On a recent episode of the MeSsy podcast, Christina Applegate said she doesn’t enjoy living because of her multiple sclerosis (MS) battle. “I’m in a depression right now, which I don’t think I’ve felt that for years,” Applegate said. She admitted to being scared about feeling trapped in a dark place.
It took me 13 years to get diagnosed with multiple sclerosis
Seven years ago, I received my official MS diagnosis after 13 years of pleading with doctors for an answer. In the later part of my diagnostic journey, I’d leave yet another failed doctor’s appointment and return home to my children, who needed me physically and emotionally. Pulling into the driveway, I’d see their energetic bodies running through the yard, and I knew I couldn’t give them what they deserved. I had to cook dinner, bathe them, and make sure they knew they were loved. Yet my body was so weak I had nothing left to give.
There were days I thought I couldn’t possibly go on in a body devoid of energy. I remember one day, just months before my diagnosis, lying on the hallway floor as my body collapsed from exhaustion. “This is it,” I told myself. “I can’t push on anymore.”
Courtesy of the author
I believed I’d live the rest of my life without a diagnosis, withering away and eventually confined to my bed. In those final months before receiving an answer, I fell into a dark space of loneliness and despair because the symptoms I lived with suffocated me daily.
I couldn’t take a break from my symptoms
When you have relentless symptoms like weakness, pain, or fatigue, they limit your ability to experience life. You can’t turn them off — or take a break — so the never-ending battle strips you of your humanity, leaving you feeling hopeless. You begin comparing life before disease onset to your current capabilities, and you mourn the loss of everything in between.
I could no longer take my kids for a walk. Enjoying an afternoon at a museum was out of the question. Eventually, I couldn’t even walk into my son’s school to pick him up at the end of the day. Playing piano, as I once did for enjoyment, left my hands shaky and weak. By the time I found the doctor who diagnosed me, I was smothered by weakness. Without the energy to move, I didn’t feel alive anymore. I was where Christina Applegate is now.
“Give it a few years,” my doctor told me when I began the treatment I’m on now. It sounded like an eternity — I’d already lost more than a decade of my life to this disease, and it didn’t seem fair that I’d have to wait longer for possible relief. My 20s were spent in healthcare facilities, meeting doctors, having exams, and undergoing medical tests. I wasn’t sure I had the mental stamina to wait three more years simply to see if my body might improve. But there was no other alternative.
I took 3 years for my medication to alleviate my symptoms
I began receiving an infusion every six months and prayed my body might resemble itself in some way with time. For the first three years, the infusions worsened every MS symptom I’d ever had. “Give it time,” my doctor reminded me. He trusted the research showing the possibilities of this new medication.
It took three years — just as he thought — to notice a change. My disease wasn’t cured, and symptoms remained, but the intensity of weakness lessened enough for me to feel human again. I slowly emerged from the darkness as I realized there was a way out.
I’ve been on treatment for six years now, and while I do occasionally have exacerbations that bring me back to those dark days, they don’t last long. A few years ago, I started using an exercise bike, and over months and years, with perseverance, I built up my ability to bike 15 miles on relatively flat surfaces. I’ve also been on a gluten-free diet for over a decade, as it seems to help with the chronic pain associated with MS.
Having people who let you cry and vent — or laugh as needed — keeps you from falling backward into the darkness. Christina already has that, as evidenced by what Jamie-Lynn Sigler, her podcast co-host and friend, said to her: “You still make me smile. You make me feel loved. I can’t let you give up. I can’t. I need you to do it for me.”
Jamie thinks there’s a way out, and I do too. MS presents differently in everyone, so symptoms can vary greatly. But I believe finding the right medication, manageable exercise, a healthy diet, and your people can ease symptoms enough to pull you from darkness back into the light.
My body is not perfect — but it’s enough. I have a second chance to live on the bright side, and I believe Christina — and those with a chronic disease — can have that too.
