Julie Stachowiak: About MS
Julie Stachowiak was diagnosed the day before she defended her doctorate in the summer of 2003. “Which didn’t go that well,” she admitted, “and I didn’t feel like I could tell my committee why I was distracted.”
Since then, she’s telling the world.
As the MS columnist for About.com and the author of The Multiple Sclerosis Manifesto, Julie talks openly about her disease. And with a PhD in public health, she helps people understand how the latest research might affect them. “I believe in giving people hope, but a lot of the time MS sucks,” she said. “My goal is to share my reality and translate what it means in real life.”
Julie was frustrated for a long stretch before her diagnosis. “My neurologist said I’d probably had MS for 20 years,” she recalled. “I’d sought help from at least 14 different doctors before I found out what was going on.” When she found her current neurologist, “He pointed to my fiancé and said, ‘We’ll do the meds, but as long as you have him, you’ll be OK.’ That’s gotten me through the years.”
Within six months of her marriage, Julie became pregnant with twin girls, who will be six in December. “I’d take MS over twin pregnancy any day!” she said, even with a relapse six weeks after having the babies.
Now, despite fatigue and cognitive challenges, Julie is doing well. “I’m not seeking perfection in my life anymore—I’m seeking as good as it can be,” she said. “If anything can help me feel even 2 or 3% better, rather than hoping for an all-or-nothing, I’ll take the small improvement.” She gives similar advice to her readers: “Try to work with and accept the situation you’re in, and aim for incremental improvements, rather than mourning the losses and waiting for the day when everything is fixed.”
Julie will be reporting live at the Society's blog from Amsterdam October 19-22 at the fifth joint meeting of ECTRIMS and ACTRIMS (the European and Americas Committees for Treatment and Research in MS) conference. “I’ll carefully choose which sessions and posters will be most interesting to MS community at large and how the latest research might affect them,” she said. ACTRIMS/ECTRIMS is currently the world's largest MS conference, bringing together thousands of scientists and clinicians from all over the world.