You’re the Boss

Posted on March 16, 2010 by Thomas Robinson

Imagine this: You take your car to your mechanic because it has started making a strange noise. He listens to your short description of the new noise. He starts the engine and listens to it very briefly. Then, without asking for your approval, he tells you the repairs he’s going to make, tells you how much they are going to cost, and when he will do them. He gives you a form with a lot of fine print to sign and asks you for the keys.

If any mechanic treated you this way, you would either set him straight, or you would immediately walk out of the shop and look for a mechanic who explained the repairs he thought your car needed and why they were needed, and then asked for your approval before scheduling and making them.

We expect our mechanics to be straightforward and respectful, and to get our approval before they start to work on our cars because 1) we’re the customer, 2) we’re paying for the service, and 3) we – not our mechanic – will be using and relying on our car after the repairs are made.

The way I see it, the same principles and reasoning should apply to our interactions with our doctor. We’re the customer. We’re paying the bill (or if not, our insurance is and we’re paying the co-pays), and we, not our doctor, are the ones who will be using and relying on our bodies after the treatment is done.

Unfortunately, not all doctors are willing to acknowledge the fact that medical decisions are ultimately up to the patient. If yours isn’t, you may want to consider finding another one. I’ve had to do that myself more than once, including a time when I sent a letter describing the kind of doctor I was looking for to all 37 gastroenterologists within a 25 mile radius of where I lived (only two responded, but the one I ultimately chose was great).

I want to say here that I strongly prefer having a collaborative rather than a contentious relationship with my doctor. Doctors have had lots of training, and I want them on my medical team. But since it’s my body – and my life – I need to be the team leader.

For more ideas for living well, sign up for my Biweekly Tips For How to Have a Better Life When You Have a Chronic Illness.

Tom Robinson helps people suffering with chronic illnesses stop struggling, and then he helps them find true happiness and joy – even when they don’t think there’s any to be found.

This post is Tom’s March entry in the Health Activist Blog Carnival. If you’re interested in participating too, you can read all about it here:
http://blog.wegohealth.com/2010/03/new-health-activist-blog-carnival.html

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An Opportunity to Walk My Talk

Posted on March 10, 2010 by Thomas Robinson

I know I’ve been very fortunate, because I’ve had relatively good health for most of the time since I was diagnosed with Crohn’s disease. As I describe in the page about this blog, my symptoms kept getting worse and worse during the first three years after my 1996 diagnosis, but in 1999 I found the combination of standard and alternative treatments that put my Crohn’s into remission and gave me my life back. Since then I’ve had a few fairly mild flares, but I’ve been drug and pain free for almost four years.

Because I’ve been so fortunate health-wise, it’s been a long time since I have needed to practice the suggestions I write about. Now I know those suggestions are good ones, because many people have told me how helpful they’ve been. But last week I found out firsthand that there is a big difference between recommending them to a client or describing them in posts, and being in major pain from a flare-up and struggling to do my best to use them.

The flare happened10 days ago and it turned my world upside down. After almost four years in remission, I had the mindset that for all intents and purposes I had beaten Crohn’s. But for some reason, some foods that hadn’t bothered me before (broccoli and almond cheese), triggered inflammation and spasms in the lower right side of my abdomen. While I can’t prove it, I’m convinced that the fragile emotional state I was in at the time was a major factor. But whatever the cause, all of a sudden I faced the same uncertain future that is all too common for people with chronic illnesses: would the pain lessen or would it get worse (it was a seven on a scale of one to ten, which was more than enough to keep me from getting much sleep that night)?

I did my best to follow my own advice, especially in giving myself lots of hugs and compassion. I would give myself a B+, maybe even an A- 🙂 I’m glad to say that my flare is almost completely behind me. But it was a great opportunity for me to use my own suggestions, and more than that it was a firsthand reminder of how truly difficult living with a chronic illness is for many people. I had a lot of compassion for you and them before; today I have even more.

