How You Are Isn’t As Important As How You Feel

Posted on December 23, 2009 by Thomas Robinson

If you are reading my blog, chances are you have a chronic illness. And if I asked you how you are, you would likely tell me that you’re sick, that you’re having a flare, that you’re in pain, or something like that. Because I’m a life coach for people with chronic illnesses, I have asked many people that question and have gotten many answers similar to the ones I just mentioned.

But when I ask people with chronic illnesses how they feel, I get answers that aren’t at all the same or similar. Some people say they feel bad, depressed, upset, or sad, while others say that they feel good, positive, grateful, optimistic, and things like that. I find myself wondering why some people with chronic illnesses feel good while others don’t, and wondering even more about what those who feel those negative emotions can do to feel more of the positive ones.

Before I continue, I want to say that I don’t consider it to be a sign of weakness for a person to feel bad or sad when he or she has a chronic illness. Since having a chronic illness very often means 1) living with pain and fatigue, 2) not being able to things that we enjoy and used to be able to do, and 3) not being able to explain to others what living with our illness is like so they understand it, it’s completely understandable that a person with a chronic illness would feel depressed, upset, etc.

But even though feeling negative emotions is understandable, I have no doubt that most of us who live with a chronic illness would choose to FEEL better if we could. And the truth is that we can. There are many things we can do – so many that I could write a book. Actually, I am writing a book, and I’ll let you know when it’s available so you can get it if you want to.

In the meantime, here are a couple of ways you can FEEL better even though you have a chronic illness and aren’t well:

The first is to recognize that feelings, including negative ones, are transitory. They come and they can go, but only if we let them. One thing you can do is to imagine that you’re a house, and that feelings come in with the wind through an open window. If the window on the other side of the house is closed, the feelings will stay, but if you visualize yourself opening that other window, the feelings will pass through and leave.

The second way is not for everyone, but many of you will find it very helpful. That is to schedule a time each day for negative feelings – for example, from 2:00 until 2:15 every afternoon. If you notice yourself having negative feelings before that time, just set them aside until then. And any negative feelings after 2:15 are to be set aside until the following afternoon.

While these ideas won’t directly improve your health, they can be a great help in lifting your feelings. I will share more ideas in a later post. If you would like some suggestions for your own challenges, you can sign up for one of the limited number of no cost introductory “How to Have a Better Life” coaching sessions I offer.

I’ll close by saying Merry Christmas, Happy Chanukah, and Happy Holidays everyone!

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Have You Given Your Symptoms Names?

Posted on December 16, 2009 by Thomas Robinson

Have you named your illness symptoms? That may sound like an odd question, but there are some very good reasons for giving your symptoms names. One of them is this: when you give one of your symptoms a name, such as Gertrude or Elmer, you separate yourself from it. When you do that, you are much less likely to identify with it, which makes it possible to step back and see ways for dealing with it and managing its effects on your life that you otherwise couldn’t.

Here’s an example of what I mean: if you have a severe migraine, you may say to a friend or to yourself that you’ve been having awful migraine pain. But when you do this, you can easily feel like a victim. If instead, you tell your friend or yourself that “Sylvester” has been acting up and making himself felt, you don’t make it personal, so you are much less likely to feel like a victim.

A related benefit of naming your symptoms is that it allows you to communicate with them. You can write to them and tell them how they’ve affected your life, and you can tell them how you have felt, and continue to feel, with them them. When you do that, you will probably find that you feel a sense of relief and even freedom.

You can also talk to and even have a conversation with “Sherlock” or “Agnes” (or whatever you’ve named your symptoms). When you do, besides telling them how you feel about them, you can ask them if there is anything they want you to know. You can ask them what are the things you do and the situations that make them worse and you can ask them what changes you can make to lessen their severity and minimize their impact on your life.

You can learn about other ideas for living your best possible life when you have a chronic illness in my free report: “How to Have a Chronic Illness Without Letting it Have You.”

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Do You Have an Identity Crisis?

Posted on December 10, 2009 by Thomas Robinson

Many of the people I work with have told me that besides taking away some–or many-of the abilities they had when they were healthy, and besides bringing unpleasant and painful symptoms into their lives, their chronic illness caused them to question who they are.

Before their diagnosis, they saw themselves as competent, active, productive, and engaged partners, spouses, parents, and friends. Then they become ill and lots of things changed. They couldn’t do all the things they formerly could, and they often become dependent on others. Also, they sometimes grieved for the person they no longer were and wondered, sometimes for a long time, who the person was that they became.

