We Bring a Lot of Baggage to That MS Diagnosis

The day we were diagnosed with MS was not the day our lives began. We were students, employees, parents, athletes, artists, volunteers, and a myriad other things before MS got tacked onto our identities like academic credentials on a resume. And baggage. Boy did we bring a lot of it into that murky little pond. The burdens, quirks, anxieties, and temperaments we dragged around before we got sick determine how well we adapt to life—and to having MS.

The complexities of identity

The permanent nature of the disease makes our baggage feel heavier. If we develop appendicitis and were never sick before, this acute health crisis can reveal aspects of our personalities that show how we cope with crisis. We might become helpless, scared and childlike, or surly, withdrawn, and suspicious, or strong, calm, and in charge. When the crisis is over and we are healed, we return to “normal.”

But that doesn’t happen with a chronic illness like MS. We’re stuck with it—and stuck with who we are in the situation. Who is that, exactly?

We are our own unique bundle of insecurities, opinions, fears, comorbidities, strengths and weaknesses. If you fed your name into a profile database, what info would it spit out? Introvert, sensitive, shy? Paranoid, narcissist, sociopath? Psychotic? Immature? Old soul? Substance abuser? Natural leader? Empath? Healer? Bi-polar? Gifted? Developmentally disabled? Only child? Insecure? Shallow, or deep? Selfish, or compassionate? Passive-aggressive--or a straight-shooter? And last but not least, if you are an abuse survivor, you’re definitely not alone.

Substance abuse and child sexual abuse are two common issues people live with alongside the stresses chronic illness can create.

Several troubled souls with MS have contacted me privately for support and feedback about some pretty serious problems unrelated to the disease. Those difficulties ranged from substance abuse to blood incest. Sadly, they reflect the population at large. According to a 2014 study, ten percent of the general population struggled with substance abuse that year, with 80 percent of those using both alcohol and drugs. The MS community is not spared these addictions; users either bring their addictions along in their new disease journey or get addicted to painkillers to manage MS-related symptoms. Mental health issues tie in to substance abuse as well. People who develop mental illnesses but go undiagnosed and untreated often self-medicate with street drugs. This too can either precede MS or develop down the road.

Exposing unpleasant truths

But the least talked about issue is the most pervasive. The sexual abuse of children happens to one out of three girls and one out of five boys before they reach age 18. Up to 40 percent of those assaults are committed by male blood relatives. The majority of children are age five and under. Just one out of ten of those children will ever tell anybody.

Denial keeps a community from truly being as healthy as it looks on the surface. Families sacrifice the well-being of an abused child to keep the grown-ups’ reputation intact. Children keep quiet about alcoholic parents and pedophile cousins to keep the peace. Disabled people slip into depression after hiding themselves so as not to burst the bubble of the “happy” privileged few. We’d all like to believe that everyone has been dealt the same lucky cards, but it just isn’t so. Pulling back the curtain to expose unpleasant truths might tear at the fabric that holds a community together. But a society is only as healthy as its sickest souls.

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