Confronting the Future-Tripping Fear of MS

Judy Lynn avatar

by Judy Lynn |

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MS fear and future-tripping, silver linings

You've Got Some Nerves

One presenting symptom of my multiple sclerosis (MS) was severely slowed and slurred speech. There were several other disturbing outcomes of my back-to-back, initial exacerbations, but it was the speech that was my greatest fear. After my second MRI, the neurologist explained that the dysarthria, or trouble speaking, was a likely result of the lesion in my brain stem. Searching the National MS Society website one day, I learned that dysarthria is often joined by its evil twin, dysphagia, or trouble swallowing.

It was not the slow slur or the fact that I had to repeat myself that was particularly frightening, I was adapting to those. For the most part I could tolerate the expressions of sympathy, confusion, annoyance or fear that played on the faces of others while I furiously scribbled notes and powered through sentences sounding like the most determined drunk in the world. The thing that made my dysarthria the most frightening symptom was where it might go.

I began to wonder if I also had dysphagia? There had been the “carrot incident” (never talk with your mouth full of raw carrots). A weird pneumonia in July. Two months of laryngospasms that took seven weeks to diagnose. More time on the internet, reading up about brainstem lesions, caused my fear to spiral out of control. I lay awake in bed at night while visions of feeding tubes and ventilators danced in my head.

A counselor taught me to practice mindfulness, to stay in the present moment, but the future-tripping fear always came back.  At one of my appointments we talked about a strategy that seemed counterintuitive to me, yet it worked! And it has continued to work for me the past 13 years. It helps me deal with all worries, even those outside of MS.

Here’s the trick: If you are going to take a trip into the future, don’t skimp. Whatever your fear is, go ahead and invite it in for a little while.

Fear of the Future, Step One:

Invite the fear in for a chat and be sure you really know who it is! For instance, after spending some quality time with the fear of losing my ability to walk, a lightbulb went off. The real fear was that if I could not walk, I would never find someone to love me, and I would be single forever.  Now, you may quickly want to dismiss this as unreasonable. But if I say to myself, “Oh, go on, that is silly! There are a million loveable things about you!” Well, the fear may duck around the corner, but it will be back. Fear is instinctive, not rational.

“If you have fear of some pain or suffering, you should examine whether there is anything you can do about it. If you can, there is no need to worry about it; if you cannot do anything, then there is also no need to worry.”  – Dalai Lama, XIV

Step Two:

Once you are certain your fear is not another fear in disguise, and you feel you truly understand it, then imagine it has come to pass. What would you do? Are there resources to help? Medications? Adaptive equipment? Make your disaster plan. If the worst-case scenario happened, what would you do?

When a twitchy bladder made me anxious, I researched self-catheterization. Discussion boards where real people shared bladder management solutions taught me that self-catheterization brings freedom and quality of life improvement to many people. Medical websites provided information on other therapies to try before catheterization. This information dispelled the fearful myths in my mind. In the words of Louisa May Alcott, “I am not afraid of storms, for I am learning to sail my ships.” Once you have gathered your info, write down your plan, put it in a drawer, and move on! If the storm hits, you’ll be ready.

In time, my speech made a full recovery. In fact, the brain stem lesion was no longer visible on an MRI six years later. But MS likes to keep us guessing, and there are always strange new symptoms. I practice mindfulness, gratitude and mediocre meditation. (It’s hard!) I try to exercise regularly for stress and anxiety, but inviting my fear in for a visit remains my best strategy. A counselor or skilled professional can help you discover what works best for you.

Don’t be afraid to take a little future-trip; just remember not to stay there too long.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.




Elizabeth avatar


Judy you are strong, courageous and inspiring! I look forward to reading your articles as they offer hope, sage advice and a touch of humor. You truly are one of the most amazing special people I know! EN

Judy Lynn avatar

Judy Lynn

Thank you so much, Elizabeth! Courage is being afraid and doing it anyway, right?

Tammie avatar


Judy, this hits home, slurred speech was also my first symptom that lead to my diagnosis 7 years ago. I use the "what is the worst thing that can happen" scenario and make a plan to deal with it. That always helps me not to feel overwhelmed by the what if's of living with MS. Thank you, it is always reassuring when someone else "gets it".

Judy Lynn avatar

Judy Lynn

It absolutely helps me when I hear from others who are facing the same challenges. I'm glad that technique works for you! There are so many 'what ifs' with MS, it's important to know how to cope with fears about them.

Mary avatar


When you first get diagnosed it is terrifying. Mostly we remember people with ms who were in wheel chairs. However, that’s not everyone. Many of us do fine. In time you will get more of an idea how fast or slow your disease progresses and for those who have a slow progression, you will learn to relax. Over the years you will learn to recognize your own symptoms and look back at times you have had it before and got through it fine and you will again relax. If this doesn’t apply to you and you are wanting to whine and say this isn’t you, then that’s fine. But it is me and I am sure it’s going to apply to some who read this and are really worried and don’t need to be. The other thing is, if you are about to complain about your ms, then that relates to my next comment. I realized that when I stopped doing the following things, my flares stopped. I stopped worrying about my disease and instead viewed it as a challenge and I am going to win. I stopped eating bread and pastas (completely), cut back dairy to only my morning white chocolate latte and I exercise 4-5 times a week (only lifting but it definitely did improve my cardio bc I went hiking and kicked butt when I never did before I lifted). I mostly only eat fruits and meat. Some also cut out dairy and sugar but I am 45 and have had this since I was 21. I have already spent 2 years as a vegetarian, 8 years on strict swank diet and other diet changes and I know for me my flares occur when I eat gluten for more than a week or so. Through personal observations, dairy and sugar weren’t an issue, only gluten. Gluten made me achy and lack energy. Once I eat it for more than about a week, I ended up going from being achy and low energy to having numbness, tingling and an actual flair on MRI. My point is, copaxone was a great med. Once I was more stable with my ms and figured out the diet issues 10 or so years later), I got off the medicines for the last six years and I did well until I tried to gain weight and stupidly began acting gluten again for two weeks and felt so terrible I went to neuro and had an MRI. It showed I had two new lesions. Now I’m back to gluten free. Anyway my point is, make it a challenge you are going to win. Be patient when starting your new medicine and don’t fear the side effects unless they are very bad or don’t go away after six weeks. Cut out all dairy sugar and gluten for six months and go from there. Get to know your body. We are all different and while gluten may not effect you it does me. Sugar doesn’t effect me but gluten very much does and alcohol as well. Maybe alcohol has gluten? Idk. Then fight it. You can win. I am winning. If I didn’t try like I do, ate what I wanted, allowed myself to be heavy and didn’t exercise (if I eat gluten I really do have a flair after a week or two every time), I would not be doing well. I definitely have ms. There is no question, but I do well. You can’t tell looking at me and I will win. So can you...but only if you do these things and KEEP A GOOD ATTITUDE! You can DEFINITELY take control of your ms and prevent or put off the progression. I hope you do and don’t be afraid! Truly! You can do this. I am. I have had this 24 years and before I was diagnosed and began swank diet, I had 16 lesions and I couldn’t move my left arm at all. My entire body twitched and when I looked down I had electric shocks from cervical neck down arms and legs (Lhermittes sign). I don’t stress anymore. I know what to do. MS doesn’t have to mean a wheel chair.


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