If any of what I’ve described also applies to you, the first thing I will say is my mantra for everyone with a chronic illness: give yourself LOTS of compassion – compassion for yourself for any grief you have for the person you no longer are, as well as compassion for all the difficulties that having a chronic illness has brought into your life.

Here’s some information that may surprise you: there is another group of people who often go through identity crises when their lives change. I learned from a prominent chronic pain doctor, who has a revolutionary method for treating certain kinds of chronic pain, that many of his patients resist getting well. They resist because they have gotten used to, and have identified with, being a person with chronic pain. This doctor has found that his patients usually need lots of counseling or therapy in addition to the treatments he gives them.

From the stories that doctor told about his patients, it’s clear to me that people have a hard time, i.e., an identity crisis, when their life circumstances and their roles change. But I’ve learned, both from my own life and from working with my clients, that our true identity goes much deeper than our being healthy or sick, being “productive” or disabled (I put quotes around the word productive because I think it’s a quality that is often overrated), or being self sufficient or dependent on others.

But changes in our lives and circumstances, such as having a chronic illness, give us an opportunity to examine our identity that we otherwise wouldn’t have. For example, we often discover more compassion for others within us than we realized was there. We may discover that the things that are important to us are different from what we thought they were.

I could say a lot more about the identity crisis that many go through when they have a chronic illness, but for now I’ll close by saying that I would love to get your thoughts and experiences about any self-identity struggles and changes you’ve had since you’ve had a chronic illness. If you go to share your self identity thoughts, I will include your comments in later post about this topic.

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How to Love Yourself When You Have a Chronic Illness – Part 2

Posted on November 23, 2009 by Thomas Robinson

Last spring I wrote a post I called “How to Love Yourself When You Have a Chronic Illness.” In it I included a letter I had written to Richard M. Cohen, an author and award-winning journalist, in response to an article he had written for O – The Oprah Magazine. In his article, Cohen, who has had multiple sclerosis for 25 years and has had colon cancer twice, wrote that what he sees in the mirror disturbs him (I’m sure because of how having MS has changed how he looks), that he will never love himself, and that the idea of self-love seems mythical.

In my letter, I wrote that compassion is a form of love, and I suggested that Cohen give himself the same compassion that he would give to his wife or one of his children if they were facing the same serious health challenges that he is.

I reread that post recently and I saw that while my suggestion to Cohen was a good one, it didn’t go far enough. Here’s why:

Those of us with chronic illnesses deserve and need compassion, and I have found that my clients understand that and see that it makes sense to give themselves the same compassion they would give to someone they cared about who had a chronic illness.

But we also need and deserve to be loved. While we deserve compassion because of the challenges and pain we live with because of our illness, we deserve love (and need it) because we are human beings. Very few people love their children, parents, partners, or other loved ones any less if they (their children, parents, or partners) are diagnosed with a chronic illness. They don’t wonder if they are less deserving of love or less lovable. And you are not less deserving of love and no less lovable because you have a chronic illness.

So be as good to yourself as you would to someone you truly loved and give yourself lots and lots of loving and compassionate hugs.

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What would a knowledgeable person recommend that you do?

Posted on November 16, 2009 by Thomas Robinson

If you have been reading my posts for more than a few weeks, you’ve probably gotten a sense of my approach to how you can meet whatever challenges you have and you’re your best possible life. If you haven’t been reading my posts, I invite you to read some of them now so you can get a sense of my approach.

Once you have a sense of my approach to helping people meet their illness challenges, then whenever you find yourself struggling with your symptoms and concerns, you can ask yourself “What would Tom suggest?”

Or, if there is someone else you know who has given you helpful answers to problems that are similar to the ones you’re facing now, you can ask yourself what that person would suggest.

There is an interesting story that goes with this tip: I came across the idea many years ago while reading Geoff Bellman’s book, “The Consultant’s Calling: Bringing Who You Are to What You Do.” Geoff is a highly regarded organization development consultant. In his book, he tells a story about a client who had made a series of decisions in her job that had worked out very well, and she gave him the credit. She said that for each decision, she asked herself “what would Geoff suggest that I do?” In response, Geoff congratulated her, and then he let her know her decisions were actually better and more innovative than the suggestions he would have given if she had actually asked him for them.

Chances are good that you will come up with some really good ideas for dealing with whatever challenges you currently have, maybe even better than ideas I would give you.