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Give Your Partner What You Can – and Have Compassion for Yourself

Posted on February 27, 2010 by Thomas Robinson

I send out biweekly tips for how to have a better life when you have a chronic illness. I sent the following tip about three months ago. If you’re curious about why I’m posting my tip to my blog, you can skip to the end to find out – but I encourage you to read it first.

I know, from coaching clients as well as from my own experience, that it’s not uncommon for those of us with chronic illnesses to feel guilty because of how much help we often need from our partners.  We may also feel guilty because we can’t help them nearly as much as we could when we were healthy, and we can’t do all the things with them that we formerly could. If you sometimes feel this kind of guilt, here are some tips to help you lessen or eliminate it.

First, please give yourself lots of compassion. Have compassion for the part of yourself that needs help, but isn’t able to do as much for your partner as you want to because of your illness. Also have compassion for that part of yourself that feels guilty. They both deserve all the compassion you can give them, and lots of hugs too. I recommend that you give them at least three compassionate hugs a day.

Second, be sure to let your partner know how grateful you are for all the help he or she gives you. Everyone – including your partner – feels good when they do things that other people appreciate, so expressing your appreciation can more than offset the time and energy your puts into helping you.

And third, look for ways that you can give back your partner. Those ways can be as simple as giving your him or her a little more listening and understanding when they’ve had a hard day at work, renting a movie they’ve wanted to watch, or just rubbing their shoulders.

I hope you found this helpful. And now I see some shoulders nearby that could use some rubbing and a gentle massage.

This post is my entry in February’s Health Activist Blog Carnival. If you’re interested in participating too, you can read all about it here: http://blog.wegohealth.com/2010/02/introducing-health-activist-blog.html.

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Is Having Hope Helpful?

Posted on February 21, 2010 by Thomas Robinson

About every other week I send a tip for how to have a better life when you have a chronic illness to the people in my list. In my last tip, I told my readers to imagine that their illness and symptoms were never going to get better – that they would be the same tomorrow, next week, next month, and next year as they are today. I then asked them what they would do, given that they weren’t going to get any better, to get the most they could out of life.

The reason I had my readers imagine that they were never going to get better is because – and I learned this both from my own life and from my clients – many people with chronic illnesses put off doing things they would like to do. They do that because they keep hoping they will get better, making doing those things will be a lot easier. So my tip was basically for people to stop hoping and start doing, and many people wrote to tell me they found it very helpful.

That tip not withstanding, I actually think that it’s a good thing for us to have hope. I think it’s good for us to read about people who have had miraculous recoveries from chronic illnesses (and there are many credible stories describing that). I think following the latest research about chronic illness treatments, whether stem cell technology, a new biologic, or a completely new breakthrough, can give us hope for a better future and help us get through bad flares and other difficult times.

I did both: when my symptoms were awful I read about people who had recovered from Crohn’s disease, and I followed the latest treatments for it. And both gave me badly needed hope when I was struggling to get through each day. So there’s no question in my mind that having hope can be very helpful.  But what I’ve also learned, which I pass on to my clients and will pass on to you, is that we will have better lives if we don’t let hope that our illness will get better in the future keep us from doing things that, even though they may be hard to do, will bring us enjoyment today.

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Do Your Emotions Help or Hurt You as You Try to Live Your Best Possible Life?

Posted on February 7, 2010 by Thomas Robinson

I’ve known author and diabetes educator David Spero for several years, but I just recently discovered his diabetes self-management blog. I found his posts to be well written, and very helpful and informative – not just for people with diabetes, but for anyone with a chronic illness. And some of the posts were provocative.

In a post he titled “Do Your Emotions Help or Hurt You?,” David wrote about getting together with Mark, a friend of his who had AIDS and had nearly died from it but had regained his health and was doing well. David quoted something Mark said in their conversation, which was, “I learned not to pay attention to my emotions. I learned that emotions aren’t real. They’re just waves in your mind. They can get in the way of doing what you need to do. So if feelings can help me get from one place to another, I use them. If they’re in the way, I just let them go.”

