An Incurable Disease Affects Identity

This article relates to The Inward Empire

Multiple Sclerosis (MS) is not shameful and shouldn't be something that is kept secret. However, an MS diagnosis plays with the mind – and that is before the hallucinations and trembling and tremors begin – and patients can feel like they did something wrong. The Inward Empire: Mapping Out the Wilds of Fatherhood and Mortality Christian Donlan's memoir about MS and fatherhood, should be required reading for every medical school course that focuses on patient life. His perspective as a father and man not yet in middle age struggling as he negotiates a strange disease is rich evidence for practitioners about the ways a disease can affect, not only a person's body, but also their identity.

Actress Jamie-Lynn Sigler of Sopranos fame has relapsing-remitting MS, the same kind that Christian Donlan has. She was first diagnosed at the age of 20 and the symptoms were slow and often dormant which created a false sense of hope in her mind. She wasn't symptomatic, so she kept it a secret. Like many people diagnosed with an illness, Sigler kept her medical history in a compartmentalized corner, excavating it when necessary. She was also cavalier about her medication, sometimes taking it, other times not. She didn't want to believe this was happening to her brain and because the symptoms came and went she tricked herself into downplaying their severity. But after motherhood, her symptoms became more regular. She had trouble with mobility, particularly on stairs, and running had to become a memory. The person she used to be was gone. She had to adapt to the woman MS had changed. Denial was a very powerful drug in the early stages as she immersed herself in pretense.

It's natural. No one wants change. Particularly not change for the worse. Particularly not change that is out of one's control. Imagining dependency and pain creates fear so powerful it becomes easy to pretend nothing is wrong which helps negotiate the post-diagnostic days.

But something is wrong.

The fear of living with a disease like MS is real, of course. It can be painful, it can limit independence, it can change a person's body. But just as importantly, it can change the way someone sees himself and the way he believe others see him. Often it stems less from what someone can handle and more from what others cannot. Anticipating the change in relationships creates stress and can become a self-fulfilling prophesy. Expecting people to pull away, some people are distant, which creates a self-fulfilling prophesy. The happy, extroverted person is now the insular, quiet person.

Men tend to suffer an additional loss when diagnosed with a chronic illness. Their masculine identity erodes as they experience dependency. Anger and brooding behaviors often self-soothe the male ego used to independence and not needing anyone.

Clinicians agree that "normalizing" stabilizes both men and women. Normalizing simply means adapting to the new life of a chronic illness. It means letting go of the old life and accepting what life is now. Medicine. Pain. Doctors' appointments. Limitations. Often, it can take years to normalize and for the new identity to take root. Whether you have MS or any other disease, health practitioners all tell you the same thing: do what you love. Christian Donlan took his family to Barcelona. Creating joy in those small pockets of life reconnects the entire family. Parts of the person remain intact, the part the illness cannot erase.

Filed under Medicine, Science and Tech

This article relates to The Inward Empire. It first ran in the June 20, 2018 issue of BookBrowse Recommends.

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