(This post was written for use on the wonderful website Overcoming Multiple Sclerosis of medical professor George Jelinek, M.D. I encourage you to visit that website too.)
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, as I have, 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.
My favorite 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.
I have been inspired especially by the stories of Roosevelt and Wellstone many times, and, as I think about the silly advice to “take time to grieve” I think about how much poorer the world would be if Roosevelt, Wellstone and Jordan had not ignored such silly advice. Wellstone’s life is especially meaningful to me because he lived only a few miles from me and I encountered him many times. Never once did I see him talking about his MS or belaboring other health problems – instead he focused on helping solve the problems of others. For example, thanks to Paul Wellstone, health insurance policies in the United States must include coverage for mental health services. I also enjoyed watching him in action. This was true in part because Wellstone also focused on staying physically fit. Even with MS, he was muscular and was not above showing off his push ups.
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 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.
When all is said and done, heroes do not sit around and grieve on and on. Instead, they get determined. I personally did some grieving after I was diagnosed myself and accomplished nothing thereby except making a fool of myself. Instead of sitting around feeling sorry for myself, I could have been out having some fun and living a determined life. I certainly hope others manage to avoid this same mistake. My first neurologist made a determined effort to save me from this mistake (he even sent me to a psychologist) but nothing would dissuade me from my folly.
I could list here some of the many, many studies show that diet changes, physical exercise and intellectual stimulation are crucial in beating MS. Instead of doing that, however, I want to point out that 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. At my most depressed times, I have read Roosevelt biographies and always found them helpful.
- 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. One can hardly disagree although I must admit to some cheating myself — more so when I was younger. I promise I am now much improved — especially now that I have given up my silly grieving!
As the writer of the Intelligent Person’s Guide to Beating MS, I know that others probably expect me to point out that following the advice I’ve written here will make you look drop dead gorgeous too. Indeed it will! Roosevelt, Jordan and Wellstone all looked quite dapper and could easily attract crowds in their days (of course, styles do change). We would all do well to follow much of their fine examples.
Our hero, George Jelinek, is, of course, an excellent role model too. Naturally he looks drop dead gorgeous. And he lives boldly and with determination. Many who have met Jelinek comment about his faithfulness to a healthy life style and his totally good looks. Julie Calder, who tells her story on my web site, is another good model – her life shows what some determination and life style changes can do in creating good health and producing a totally cute person. As for me, I am the reformed fool. Try to follow my good examples but not my folly.
Viva la healthy living and determination! And don’t forget the healthy life style that beats MS also makes you look your best. Move over Brad Pitt and Angelina Jolie.
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?
Please let me know if you find my blog helpful. Please add a comment. What did you like? What would you like added? Thanks! Together we can change the way the world views MS. Please also join the Intelligent Guide to MS page on Facebook. I will use that page to make timely posts on new research and other issues likely to be of interest to others.
Please remember to consult your with doctors about how to stay as healthy as possible. Nothing here should be interpreted as medical advice. Instead, please use the information you find here in your discussions with your doctor.
Copyright 2010 Rebecca Hoover