David then described the ensuing discussion, in which he said that he trusted emotions more than thoughts and that we should put them to positive use, while Mark said that that if he kept going back to an emotion, like anger, that he was feeling, he would stay stuck.

David went on to say that he was beginning to think that Mark was right, that just as we are taught to notice thoughts and let them go while meditating, that we should just notice our emotions, try to understand what they are trying to tell us, and then let them go.

When I was growing up, there were far too many times when the painful and difficult emotions I felt were ignored, or if they weren’t ignored then I was often criticized for having them. That may be  at least part of the reason why I disagree with what Mark said, and why I don’t think David should have changed his view.

But Mark was right in realizing that it isn’t healthy to keep going back to an emotion. So what do we do? What I have discovered is that we need to acknowledge our difficult and painful emotions, and then let the part of ourselves that is having those emotions know that we have lots of empathy for it.

When we do that, that part of us knows it isn’t being dismissed or ignored. It feels reassured, and it lets go of the emotion without being forced to.

Having a chronic illness virtually always means experiencing difficult and painful emotions. I think they can be a big help in living your best possible life if you learn from them and have lots of empathy and compassion for yourself when you have them. What do you think?

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It’s Never Wrong To Be Upset Or Scared

Posted on January 29, 2010 by Thomas Robinson

Even though I have Crohn’s disease, I belong to support groups for people with other diseases. I joined them to learn more about what life is like for people who have different illnesses and also to give suggestions that I think will help others in the group. One group I belong to is for people with Still’s disease (Still’s is an inflammatory disease that can affect the joints, tissues, and organs).

A woman in the group  wrote that she had recently been diagnosed with Still’s. She said that she was familiar with that illness because a cousin whom she was close to had it for many years and died from it in his early 30’s.

Karen, as I’ll call her, wrote that some of her family members responded in a belittling way, saying that “Still’s is just a fancy name for plain old arthritis.” She said she felt hurt because those family members were dismissive of her year-long struggle to get a diagnosis for her night sweats, rashes, and crippling pain. (As an aside, “just plain old arthritis” can be very painful, and I would feel very hurt if I had it and didn’t get any compassion or understanding from my family.) Karen asked the others in the group if she was wrong for being upset and scared.

I hear that question from time to time from people with chronic illnesses, and my answer to Karen is always the same: No. Make that a very loud and clear NO!!

Having a chronic illness often makes our lives difficult and unpredictable, so it’s very understandable that a person who was diagnosed with one would become upset and scared. And given the fact that Karen’s cousin died from Still’s disease, I would be very surprised if she wasn’t scared when she learned she had the same illness he did.

So the answer to the question: Is it wrong to be upset and scared after being diagnosed with Still’s disease—or any other chronic illness—is no. But a much more important question for Karen to ask is: How do I deal with my feelings of being upset and afraid, and how do I take care of myself?

While she didn’t ask those questions directly, she asked for support from other members of the group, and she received several supportive replies. She was given the reassurance that Still’s disease is different for everyone who has it, so the fact that her cousin died from it was not an indication that she will too. She also received some good ideas for educating her non-supportive family members (who very  likely responded the way they did because of feelings of helplessness and discomfort that they weren’t aware of).

But one thing she didn’t receive were any suggestions to give herself lots of compassionate hugs because of all that she had gone through, because of how little understanding she got from her family, and because of how painful and difficult her symptoms were. I’ve seen “self-administered hugs” make a very big difference for lots and lots of people (as it has for me). So I hope Karen heeds my suggestion to do that. I hope you will too. And to learn about some other ways to take care of yourself when you have a chronic illness, I encourage you to read my free report: How to Have a Chronic Illness – Without Letting Your Chronic Illness Have You.

