Fear: Confronting the enemy

I want to pick up where Trevis left off – talking about how he and his wife confronted fears about the future and advanced MS by getting to know more about the “enemy". Fear of the disease can be disabling, sometimes more than the disease itself. Fear can literally stop people in their tracks.

So the best strategy is often to think about what frightens you the most (which will be different for every individual) – whether it’s reduced mobility, loss of employment, threats to your independence, a shortened life expectancy, or anything else – and work proactively to help yourself feel less vulnerable, safer, healthier, and more in control. The next step is to get educated about the issue or issues that scare you and take steps to build your safety net. And if you’re not sure how to go about that, an MS Navigator can guide you.

For some people, the fear of dying from MS can loom so large that they forget some simple facts: Most people with MS die from cancer, heart disease, and stroke, just like everyone else. The rare instances of MS that lead to an early death are just that – extremely rare. The “complications of MS” that Trevis describes so accurately are largely preventable through an active collaboration with your healthcare providers, including those who help manage your MS and your primary care physician.

So here are some tips for getting your fears about your life expectancy under control or, better yet, using them to fuel your efforts to maintain your highest possible level of health and wellness in spite of MS. In other words, these strategies can help you focus on the things you can control rather than the unpredictability of MS.
  • Take steps today to protect your physical health. Follow the Preventive Care Recommendations for Adults with MS; eat a healthy, balanced diet; follow an exercise plan that’s geared to your abilities and limitations; get sufficient sleep; and, believe it or not, take good care of your teeth and gums (YES – tooth decay and gum disease can affect your MS!).
  • Work with your healthcare team to manage your symptoms – and don’t wait until they’re unmanageable, do it now. Get your bladder under control so that you can feel more comfortable and reduce your risk of infections; If your mobility is reduced and you’re sitting or lying down much of the time, learn how to protect your skin and keep it healthy; If you notice changes in your breathing or find it harder to take deep breaths, don’t wait for a crisis – ask your physician for an assessment of your pulmonary function so that you can get treatment if you need it; If you find yourself having difficulty swallowing different kinds of foods or liquids, or you have a choking episode, ask for a swallowing evaluation by a speech/language pathologist. Every clinician who works in MS wishes that people would report their symptoms early on, when more can be done and crises and be averted.
  • Pay attention to your mood. Being depressed isn’t about being weak or a sissy. It’s a very common symptom of MS (more than 50% of people experience a major depressive event at some point in their disease) that results from changes in the brain and the immune system as well as distress about the illness. It’s highly treatable, with a combination of talk therapy, medication if needed, and exercise. And like every other symptom, it’s best to get it under control before it puts you on the sidelines. As Trevis said, it’s undiagnosed and untreated or undertreated depression that puts people at risk for suicide.
So the fact is that you can shrink the fear down to a reasonable size by focusing on the things you can control – and taking steps to manage your health now. Look the enemy in the face, get informed, engage your healthcare team, and take charge of your MS.
Tags Healthy Living, Symptoms, Treatment      4 Appreciate this
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Rosalind Kalb, PhD

Rosalind Kalb, PhD is Vice President of Clinical Care at the National MS Society, developing and providing materials, tools, and consultation services for healthcare professionals. As a clinical psychologist in private practice, Dr. Kalb provided individual and family therapy for people living with MS for more than 25 years. She is the author of the National MS Society’s Knowledge is Power series for individuals newly diagnosed with MS and senior author of Multiple Sclerosis for Dummies.

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  • Karen   Jul 31, 2013 1:46 PM
    Talking to your health team (and God) is so important. You mention many good points that took me a while to realize. I've been in a wheelchair for five years now, but insisted on keeping my high stress desk job as advertising exec. Six months ago I decided it was time to live - instead of live to work. I haven't had a uti since - and I've been able to swallow consistently. Losing mobility is awful, I won't joke - but difficult as it is, life does go on and admitting I wasn't superwoman was a big help. I am still a super lady - I just finally prioritized. Hurdles - oh yeah. Are they all solved - most likely never. But facing them, making a plan for what I could, and accepting what I had to, helped me.
  • sue   Jul 31, 2013 6:05 PM
    My biggest fear is losing my independence totally, that plus my health in general is going down hill. I keep trying to be independent & I want so much to be able to get my own place. Having ms is difficult, but not having someone who understands is hurtful...
  • Lisa marshall   Aug 1, 2013 1:25 AM
    my brother lives away from us because of his choice in cities. he jus started this site 2 familiarize us with the disease. I try 2 let him live his life n not complicate him with questionable reminders. how can iI help him 2 show support without complicating his emotions. MAYB I'm avoiding subject
  • Amy   Aug 1, 2013 10:00 AM
    I'm soooo scared. Mostly of losing my mobility and my independence--also, my cognitive skill seem to be messed up. I wish my family understood. I'm just not coping well with the changes.
  • Martin Matko   Aug 19, 2013 12:20 AM
    I fear not getting treatment for my Autonomic Dysfunction soon enough !
  • Melanie Price   Jan 26, 2016 3:45 PM
    I wish to share my thoughts,quickly and honestly. First I have been disgnosed since 1973 thats 43 years with MS! It was only after I had my hip replaced that my walking became difficult, now imposssible. I still get arouund in a power chair( to medical appointments, grocery store and walk my dog) I do not drive but I go where ever I want and do what ever I choose. My secret positive thinking, yearly trips to the nuerologist and NEVER giving up. After I was diagnosised I got a degree an worked at BOEING, until I felt I was better off retiring and sleeping inorder to remain active. It can be done EVERYTHING IN MODERATION, NO EXCEPTIONS! gIVE IT AN HONEST TRY..Rid yourself of any and all that causes stress, irratation and sadness.