Christina Applegate’s multiple sclerosis misdiagnosis is not an isolated event. I should know | Shakira Hussein

In the five years since her multiple sclerosis diagnosis, Emmy Award-winning actress Christina Applegate has become a prominent spokesperson for people living with the neurological disease. Her memoir, released earlier this year, and the MS-themed podcast MeSsy that she co-hosts with fellow actor Jamie Lynn Sigler have significantly raised awareness of multiple sclerosis and the broader topic of living with a disability.

So Applegate’s recent revelation that her neurologist now believes she doesn’t have the disease after all came as a shock to me and many others living with multiple sclerosis. We understand why Applegate says she doesn’t view her health point as good news. Non-diagnosis is not a cure – she is still as ill as before, but it is “back to square one” when it comes to explanations. Medical experts interviewed about Applegate’s case reassure us that most people treated for multiple sclerosis can have confidence in our diagnoses and advise those of us who have concerns to consult our neurologists for re-evaluation.

But Applegate’s experience is not an isolated event. A 2024 systematic review found that around 15% of MS cases studied were misdiagnosed, with women twice as likely as men to be diagnosed with the disease when they were not. And underdiagnosis is also common, with many patients waiting months or even years for their disease to be correctly identified and treated.

My own diagnosis of relapsing-remitting multiple sclerosis 20 years ago came after a long period of misdiagnosis of bipolar disorder.

I had initially been referred to the psychiatrist who had (mis)diagnosed me while I was recovering from trauma. The heart-stopping panic attacks gradually eased with cognitive behavioral therapy rather than the cocktail of antidepressants and antipsychotics I’d been prescribed for bipolar disorder, but my physical health continued to deteriorate.

My psychiatrist’s response was to increase the dose of my medication, dismissing all the concerns I had expressed by telling me that “intelligent women like you” are often reluctant to accept that they have a psychiatric disorder. The words “intelligent women like you” seemed like an insult to me as I heard them recited more and more often.

Eventually my health reached crisis point with a flare-up that left me unable to stand without a cane to support me; Even then, the first neurologist I saw described my symptoms as psychiatric – “very common in women like you.”

It was the words “women like you” that motivated me to seek a second opinion.

By the time I saw the second neurologist and had an MRI, I had blamed my symptoms on madness brought on by the political upheaval and bloodshed of the early 2000s. But when I tried to explain this to the neurologist, he took a long pause before saying, “The ultrasound was abnormal.” »

Of course, it’s entirely possible (and not particularly unusual) to have bipolar disorder and multiple sclerosis. My psychiatrist told me during our last phone call that “smart women like you” often take advantage of a diagnosis of a physical illness to deny that they also have a psychiatric problem. But my health immediately improved once I stopped bipolar treatment and started treatment for multiple sclerosis.

The years since diagnosis have not been easy. As a disease of the brain and central nervous system, multiple sclerosis has an endless array of weapons, and treatments range from daily self-injections to monthly infusions to a demanding reboot of the immune system. But nothing the illness has thrown at me has been as difficult as the fear and uncertainty of the exhausting pre-diagnosis period.

The line between the diagnosed and undiagnosed has become the line between the worthy and the undeserving, the deserving and the undeserving, the right to disability support and destitution. Applegate’s experience illustrates how uncertain and contested this boundary is. The legions of people like her who are sick but undiagnosed deserve better than to be branded as scammers and malingerers. We should not be seen as time wasters because the diagnostic process is complex and time consuming.

My symptoms should have been taken seriously, whether their underlying cause was multiple sclerosis or bipolar disorder. And once the diagnosis is made, we shouldn’t have to worry that the doctor’s doubts will make us second-class patients.