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Some Strategies For Dealing With Chronic Fatigue That I Wish I Had Known

Posted on January 20, 2010 by Thomas Robinson

Those of us who live with chronic illnesses can have many difficulties to deal with because of those illnesses. But I have found,  from my own life and from coaching and talking with others with chronic illnesses, that there are five main illness-related challenges, and most of us have to contend with one or more of them. These challenges aren’t independent of each other. On the contrary, they are all connected and inter-related. They are: chronic pain, chronic fatigue, lack of money, depression, and finding meaning in our lives. In this post, I’m going to share three strategies for dealing with one of those challenges: chronic fatigue.

The suggestions I’m going to share with you are ones I wish I had known when my chronic illness (Crohn’s disease) was in an almost constant flare, instead of being in remission like it is now. I often suffered from severe fatigue, and at that time I only knew three strategies for dealing with it. They were to nap in my car during my lunch hour at work, to get as much rest as possible on the weekends to recover from the previous week and get as ready as I could for the next one, and to learn about all the standard and alternative treatments for my illness and try the ones that seemed like they might help (I often spent two hours a day doing research on the internet).

Those were pretty good strategies, but if I had that period of my life to live over again, I would add three more that I think would have helped a lot. They are:

1) Look for and think about small things I could to make my life better. For example, I could have made a list of movies I wanted to watch, including comedies to cheer me up and uplifting ones to give me hope, and then watched them (while resting in bed, if necessary).

2) Keep a gratitude journal. Gratitude has been shown to to improve people’s health and their outlook on life. In spite of having overwhelming fatigue (and many other difficult symptoms), I had a lot to be grateful for, including a roof over my head, food on the table, a bed to sleep on, and a whole lot more.

3) Give myself lots of self compassion and hugs because of how difficult my life was (instead of spending a lot of my time dwelling on how sick I was).

As I said, I wish I had known these strategies when my life was a overwhelming struggle because of chronic fatigue and my other symptoms. But I’m very glad that they’ve been very helpful for my clients and others I’ve shared them with, and I hope you will find them helpful too. And if you would like even more strategies, I invite you to get and read my How to Have a Chronic Illness – Without Letting Your Chronic Illness Have You report.

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Do You Try To Be More Positive?

Posted on January 15, 2010 by Thomas Robinson

Last month, I asked the people in my How to Have a Better Life When You Have a Chronic Illness tips list what their three biggest challenges were and also what the three most important changes they would like to make were. Lots of them said their biggest challenges were their chronic pain and their other illness symptoms, and they said the change they wanted most was to not have those symptoms.

But a significant percentage of those who responded put down being more positive, happier, or more optimistic as either one of their three biggest challenges or as one of the three changes they would like to make. If you’re like them and would like to happier and more optimistic, keep reading, because I’m going to tell you how-and how not-to achieve that goal.

One of the most important things I have learned about becoming more positive and upbeat is that I can’t get there directly. What I mean is that trying to be more positive hasn’t worked well if at all, and whatever increase in happiness I achieve is quickly gone and forgotten when the next setback triggers my fears, or when I experience my next computer problem, etc.

However, if instead of trying to be happier, I give myself lots of compassion for those setbacks and problems, if I use my God-given gifts (and we all have them) to make a positive difference for other people, and if I make the time and take the time to do things I enjoy, the result is that I’m a whole lot happier.

You may be thinking that what I’ve written sounds good, but that your ability to help others and your ability to do the things you enjoy is greatly limited because of your illness. My response is that even if your ability is limited, I recommend that you still give my suggestion a try.

First, give yourself lots of compassion for the symptoms, pain, and limitations you have. Then make as much of a difference for others as you can, and do as much as you can for your own enjoyment. (Brainstorming helps here. When you do, you will probably come up with several ideas of things to do that never occurred to you before.)

