Whether you were diagnosed with MS last month, last year or 10+ years ago, we all share some symptoms in common. One of them is anxiety.
Anxiety describes the conflicts that lead to worry–and ultimately to the vortex of self-loathing, scolding, often scalding speeches we make to ourselves when we aren’t sufficiently distracted by the outside world.
Life before MS seemed so much simpler
In retrospect, life before MS seemed so much simpler. Even the most confusing parts were more about social things: misunderstandings and miscommunications, biased judgments, family and romantic conflicts and workplace pressures. How stressful life felt before MS depended on your personality and temperament. Who you are determined how well you coped with social dilemmas.
But things are different now. You got sick in a brand new way and you learned some new words for what it is: relapsing-remitting multiple sclerosis (RRMS), or primary-progressive multiple sclerosis (PPMS), or clinically isolated syndrome (CIS). You struggle to express how MS feels. It’s like trying to convince people you were abducted by aliens. You first rehearse it out loud when you’re alone—but it sounds ridiculous, even to you. You feel like a little kid who is about to tell a whopper of a fib and you want it to sound like it could be true. They’re gonna laugh, you think, or give me a withering look, or tell me to stop being such an attention hound and get over myself.
Keeping your diagnosis a secret
Maybe you decide not to tell. First you simply omit things, telling little white lies at first: I’m feeling fine. Really. Yes, really. Or let’s say your diagnosis was delayed and yesterday you were given the bad news that yes, you definitely have multiple sclerosis. Stunned, you pick a drug treatment. But here’s the kicker: do you tell people at work? Your boss? Enter the next phase of anxiety. You’ve decided to keep it secret.
Then you have trouble falling asleep. The day’s events swirl inside your head. It gets to be a habit. Either you can’t easily fall asleep or you can’t stay asleep. Your body is straining to move limbs in normal ways, propelling itself forward despite devastating fatigue, wonky balance and weakness. The world is oblivious to this. You wish people could see how much you are like Sisyphus pushing the stone up the mountain only to watch it tumble back down, over and over, for eternity. But all they see is a normal person who could jump hurdles on demand. The irony makes you want to scream in frustration.
Living a double life
You are living a double life. Like a ninja/CIA operative, your cover is as a working stiff who has a family, friends, hobbies, a cell phone, and cable television. But you have a dark alter-ego as well, brandishing its arsenal of high-tech chemical weapons against the enemy within. It’s a war waged in a nether world, not in an obscure quarter of a Moroccan Kasbah, but inside your brain and spinal cord. The battle is raging while you sit at your desk, clicking away at your lap top while your ninja avatar equalizes maniacal sociopath T-cells. Your assassin-self scores another victory just as your boss summons you to her office. For a nanosecond, you want to spill it all to her right then, the physical hardship and the mental anguish, but you push your ninja mask off your face and smile to show your strength instead.
It’s enough to make your personality split in two. But must it? John Tsilimparis, MFT, author of the book: Retrain Your Anxious Brain: Practical and Effective Tools to Conquer Anxiety, thinks not. While Tsilimparis is a trained cognitive behavioral therapist, he is also a lifelong anxiety sufferer and approaches the text with both professional expertise and an insider’s personal story. For a discussion about his book and the tools we have to keep ourselves sane, read Part II of my article: WHY WE DEVELOP ANXIETY WITH MS AND WHAT WE CAN DO ABOUT IT.
While there are so many aspects of MS we cannot control, anxiety is one of the exceptions. We are experts in anxiety and its effect on the quality of our lives. But there are really insightful people resources that can help us become the gatekeepers of our anxiety as well. Please join me in a different kind of battle—the fight for a quieter brain.