A diagnosis can also create new fears.
When Applegate first received her MS diagnosis, she spoke about experiencing a profound depression and feeling fatalistic about her future.
People with physical health conditions have an increased risk of depression, although this can reflect many factors, including the effects of illness itself.
Another participant in my research described how her quality of life deteriorated after receiving a diagnosis of a chronic condition.
Before the diagnosis, her symptoms had been difficult to interpret. Afterwards, she increasingly understood them as possible signs of deterioration.
She felt that her quality of life had declined significantly following the diagnosis, rather than simply after the onset of her symptoms.
This illustrates how receiving a medical explanation can alter someone’s expectations about their future, particularly when a condition is presented as chronic or difficult to treat.
Research on nocebo effects offers one possible insight into the relationship between expectations and symptoms. Experimental studies have shown that negative expectations can increase experiences of pain through psychological and physiological processes.
This does not establish that the diagnosis caused my participant’s deterioration. However, it helps illustrate why the expectations surrounding illness deserve attention alongside its physical effects.
What Happens When the Diagnosis Disappears
A diagnosis can provide access to treatment, but it may also offer recognition, reassurance and a sense of belonging.
Applegate has spoken about finding support within the MS community. Losing her diagnosis therefore raised questions extending beyond her medical treatment, including her place within a community that had become important to her.
For people with persistent symptoms, the absence of a diagnosis can also create difficulties in having their experiences understood and taken seriously.
Researchers studying unexplained symptoms have highlighted the disadvantages people can face when they lack a shared explanation for what they are experiencing.
This is why a negative test result does not necessarily resolve a patient’s difficulties. It may rule out one possible cause while leaving the symptoms, and the need for care, unchanged.
The challenge for healthcare professionals is to communicate diagnostic uncertainty without leaving patients feeling abandoned.
A 2024 study of GP consultations found that doctors varied considerably in how they explained plans for managing uncertain diagnoses. Some offered detailed guidance, while others provided less information about what patients should do if symptoms persisted or worsened.
For patients who have lost a diagnosis, continuing care might involve explaining why the original diagnosis has changed, acknowledging the distress that this can cause and agreeing on the next steps for investigation or symptom management.
These conversations also need to recognise that ruling out a particular disease does not invalidate the symptoms someone continues to experience.
Applegate’s experience illustrates something important about the role diagnoses play in people’s lives. They can shape how we understand our bodies, our relationships with others and our expectations for the future.
When a diagnosis is withdrawn, those understandings may have to be rebuilt, even as the symptoms that prompted the original investigation continue.
For doctors, the responsibility does not end when a diagnosis is ruled out. Patients still need help making sense of what is happening to them, especially when medicine cannot yet provide a clear answer.
Esca van Blarikom, PhD, is a researcher of medical anthropology for the Department of Global Health & Social Medicine at King's College London.
This article originally appeared in The Conversation and is republished with permission.
