Doorways of Support and Inspiration:
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Nine Ways to Maximize Your Misery: The Don’ts of Chronic Illness (and How to Avoid Them)  Tom Robinson

 

The chronically ill can make themselves unnecessarily miserable, and in this article I’m going to tell you how. You will see the traps that the chronically ill can fall into, and by consciously avoiding them, you will be able to decrease your suffering dramatically. Below is a short course on what NOT TO DO:

 

1.  Be critical of yourself for having your illness, and for not being able to do those things in just the way you did them before. This is an effective misery maximizer because it builds on the sadness and anger you may already feel about having your disease.

 

If you want to maximize your happiness instead of your misery, here’s a little exercise that will help.  First, get a paper and pen and make a list of the negative or self-critical things you’ve said or thought in the last 24 hours. Whether it’s “I’ll never feel well again,” or “these people don’t care if I live or die,” write them all down. Next, pretend that a very close friend who has the same chronic illness you do and is suffering the same way you are is the one who said or thought those things you’ve written down. Now, for each item, ask yourself what you might say to him or her.

 

My guess is that you’ve come up with specific ideas for your friend on how to be kinder, gentler, and more forgiving to him/herself.  You might even have wanted to tell your friend how much you admire the ways he meets the challenges of living and dealing with chronic illness. What advice would you give your friend when s/he begins to feel so low, and so self-critical?  What are the remarkable ways in which your friend manages his/her illness?  Finally, be your own good friend, and say these things to yourself.

 

2. Find as many ways as you can to relinquish the control you have over your illness and your life. This is an especially useful misery maximizer for the chronically ill. Their illnesses almost always result in a loss of control over parts of themselves and their lives.

 

Retaining a sense of that control is one of the essential ingredients of emotional well being. A well-known study of people in convalescent hospitals by Drs. Ellen Langer and Judith Rodin demonstrated that relatively small differences in control--such as what kind of houseplant to have and which night to watch a movie--made a dramatic difference to the happiness, alertness, and longevity. The study can be usefully applied to the chronically ill. It shows how much difference each small increment in control can make to an overall sense of well-being. Fortunately, there are opportunities for gaining more control in our lives if we can only become aware of them.  Another exercise will help:  First, make a list of 10 decisions you make every day.  (Write down more if you like, so that you can see how much control you do have.)  Second, armed with that list as a good beginning, begin to add one or two new decisions each day.  Whether it’s choosing something simple like what to wear, or something weighty like which physician to see, the more control we are able to exercise in our lives the happier and emotionally healthier we’ll become. 

 

3. Don’t let yourself feel or express gratitude to anyone for anything. A recent study by Dr. Robert Emmons at the University of California, Davis showed that gratitude improves emotional and physical health. So to maximize our happiness instead of our misery, expressing gratitude for the things and the people in our lives can really help.

 

One short exercise is to write down ten (or more) things for which you feel grateful. Maybe they include a comfortable bed and a good night’s sleep, or maybe a cloudless blue sky, or eggs cooked the way you like them. People can go on your list too.

 

The next step is to express gratitude for each item--whether that means a silent “thank you” inside your head--or gratitude expressed out loud to another. Saying “thanks” keeps us human, and helps keep us happy and healthy.

 

4. Don't have a sense of humor. This is another effective misery maximizer. A sense of humor and an appreciation for the absurdities of the human condition aren’t just things to possess; they are resources to use. In this case the admonition to “use it or lose it” is absolutely true, especially with a chronic illness.

 

Take out that pen and paper once more for another exercise: Write down ten things about life with your illness that a kind-hearted comedian could make something of.  If you twist it just a little, even your adversity has a comic aspect to it.  Once you find it, use it to make yourself feel better, and manage that next challenge with a lighter approach. 

 

For an example, consider the adversity that Captain Al Haynes, pilot of United Airlines Flight 232, faced.  His plane was carrying 285 passengers when an engine came apart and disabled all three hydraulic systems, rendering the plane virtually uncontrollable. By heroic aeronautical skills the crew was able to erratically weave to the Sioux City, Iowa airport to attempt an emergency landing. The tower controller told Captain Haynes he was cleared to land on any runway. Haynes response was, “Oh, you want to be particular and make it a runway?”

 

Do your health a big favor, and…lighten up.

 

5. Don't take time for yourself. It’s easy to see how following this dictum is good for maximizing misery. In our culture, women, and especially mothers, have a head start in using this misery-making suggestion. They learn that everyone else comes first.

 

While it’s easy to see that following this dictum is good for maximizing misery, what’s often hard to see is the possibility of finding a way out, without being punished by others, or feeling guilty yourself.   Take out that paper and pen again: Write down 10 small things that you could do for yourself that make you feel better.  Now, we’re not talking trips to Italy here, or major life changes, so keep it small.  You want those things to be easily done without a lot of fuss.  Armed with your list, you can proceed to the next step: DO ONE SMALL THING A DAY TO MAKE YOURSELF FEEL BETTER.

