Diagnosed with narcolepsy in my mid-twenties, the concept of a “care giver” scared me deeply. I didn’t want to be a burden on anyone. Like most twenty-somethings, independence was very important to me. I had recently moved away, chosen an ambitious career path, and planned to survive and thrive on my own.
Narcolepsy was clearly not in those grand plans. None-the-less, when faced with narcolepsy, I was determined to take on the major medications and life-style changes best I could on my own.
At the time, I equated accepting help with weakness. Relying on someone would’ve meant that I’d given up on myself and let my illness win. My stubborn determination didn’t make me healthy again, but it satisfied my big ego, at least for a while.
Five and a half years later, here’s what I learned:
1. Support starts within: Oddly, many wonderful people are really good at seeing the worst in themselves. I had to learn to muffle my negative self-talk and treat myself like I treat others. When is the last time you told a dear friend, “You’re a terrible person for skipping your workout today”? Never – because it’s ridiculous! You deserve the same compassion, and it must start within.
2. Finding support: Newly diagnosed with narcolepsy, some of the people closest to me were not offering care. Sadly, they didn’t seem to understand or empathize, no matter how hard I tried to explain. The disconnect was disheartening and isolating. With time, I made friends who did “get it” and believed I was amazing for overcoming adversity. I quickly gravitated towards these friendships.
3. Learning to lean on others: When supportive friends offered help, my gut response was still to say, “No! Reject!” But with time, I realized that accepting care did not mean that I am weak or disabled. Instead, being honest with my needs and letting people help me was smart and strategic, working with everything I had, my advantages and disadvantages, to create my best life.
4. Creating a personal Board of Directors: Chronic illness can feel as overwhelming as running a Fortune 500 company at times. This past year, I created a personal Board of Directors a.k.a. “Team Julie,” listing 8 – 10 people who know me from different aspects of my life. We don’t hold formal meetings or conference calls, but these are my go-to friends on speed dial when I need advice, assistance or a shoulder to cry on.
In my twenties, I didn’t have any one person as my main pillar of support. First, I had to learn to care for myself, and eventually, to accept help from others. “Team Julie” may be an unconventional version of care-giving, but we’ve made it through the darkest of days.
And now that I can accept care, I am more restored and better able to be there for my loved ones. With time, I imagine we all lean on each other. As Leonardo da Vinci once said, “An arch consists of two weaknesses, which, leaning on each other, become a strength.”
This article was first published in Community Magazine (Spring 2013).