In the five years since her diagnosis with multiple sclerosis, the Emmy award-winning actor Christina Applegate has become a prominent spokesperson for people living with the neurological disease. Both her memoir, published earlier this year, and the MS-themed podcast MeSsy that she co-hosts with fellow actor Jamie Lynn Sigler have significantly raised public awareness about multiple sclerosis and the broader topic of living with disability.So Applegate’s recent revelation that her neurologist now believes that she does not have the disease after all came as a shock to me and to many other people living with multiple sclerosis.
We understand why Applegate says that she does not regard her health update as good news. The undiagnosis is not a cure – she is just as sick as she ever was, but “back to square one” when it comes to explanations.
Medical experts interviewed about Applegate’s case reassure us that most people being treated for multiple sclerosis can be confident in our diagnoses and advise those of us with concerns to consult our neurologists for reassessment.But Applegate’s experience is not an isolated event. A 2024 systematic review found that about 15% of the MS cases it studied were misdiagnosed, with women twice as likely as men to be diagnosed as having the disease when they did not.
And underdiagnosis is also commonplace, with many patients waiting months or years for their disease to be correctly identified and treated.My own diagnosis with remitting-relapsing multiple sclerosis 20 years ago came after a long period of being misdiagnosised with bipolar disorder.I had initially been referred to the psychiatrist who (mis)diagnosed me while I was recovering from trauma. The heart-stopping panic attacks gradually subsided thanks to cognitive behavioural therapy rather than the cocktail of antidepressants and antipsychotics that I had been prescribed for bipolar disorder, but my physical health continued to decline.My psychiatrist’s response was to increase the dosage of my medication, dismissing any concerns that I expressed by telling me that “intelligent women like you” are often unwilling to accept that they have a psychiatric disorder.
The words “intelligent women like you” came to sound like an insult 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 walking stick for support; even then, the first neurologist I consulted dismissed 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 scan, I had put my symptoms down to a madness caused by the political upheaval and bloodshed of the early 2000s. But when I tried to explain this to the neurologist, he paused for a long moment before saying, “The scan was abnormal”.Of course, it is entirely possible (and not particularly unusual) to have both bipolar disorder and multiple sclerosis.
My psychiatrist told me in our final phone call that “intelligent women like you” often seize upon the diagnosis of a physical disease to deny that they are also suffering from a psychiatric condition. But my health immediately improved once I was taken off the bipolar medication and began treatment for multiple sclerosis.The years since the diagnosis have not been easy.
As a disease of the brain and central nervous system, multiple sclerosis has an endless array of weapons at its disposal and the treatments have ranged from daily self-injections to monthly infusions to a demanding immune system reboot. But nothing that the disease has thrown at me has been as difficult as the fear and uncertainty of the gruelling pre-diagnosis period.The boundary between the diagnosed and undiagnosed has become the border between worthy and unworthy, deserving and undeserving, entitlement to disability support payments 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 stigmatised as grifters and malingerers.
We should not be dismissed as time-wasters because the diagnostic process is complex and lengthy.My symptoms ought to have been taken seriously regardless of whether their underlying cause was multiple sclerosis or bipolar disorder. And, once diagnosed, we should not have to fear that a doctor’s second thoughts will make us second-class patients.