Relentless. Cunning. Incurable.
Multiple Sclerosis (MS) isn’t a diagnosis Channing Barker expected to hear from her doctor as a teenager, if ever.
“I was really shocked. I hadn’t really ever heard of MS,” Barker tells Millennial.
Unable to walk and in and out of the hospital, Barker spent months suffering through MRIs, blood tests and spinal taps before the diagnosis reared its ugly head in 2006. But she was proactive, willing to have a conversation with her doctor about how to move forward in the face of a lifelong, progressive illness. She wanted to live her best life.
“I got on a disease-modifying therapy immediately upon my diagnosis and I really took charge and took a driver’s seat position in this disease and I wasn’t going to let it stop me,” Barker says.
Thus, Barker has gone on to build a successful career as a morning show reporter, a news anchor and a communications director due to her prioritization of her own health in her battle against a chronic illness that continues to perplex the medical community.
1 MILLION US ADULTS AFFECTED
Estimated to affect nearly one million adults over 18 years old in the U.S., multiple sclerosis is an autoimmune disease according to most experts. MS causes the body to treat its own central nervous system like an invading predator, using hunter B-cells (created in the bone marrow) and T-cells (created in the thymus gland) to attack myelin-producing oligodendrocytes and the myelin sheath covering on nerve fibers, thus disrupting transmission signals fired off from the brain to the body. After stripping the myelin off the nerve like the skin off a squirrel, it’s open season on the exposed fiber and the body more or less eats itself into debilitation.
MS symptoms are all over the place, differing for different people given the vast variety of nerves susceptible to damage. Tremors, double vision, limb weakness, tingling sensations, dizziness and bladder and bowel complications are commonly reported. Long-term consequences even include deteriorating, abnormal locomotion and loss of mobility altogether.
MILLENNIALS ARE LESS PROACTIVE WITH MS
Given the gravity of such an illness, one would assume Millennials diagnosed with Multiple Sclerosis would echo Barker by diligently doing everything possible to be hands-on with their health and establishing a working relationship with their physician to treat the condition, but that often isn’t the case.
“With that [diagnosis] comes a lot of shock and denial and fear, so your first instinct may not be to take those appropriate management strategies to help manage your disease,” says Anne Gilbert, Director of Programs at Can Do MS, a national MS advocacy group. Not only are Millennials less proactive about treating chronic illness, a recent Blue Cross Blue Shield Health Index report discovered that despite receiving significantly more diagnoses of eight of the top 10 health conditions than Generation X, only 68 percent of Millennials even have a primary care physician (as opposed to 91 percent of Gen Xers).
It only makes sense.
Millennials are young. They’re expecting to travel. To meet new people. To start a family. To enjoy the prime of their lives.
“And when you’re in the prime of your life and you think you’re invincible, the last thing you’re expecting is a diagnosis of a chronic disease,” Gilbert adds.
AVERAGE AGE OF MS DIAGNOSIS IS 34 YEARS
With 34 years old being the average age of MS onset, over the next 10 to 15 years most new MS diagnoses will be in millennial-aged people ranging from ages 22 to 39.
So, Gilbert and Barker are raising awareness of MS and encouraging Millennials to advocate for themselves, research management strategies and treatment options that best suit their lifestyle. They encourage others to talk with their healthcare provider about getting early treatment with the appropriate disease-modifying therapy to potentially delay MS disability progression.
Besides communicating with their physician and establishing treatment, Millennials with MS can enhance their health by getting involved with advocacy groups like Can Do MS, which provides people with a multidimensional approach to the spiritual, physical, intellectual, interpersonal and emotional aspects unique to their experience with MS.
LIVING WITH A CHRONIC ILLNESS
The emotional consequences of living with a chronic illness are especially important to Barker given that with an MS diagnosis often comes a diagnosis of depression and anxiety, both of which are compounded by fatigue and the feelings of loneliness created by the disease.
“But you’re not alone … We’re all here for each other,” Barker says.
And speaking with a counselor to work out the grief and trauma of getting a diagnosis is a suggestion Barker wants to hear more often. Her concern over mental health in MS patients is well-justified given that nearly one-third of people with MS have considered suicide during the progression of their disease.
As for people looking to support friends and family with MS who are having a bad day with their symptoms, one of the best things to do is to simply say, “I’m sorry you feel that way today; is there anything I can do to help?”
“Showing up for someone that’s going through a hard time is more than half the battle,” Barker adds. To read more about multiple sclerosis, please visit the Can Do MS and The National MS Society websites.