Grieving and multiple sclerosis don’t go together: instead, be determined

July 22, 2010

Overcoming Multiple Sclerosis blogger, Rebecca Hoover

Ever since Dr Elisabeth Kubler-Ross wrote about the five stages of grieving (denial and isolation, anger, bargaining, depression and acceptance), well-meaning advice givers have been advising those with multiple sclerosis (MS) to take time to grieve and to learn to cope with what is certain to be a difficult future ahead. If you have received this advice and are frightened half to death, it is helpful to remember there is plenty of hard evidence that this well-meaning advice is the worst advice any newly diagnosed person can get. Even if you have had MS for years, this advice is lousy.

If you want to beat MS, you are best off with a determined attitude not hopeless resignation. The evidence of the importance of determination comes from history − cases of real individuals who have had MS or other physical problems − and research evidence. You might be surprised at the extent to which a hopeless attitude contributes to unnecessary problems with MS. Below you will find some tips on avoiding this problem by overcoming fear.

Some of the best historical examples of the importance of determination in overcoming a little adversity come from figures in United States public life: Franklin D. Roosevelt, Barbara Jordan and Paul Wellstone. Franklin D. Roosevelt was afflicted with polio and went on to become one of the most loved and effective presidents ever elected in the United States. If you need inspiration, reading biographies of Roosevelt and learning of the ways he used a stubborn iron will and compassion for others is inspirational.

Barbara Jordan, a United States Congresswoman with MS was similarly inspiring. Afflicted with MS before most knew how to minimize the effects of MS, Barbara Jordan, who was African-American, used sheer willpower to focus on the abilities she did have to serve effectively and to help lead the fight for racial equality in the United States. Similarly, Paul Wellstone, a populist senator from Minnesota had MS but MS did not have him. A small man, perhaps 5’6” tall, Wellstone tackled an entrenched and wealthy conservative senator and changed Minnesota’s political landscape.

The effectiveness of the coping strategies of these public figures is supported by actual scientific research. Research shows that avoiding fear and hopelessness is important to beating MS as are continued physical activity and intellectual effort.

One especially telling study found that there is a relationship between actual MS disability and fears about MS fatigue and avoidance behavior. (For an abstract of this study see Fatigue and physical disability in patients with multiple sclerosis: a structural equation modeling approach.) This finding prompted researchers to warn that MS patients to avoid catastrophic thinking and to address avoidance behavior. In other words, we need to follow the example of our historical heroes and live boldly and with determination.

Similarly another study found that hopelessness and other ineffective coping strategies led to a worsening of MS fatigue. (For an abstract of this study, see The connection between coping mechanisms, depression, anxiety and fatigue in multiple sclerosis.) Again, the study shows we are best off avoiding the well-meaning but silly advice about grieving and best off following the examples of our heroes. It is especially helpful to note that “emotional ventilation” or the continued moaning about MS symptoms and problems seems to merely aggravate depression and anxiety. It is one thing to share information about MS problems and to seek related solutions when needed, but it is another to dwell on these problems unnecessarily. Rather than this unhelpful dwelling on problems, a determined optimism is needed.

WKitchen pic 300hen all is said and done, heroes do not sit around and grieve on and on. Instead, they get determined. Determination is the key to making the life style changes needed to beat MS and then suggest some ways to overcome fear. Some of the best ways to overcome fear and a lack of determination are to:

  • Read biographies and learn in detail about the lives of those who have lived very full lives despite having problems such MS or polio. The lives of those such as Roosevelt and Wellstone provide excellent examples of effective coping.
  • Get exercise because exercise by itself alleviates hopelessness and depression.
  • Stick to an MS diet because a healthy diet contributes to a feeling of vigor.
  • Set impossibly high goals and go after them. The world has been changed by those who believed that the sky is the limit. It helps to adopt this attitude too.
  • Resolve to be determined and celebrate stubbornness.
  • Resolve everyday to make the life style changes needed to beat MS. Keep a journal of daily activities in support of a life style change plan.
  • Resolve to find support, even if it is just on the Internet, for making life style changes.
  • Reread Jelinek’s book and The Multiple Sclerosis Diet Book.
  • Ask yourself if you would rather spend your life grieving unnecessarily or having some fun.

Our much beloved Dr. Roy L. Swank recognized the importance of determination long, long ago. In his book, The Multiple Sclerosis Diet Book, Swank thought the issue of determination was important enough that he talked about it on page 2. He said, “This [the Swank MS Diet] should be accompanied by adequate rest, a reduction of stress, and the adoption of a mental attitude that fosters optimism and a determination to live a satisfying life … .”

Later in the book, on page 43, Swank talks about the patients who are not sufficiently determined. He writes: “5. The patient’s spouse may now be working full-time and has the added responsibility of taking care of many household chores. Usually the family does not mind the added responsibility if the patient is also doing everything possible to maintain his or her health.

The patient must stay on the diet and rest as directed. It’s frustrating for the family to be working hard knowing that the patient is not holding up his or her end of the bargain.” Swank actually used italics as shown here to emphasize his point. It is apparent from this that Swank thought those of us with MS have a responsibility to be determined and to do the best we can do.

Healthy living and determination are very important, and don’t forget the healthy life style that beats MS also makes you look your best.

Please help us all by writing lots of comments about this blog entry. Please write especially about what inspired you to make life style changes and what the results have been. Have your symptoms improved? How? What advice do you have for others? Please also share information on what or who inspires you to be determined when you are feeling depressed. Are there biographies or books you turn to for inspiration and would recommend for others?
Copyright 2010 Rebecca Hoover

2 thoughts on ‘Grieving and multiple sclerosis don’t go together: instead, be determined

  1. Grest stuff Rebecca. Ive tried to be faithful to the diet and myself in the process but allowed myself to be derailed by some pretty stresful events and the apathetic attitudes of those around me that should support and encourage me. Im diagnosed 10 years now and have some serious issues including the prospect of a feeding tube due to issues with my oesophogus created by damage to the vagus nerve caused by the ms. Its an uphill battle always but the choice is between logical hope or meaningless decline and i know which i choose.
    Ill be doing all i can to stick with diet and any new developments as they come along and hope to get some repair as well as putting this disease back into remission.

    • Steve, have you tried goldenseal for your esophogus tightening? 2 weeks on, 2 weeks off for 3 years. It kills a pathogen that may be responsible for this symptom. A probiotic would be good for the 2 weeks off. Susan

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