For more ideas of things you can do to have a much better life when you have a chronic illness, sign up for my free report: Having a Chronic Illness is the Pits – Here’s How to Live Well Anyway. When you do, you will also get my bi-weekly “Tips For How to Have a Better Life When You Have a Chronic Illness” (from which you can unsubscribe at any time).

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Are You Holding Out?

Posted on November 10, 2009 by Thomas Robinson

Here’s a question for you: Do you want to get well? Of course you do. All of us living with chronic illnesses want to get well.

Now here’s another question: Are you holding out for getting well? Here’s a similar question: If you found a penny on the sidewalk, would you gratefully pick it up? Or would you keep walking until you found a $1 or maybe a $5 bill on the ground?

What I’m getting at is that none of us with chronic illnesses knows if or when we will be cured. Maybe a miraculous new treatment will be found next year, but maybe one won’t be found, or at least not in our lifetime. Maybe we will discover the combination of standard and alternative treatments that puts our disease into permanent remission – and maybe we won’t.

Don’t get me wrong. I am not criticizing your desire to get well. I completely support and encourage you to do everything you can to regain your full health.

But from coaching many people and from my own struggle with a chronic illness, I know that people often overlook small steps they can take and things they can do to make their lives better right away. They can be simple things like getting some new houseplants or playing your child’s favorite board game with him or her. Or you can reach out to people, maybe some you haven’t talked to in a while.

I encourage you to choose whatever works best for you. Just make sure you keep taking steps to make your life better. And for more ideas of things you can do, you can sign up for my free report: Having a Chronic Illness is the Pits – Here’s How to Live Well Anyway. When you do, you will also get my bi-weekly “Tips For How to Have a Better Life When You Have a Chronic Illness” (from which you can unsubscribe at any time).

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Highly recommended book: Cure Unknown: Inside the Lyme Epidemic

Posted on November 3, 2009 by Thomas Robinson

I send out bi-weekly tips for living well with a chronic illness to people who sign up for my free report, and for one of my October tips I wrote about a former client who had chronic fatigue syndrome. A woman wrote back to ask me to let my former client know about the book Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub. I did that and I also got the book myself, and have just finished reading it.

In the book, the author recounts her family’s harrowing ordeal with Lyme disease that began after their 1993 move from New York City to a nice house next to the woods about 50 miles away.

I highly recommend this book, especially if you have or know someone who has Lyme disease, chronic fatigue syndrome, fibromyalgia, lupus, Parkinson’s disease, or amyotrophic lateral sclerosis (Lou Gehrig’s disease). The author makes a very convincing case that Lyme and other tick-born diseases are often misdiagnosed as one of those other illnesses.

The following excerpt was especially eye-opening for me: “Even the campus green at Brown University, surrounded by city streets near downtown Providence, had Lyme ticks: One friend sitting on the green had pulled a tick from her leg only to find, a short time later, an erythema migrans* in that very spot. She later tested positive for Lyme disease.”

I have a friend who was diagnosed with lupus not long after she attended Brown about 25 years ago, so I couldn’t help but wonder when I read those two sentences if my friend’s lupus and other health problems are actually due to Lyme disease. I sent my friend an email with a brief summary of the book. If she decides to be tested for Lyme, I will write about her diagnosis, treatments, and results in future posts.

As the author describes the devastating symptoms, the progress, and the setbacks she, her husband, and their two sons experienced from Lyme and other tick-born illnesses, she makes it strikingly clear how serious and complex these diseases are. But what made the ordeal many times worse for them and countless others was the turf wars that continue to rage within the medical community. They pitted doctor against doctor and doctors against government agencies, and resulted in some doctors whom patients felt were the only ones treating their illness effectively either stopping treating Lyme patients or risking losing their medical licenses.

The author was able to cure her Lyme disease, and her husband eventually recovered and stayed relatively well as long as he continued to take his medication. At the time Weintraub completed the book, one of her sons had recovered, been re-infected, and had recovered again, and the other was finally regaining his health after being gravely ill. She had much more to say, but I don’t want to spoil the ending for you.

* Erythema migrans is the name given to the rash, frequently target like, that often appears after a person is bitten by an infected tick.

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Do You Feel Like You’re a Burden to Others?

Posted on October 29, 2009 by Thomas Robinson

When we have a chronic illness, it’s easy and very common to feel that we’re a burden to our partners and our families. We often need them to do many things for us that partners and family members of healthy people don’t need to do. At the same time, there are often things we can’t do with them that they and we wish we could do. So it’s no surprise that many of us feel like we’re a burden to others.