 

6. Don't take responsibility for your medical care. Obviously if you don’t get good medical care you’re going to be sicker and more miserable than if you do. What’s not so obvious is how many things you can do to greatly increase the quality of the care you receive.

 

Our culture has traditionally held doctors in high esteem, even awe. For many people this view has obscured the fact that the usual customer satisfaction rules apply to doctors just as they do to other service providers. For example, we demand a certain level of both courtesy and competence from our mechanic, and if we don’t get it we find another. I’m not suggesting that we change doctors the first time we don’t like what they tell us, but as consumers we need to remember that we always have the right to find someone who will serve us better.

 

The other thing we can do to get better medical care is find out as much as we can about our disease, treatments for it, and the latest research on it. The internet is an extremely powerful tool that can help us do this, and I’m sure many of you have made good use of it. For those of you who haven’t, I strongly encourage you to do so. The links on the www.chronicillnesscoach.com web site are a great place to start.

 

7. Dwell on your illness day and night. If you’re chronically ill, this is one of the easiest ways to get seduced into misery. When you’re sick all the time, it’s hard not to think about your illness all the time. Setting yourself free from a preoccupation with illness is sometimes tough.

 

One method that can help comes from a modified Vipassana meditation technique: Uncap that pen, and list the recurring thoughts you have about your illness. Whether they’re thoughts of feeling sorry for yourself, thoughts that you’re no longer attractive, thoughts of being afraid about the future; whatever they are, write them down.

 

The next step is simple: every time you have one of those thoughts, just count it by making a tick mark next to it on your list. You get to decide for how long to keep counting the thoughts. I suggest 24 hours.

 

This technique does two valuable things. First, it lessens the negative effects of the thoughts because it helps you step back from the emotion associated with them. Second, it allows you to let go of those negative emotions. Over time what usually happens from this simple act of counting those thoughts is that they and their corresponding emotions come up much less frequently, and you find yourself feeling freer.  SO START COUNTING!

 

8. Isolate yourself. This is an especially good misery maximizer for several reasons. Isolating yourself makes it much easier to forget that no matter how serious your disease is, no matter how bad your symptoms are, there are always people who have it much worse. While knowing that won’t make your illness better, it will help put it in perspective.

 

RemedyFind.com is a web site that records people’s evaluations of the effectiveness of various treatments for different chronic illnesses. It shows that the top rated remedy for three of the most prevalent chronic illnesses--multiple sclerosis, lupus, and Crohn’s disease--was emotional support—the opposite of isolation. It got a higher rating than all of the drugs that are prescribed for those diseases.

 

The internet can be a great help in preventing isolation and getting emotional support. For example, the www.chronicillnesscoach.com  web site has links to several chat and email groups, where you can connect with others who have the same chronic illness challenges and concerns that you do. Also, many communities have support groups for people with chronic illnesses. Your community’s mental health association will know what those are.

 

9. Don't imagine a future beyond your illness. In order to have meaning, life has to be about more than just our immediate concerns.  This may seem obvious when we feel well and happy and able to look forward to something, but when we are ill, life narrows, and our vision grows weak and myopic.  Just when we need the future most, we tend to abandon it – and all the hope and excitement that can go with it.

 

Here is a final exercise to stop the tendency we have to narrow hopes and dreams: Write down ten (or more) things that you can look forward to doing in the future. They can be little things like a phone call to relatives, a planned outing, or that warm bath you’ve been wanting all day. They can also be bigger things such as activities that contribute to people and causes that are important to you--maybe cleaning up the environment, teaching reading to illiterate adults, or even taking part in finding a cure for your own illness.  After you’ve made the list, read it.  Think about those things that you are looking forward to and remind yourself that you could make a list of those big or little things every day.  And maybe that’s the thing to do for a week or so until you get the knack of looking forward. After all, futures are made; they don’t just happen.

 

While you’ve still got that list, you may want to think about writing down activities that contribute to people and causes that are important to you. You may feel strongly about cleaning up the environment, teaching reading to illiterate adults, or even taking part in finding a cure for your own illness. People who are able to do these kinds of things are making not just their own futures, but their communities’ as well.

 

You’ve now learned several exercises that can improve the quality of your life. These exercises are only one of the ways that you can overcome some of the debilitating effects of chronic illness, and stop cold that misery maximizing.  And that’s the secret, isn’t it:  To rob the illness of its power to shape your life.  Only you should have that power, and you can. 

 

Chronic Illness (CI) Coach Tom Robinson provides coaching for people suffering from chronic diseases, such as multiple sclerosis, diabetes, arthritis, Crohn’s disease, cancer, lupus, and ulcerative colitis, who want a better quality of life. Tom gives the chronically ill understanding, support, and encouragement to meet the challenges of their illness, start living more fulfilling lives and create the life they deserve—despite their illness.  He’s especially effective coaching them because, having Crohn’s disease himself, he knows firsthand the ordeal that living with a serious chronic illness can be. And he understands the standard and alternative medical systems, and knows how to find and get the best possible care and treatments. You can reach Tom either at tom@chronicillnesscoach.com or at 408-398-9422 or visit his website at http://www.chronicillnesscoach.com