The journey from diagnosis to patient advocacy is a road less traveled. Not everyone can both accept their condition and use their voice in a positive way to educate those around them. Since her diagnosis of multiple sclerosis (MS) in 2001, Healthline contributor Sheryl Jacobson Skutelsky has been heading down that path.
Skutelsky writes informative blog posts about life with MS and has also appeared in a Healthline video about the disease, sharing her positive attitude and tips on what has made accepting her illness easier.
Although she was officially diagnosed in 2001, Skutelsky suspects that she'd had the disease for as long as 20 years prior. “I went from doctor to doctor ending up being told that I was suffering stress from a verbally abusive marriage,” she said.
It was a massive headache that drove her to seek relief at the emergency room that ultimately led to a consultation with a neurologist and the MRI scan that confirmed MS.
“Everything was starting to make sense to me after I was finally diagnosed and I actually found out it was MS,” said Skutelsky. “It was almost a relief to find out that all these strange [symptoms] made sense now.”
Making the Invisible Visible
Skutelsky hasn’t always been an advocate, however. She admits that her emotions were typical for someone who's been diagnosed with a debilitating, incurable disease. But she says she wouldn't change a thing, and has decided to learn all that she can from the experience.
Symptoms of MS can range from numbness and tingling to loss of vision, loss of balance, emotional problems, and cognitive deficits—none of which are immediately apparent to the untrained eye.
It’s this general lack of understanding about MS that drives Skutelsky’s advocacy efforts.
“I was tired of people saying, ‘but, you look so good’ while questioning why I need a handicap parking spot or why I need to cancel a date," she said. "I already had a New York vanity license plate that said FIX MS, so 'Fix MS Now' was born.”
Five years ago, when she had to go on disability, Skutelsky decided to focus on advocacy. She had spent her career working as a graphic artist and still owns her own design company. “I needed a purpose to pull myself up out of depression, and it seemed logical to use my graphic design skills to raise MS awareness,” she said.
Help From an Activist’s Best Friend
And Skutelsky is equally passionate about her dogs. One of them, Peanut, has caught the advocacy bug and has his own Facebook page, Peanut Skutelsky, MS Mascot.
“I hope to reach as many new people around the world as possible,” Skutelsky said. “I'm very good at doing research, and I attempt to bring all the latest news I can find to the page as well as answering any questions presented to me that can help others find all the MS resources that are out there.”
Skutelsky also appears on an internet radio program called “Spotlight Radio” where she discusses everything from symptoms of MS to her views on traditional medicine versus a more holistic approach.
“I’ve found that almost everyone knows someone with MS,” she said on the radio show, “yet they themselves don’t know what MS is.”
With the impassioned advocacy of Skutelsky—and her pooch—knowledge is spreading. By educating patients, as well as family members, friends, and caregivers, advocates like Skutelsky are bringing MS information to the masses.