The good news is that there are several things you can do to counteract that feeling. The first is to frequently let others know how much you appreciate all the things they do for you. We can get caught up in our symptoms and pain and forget to do that, but when we remember, it makes a big difference for them because they know that they’re not being taken for granted. From time to time, you can show your partner or spouse that you are especially grateful for their help by getting a little gift or card and hiding it someplace where it will surprise them, like in a sock or lingerie drawer. You can do similar things for others who help you (although you may need to find a different hiding place 🙂 ).

Another thing you can do to counteract feeling like you’re a burden is to make sure you don’t dwell so much on your illness and symptoms that you ignore the other people in your life. Even though you may not be able to participate in all the activities with them that you and they wish you could, your caring, support and encouragement – including support and encouragement for them to balance taking care of you with taking care of themselves – can make a tremendous difference in their lives.

I wrote in this previous post about finding meaning in your life when you have a chronic illness. Doing that may not lessen the physical needs that you depend on others to meet, but can help you feel less emotionally dependent on them, which can also help counteract the feeling of being a burden.

Here’s one final suggestion: It really is a privilege for us as human beings to be able to serve others. Doing so fulfills us like nothing else can. So even though taking care of you and your needs may not be easy for your partner or spouse, family, and friends, they definitely get value from doing it.

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Something to do for yourself when you’re hurting

Posted on October 24, 2009 by Thomas Robinson

I’ve written many times about the benefits of being compassionate with yourself when you’re sick or not feeling well. While I haven’t written about it before, I also recommend that you do the same thing for any part or parts of your body that are hurting or not functioning the way they are supposed to.

When something hurts, like an inflamed joint or a head or stomach that aches, most people focus on it, wonder how long it will last and if it will ever get better, and worry about how they will do all their tasks and chores and get through the day with the pain they’re experiencing.

Until a few years ago, I did the same. But since then I’ve learned that both I and the part of me that hurts feel much better when I give it care and compassion. I do that by focusing my attention on my ailing body part, and then feeling compassion for it. I also gently and lovingly stroke it, or if it’s my stomach or something else I can’t stroke directly, I caress the skin that’s right above it. And if I’m hurting all over, I’ll give myself a compassionate hug.

In my experience, doing this doesn’t always make all the pain go away, but it virtually always lessens it. And besides having less pain, I also feel more peaceful afterward.

A little while ago I came across some fascinating corroboration of my results. In his book Quantum Healing, Deepak Chopra describes an experiment at Ohio University, in which rabbits were fed a very high cholesterol diet so their arteries would become blocked. The researchers were puzzled because one group of rabbits had 60 percent fewer symptoms than all the other groups. When they investigated further, they discovered that the anomaly was due to the fact that the student who was feeding those rabbits liked to fondle and pet them, so he held each rabbit lovingly for a few minutes before he gave it its food.

I hope you will give compassion and TLC to yourself whenever and wherever you hurt. And given the results of that rabbit experiment, you may want to also do so before each meal.

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When you get angry, be gentle and understanding – with yourself

Posted on October 20, 2009 by Thomas Robinson

I decided on today’s topic because of a conversation that took place recently in one of the online support groups I belong to. A woman I’ll call Carolyn wrote about her long, ongoing struggle to try to get disability insurance. She said she was very angry because she was being treated unfairly by the disability insurance system, especially compared to a relative of hers who was getting a much quicker response.

I don’t know Carolyn, but from what she shared about herself it seems clear to me that she qualifies for and should get disability insurance. I can easily empathize with her, not only because of her struggle to get the insurance, but because she lives in constant pain and shouldn’t have to go through all that additional stress. The fact that it’s well known that valid claims are routinely denied, especially the first time they are made, doesn’t make Carolyn’s-or anyone’s–experience of trying to get disability insurance any less trying and stressful.

Carolyn was denied not just once, but twice, so her anger is completely understandable and very probably justifiable as well. But I hope she follows it up with a lot of gentleness and compassion for herself (and I let her know that). When we get angry when we feel like we’ve been treated badly or unfairly, we often don’t realize that underneath that anger is a lot of emotional pain. And just as we give those we care about compassion when they have been emotionally hurt and are in emotional pain, we can do the same for ourselves.

Another person in the group told Carolyn to try to stay positive. That sounds good, but when we’re going through a hard time, neither I nor people I’ve talked about it with have been able do that for very long. And not only is giving ourselves compassion is much easier to do than staying positive, but it heals the emotional pain rather than just covering it up.

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