On MS Novels and Novel Treatments

In Robert Douglas-Fairhurst’s 2023 memoir, Metamorphosis, I came across an extensive reading list of multiple sclerosis novels. The Oxford professor of literature and professional researcher, after receiving his own MS diagnosis, executed a comprehensive search of published stories about the disease, determining that “it turns out there’s a sizeable subgenre of novels in which a character with MS takes centre stage.” I’ve been effectuating my own foray into MS memoirs, but Douglas-Fairhurst’s reading list inspired me to take a detour into the world of fiction, doubling my to-read pile in the process.

Douglas-Fairhurst distilled this subgenre of diseased literary content into three categories:

• Facing Up to the Truth - a subset of primarily male protagonists who attempt to lead a “normal” life while denying the ravages occurring in their central nervous system.

• When You Wish Upon a Star - a collection of magical thinking where MS-riddled protagonists travel to fantasy worlds wherein they encounter a cure for their incurable disease.

• It Can Happen to You - the largest piece of the pie which combines the previous two categories and “adds a generous dollop of romance.”

A cursory search at the library led me to three available books of the ten titles mentioned in Douglas-Fairhurst’s memoir chapter, Telling Stories—all of which happen to feature female narrators and fall into the “It Can Happen to You” category. In the two that I have read thus far, Out of the Blue by Sally Mandel and The Breakdown Lane by Jacqyuelyn Mitchard, the communicated moral is that, ultimately, “All You Need is Love.”

To sum them up in broad strokes: a single woman receives an unexpected MS diagnosis. As the disease ravages her body and upends her life, she relies on members of her family to act as caretakers while avowing that no man could ever love a doomed and disabled woman—only to be pleasantly surprised (and saved!) by a strapping, handsome, rich man (ideally in the medical field) who vows to love her no matter how ugly the disease becomes. Not entirely realistic…

Then again, I think it’s important to note the publication dates of these books. Out of the Blue came to readers in early 2000. The Breakdown Lane followed six years later. Treatment options for multiple sclerosis remained grim and minimal at this time—only four drugs were available when the authors wrote these books, all of which were self-administered injections. 

To put that number into perspective, when I was diagnosed with MS in 2014 there were ten available disease modifying treatments (DMTs) and three different administration options (injections, oral pills, or infusions). Presently, in 2026, there are over twenty FDA-approved DMTs on the market. While the disease itself remains incurable, this panoply of treatments provides a promising means to reduce the frequency and severity of relapses, delay disability progression, and prevent new brain lesions. It demonstrates a remarkable rate of advancement in multiple sclerosis medicine since the first DMT became available in 1993.

You read that right: 1993. 

Up until the 1990s, receiving a multiple sclerosis diagnosis near guaranteed an early death and a life of disability. Beginning in the 1950s, a doctor could try to suppress disease activity with occasional steroid infusions—the most common reactionary treatment for MS relapses—but prior to that, multiple sclerosis was treated with extremely dangerous measures. These included electroshock therapy, injections of malaria parasites, and dosings of mercury or arsenic. For a disease that was identified in the medical field in the 1860s (by French doctor Jean-Martin Charcot, the “founder of modern neurology”)—and which can plausibly be traced back to the Catholic Saint Lidwina in the 14th Century—the delay in adequate treatment options is ludicrous.

No wonder the women of Out of the Blue and The Breakdown Lane equated their diagnoses with doomed spinsterhood. 

They aren’t alone. I, too, questioned the degree to which I could be loved as a young woman with MS. While I was in a relationship at the time of my diagnosis—and my partner stuck with me through some truly horrendous episodes—I ultimately knew that we made better friends than lovers. Except I feared what would befall me should the two of us end our relationship. When that came to pass, I found myself running from companionship and turning to alcohol to provide liquid courage whenever I needed to tell a potential boyfriend my diseased little secret. Just like the fictional protagonists, I wondered, Who could possibly love me, knowing that I come with the baggage of a debilitating and incurable disease?

There is a movie from the 1940s that displays a counter to this question. Ich Klage An (roughly translated to “I Accuse”) tells the story of Hanna Heyt, a blushing German bride who declines neurologically over the course of the film from an initial interruption to her piano-playing abilities to fully-fledged bedridden disability. She is loved by not one, but two respectable men, both of whom work in the medical field—a researcher and a practitioner. Ultimately, the degree of their love is determined by whom is willing to perform assisted suicide on her hopeless case.

Did I mention that this is a Nazi pro-euthanasia propaganda film? Hanna is the picture of “life unworthy of life.” That’s the unfortunate historical narrative of MS that we must contend with.

Here’s the thing: love is lovely. But more than love, what every person living with multiple sclerosis needs is a disease modifying therapy that works. Sure, I would like love. Because my current DMT is managing the disease adequately, I have hope that it’s in the cards for me. But, in addition to love, I want my lost myelin back. 

What I truly need and truly want is effective research that flips the script on this incurable disease. 

An MS diagnosis is no longer a death sentence. Thank goodness. And its prognosis is far more optimistic than it was a quarter of a century ago. But there is still progress to be made. 

Bring on the novel treatments that provide realistic hope and redemption.