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Why We Develop Anxiety with MS and What We Can Do About It, Part I of II

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. Retrain Your Anxious Brain: Practical and Effective Tools to Conquer Anxiety, by John Tsilimparis and Daylle Deanna Schwartz, Harlequin Enterprises Limited: Ontario, copyright October 1, 2014. Amazon.
  2. Impact of recently diagnosed multiple sclerosis on quality of life, anxiety, depression and distress of patients and partners, Authors: A. C. J. W. Janssens, P. A. van Doorn, J. B. de Boer, F. G. A. van der Meché, J. Passchier, R. Q. Hintzen. Acta Neurologica Scandinavica: Rotterdam, 12 September 2003, pp. 389-395. www.onlinelibrary.wiley.com/doi/10.1034/j.1600-0404.2003.00166.x/full
  3. How to Differentiate Bipolar Disorder from Unipolar Depression, by Lauren Lebano, Psych Congress Network, July 8, 2013. www.psychcongress.com/article/how-differentiate-bipolar-disorder-unipolar-depression

Comments

  • trloftus
    2 years ago

    I’ve been there too Kim, and have taken the Lexapro trip. For me, it was OK for a while, but wrong for the long term. I kicked Lexapro (which is addictive), and resolved my anxiety by reconnecting with my religion, the Bible, and most importantly, our Lord.
    I recommend reading scripture, and certain self-help authors who base their teachings on the Bible. Our Lord does not want us to be anxious, but wants us to enjoy his gift of life to its utmost. Anxiety is just the demon Satan trying to control our life. Don’t let him win.
    Read and pray or meditate on what you learn. This method is effective, enlightening, and free. I hope people reading this will try.

  • Azjackie
    2 years ago

    Thank you for this article. I completely relate. I hid my RRMS (maybe) for 5 years from family, friends, and coworkers.

    I was fortunate my boss who became my best friend whom I can confide in anything. In fact she took me for my failed spinal tap during the diagnosis process. She has kept my secret of those 5 years even to this day.

    Anxiety is one of my biggest rivals from diagnosis, losing my job, all health insurance possibilities, most recently my car totaled hit in an intersection, to my second cousin passing away at 44 the day after my car accident.

    I had been totaled in an intersection before with severe injuries so I was familiar with tha guilt and anxiety recovering from injuries dealing with insurance and attornies for 2 years.

    All added up and his passing I really feel guilty that it should have been me.

    I really don’t contribute anything. With my back pain from who knows what I do not walk very well mostly falling resorting to crawling so ever working again is unreasonable. I never married or had children so that is not something to fight for. I receive SSDI and financial assistance for medication. They would both like to stop paying I’m sure. I have an immediate family and boyfriend who get to watch me become worse.

    Looking at diagnosis to contribution I do feel anxiety and guilty. It should have been me.

  • Yoshitail9
    2 years ago

    Kim…thanks for another great article and adding to my MS vocabulary….”wonky balance”. I’ll be substituting that term for wall walking !

  • BaltoRic
    2 years ago

    Excellent post! Looking forward to part 2.

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