If you follow my suggestion in spite of your limitations, you will find that there is what I call a sliding scale for happiness. What I mean is that you will experience as much happiness by doing as much as you are able to as a person without the limitations of a chronic illness will experience following the same suggestions as much as they are able to.

So I encourage you to try my suggestion, and don’t try to be more positive. I wish you much happiness.

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Are You Living a Double Life? If Not, Maybe You Should Be

Posted on January 8, 2010 by Thomas Robinson

Let me start by clarifying what I mean-and what I don’t mean–by the phrase “living a double life.” What I mean is to live two different kinds of lives at the same time. But I don’t mean to have a secret life that’s immoral or that you don’t tell other people about because they wouldn’t approve of it.

I don’t think that everyone who has a chronic illness would be better off living a double life. There are many people, especially those whose symptoms are not severe, who have constructed lives for themselves that are satisfying and fulfilling.

But there are also many for whom each day is a difficult and painful struggle, and for whom life feels like just existing instead of living. If you are one of them, I strongly encourage you to consider living a double life if you’re not already doing so.

The first life I encourage you to live is a life of doing all that you can to lessen your symptoms and improve your health. Learn as much as you can about standard and alternative treatments for your illness and decide with your healthcare provider which ones to try. Learn what new treatments are being developed – here’s a link to a short article about an easy way to do that from a short article in an ezine I used to write:  how to get google alerts. You may also want to do an internet search for people who have had unexpected improvements, remissions, and sometimes even cures from whatever illness you have. I have read many such stories that I have found to be credible, and reading them has given many including me lots of hope.

At the same time you are doing all those things to have a healthier future, I encourage you to look for as many ways as you can to have the best life possible with all the symptoms and circumstances you currently have. If you aren’t able to get out much, make a list of movies to rent, books to read, and friends to connect with. If you are limited financially, give yourself the challenge of finding at least five new ways each week to be more frugal. Get my free report: How to Have a Chronic Illness – Without Letting Your Chronic Illness Have You to learn some effective ways to be kinder and gentler to yourself. And if you aren’t getting all the support you would like, join or start an in person or a telephone support group for people with your illness. To live this second life as well as possible, you may find it helpful to think about what suggestions and encouragement you would give a good friend.

If you use both of these strategies to live a double life, you will be maximizing the likelihood you will get better, while at the same time you will be living the most satisfying and fulfilling life you can today and everyday.

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What small New Year’s Resolution Can You Make To Improve Your Life?

Posted on December 30, 2009 by Thomas Robinson

Those of us who have chronic illnesses usually want to change our lives in major ways. We want our pain to go away, we want to be able to eat a normal diet, and we want the fatigue to go away so that we have all the energy we used to have. In short, we want all of our symptoms to go away so can have the quality of life we had before we became ill.

Most people with chronic illnesses spend a lot of time thinking about all those changes we want, which is completely understandable since so many of us have symptoms that are very painful and difficult to live with.

But in doing that, we can-and often do-overlook the many small things we can do to improve the quality of our lives. And some of those small things can result in big improvements.

One experiment I’ve read about that was carried out many years ago made me realize the difference small things can make. Researchers Ellen Langer and Judith Rodin divided the residents of a nursing home into two groups, and introduced very small changes  into the lives of those in the experimental group. They were given the option of seeing a weekly movie and a choice of two nights on which to see it. They were given the choice about whether to see visitors in their rooms, the lounge, or outside, and they were given the responsibility of taking care of a houseplant. Only one change was introduced into the lives of those in the control group: they too were given houseplants, but they were told that nursing home staff people would take care of them.

The difference in the quality of life between the experimental group and the control group was dramatic. Those in the former were much happier, and their mortality rate for the 18 months following the experiment was half that of the other group.

The results of that experiment don’t mean you should stop wanting your illness to go into remission, but they do demonstrate that small changes can lead to big improvements.

Since the new year is only a few days away, I will leave you with this question: what small New Year’s Resolution do you want to make – and keep?

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