A Special Kind of Love – Part 2

Back in August I wrote a post I titled A Special Kind of Love, in which I described the special ways my mother took care of me during those times when I was sick as a child, and how as an adult I eventually learned to take care of myself the same way. Today I want to tell you another story about a mother’s love for her child.

A while back I was coaching a woman – I’ll call her Wendy – who was struggling with ulcerative colitis. I wanted Wendy to see that she needed and deserved lots of understanding and compassion from herself. Wendy is married and has a very young son. Like most mothers, she would do anything for her son to help him be happy and healthy.

Knowing that, I asked Wendy to imagine that her son had grown up and was in college. I also asked her to imagine that he was struggling with ulcerative colitis. After she took a minute and did that, I asked her what she would say and do. She said that she would hug her son and tell him that she would always love him, that she would always be there for him, and that she would do whatever it took to help and support him so that he could live well.

Hopefully Wendy’s son will never develop ulcerative colitis. But since Wendy has it and is struggling with the symptoms and challenges of living with it, she needs all the understanding, compassion, and support she can get. From her answer to my hypothetical question, Wendy realized much more than she did before that she has lots of understanding and compassion to give. I strongly encouraged her to give them to herself, because she needs and deserves them. And if you have a serious chronic illness, I strongly encourage you to do the same for yourself. You deserve it!

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Do you take better care of your pet than you do of yourself?

I have found, in my years as a chronic illness coach, that many people take better care of their pets than they do of themselves. For example, if their dog hurts its paw, most people will reassure it and sometimes even kiss the paw to “make it all better.” But if they stub their toe, they rarely give themselves any compassion and they often tell themselves how clumsy they are. And I know people who will take their pet to the vet when it’s in pain or if it needs a checkup, but minimize their own symptoms and pain, and not get any treatment for them.

Now, I have nothing against people taking care of their pets – quite the opposite. I love my dog and I don’t hesitate to take her to the vet whenever I think she needs to be seen. But you and I are at least as deserving of care and compassion as our dogs or cats are.

Here’s another way of looking at this issue: How would you feel if your spouse (or partner if you’re not married) always made sure your pet got the care it needed when it was hurt or sick, but ignored you when you needed care? I’m sure you would be angry and upset, and rightfully so.

If you take care of your pet when it’s not feeling well, but don’t take care of yourself when you’re not, you are essentially doing the same thing as your spouse was in the hypothetical situation I just described. Also, if you give your pet compassion and care but neglect yourself, you are sending yourself a message that you are not worthy of care and compassion. That message is not true, so don’t send it. Give yourself as much care and compassion as possible. You deserve it!

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How to always get the understanding and compassion you need

Today I’m going to share one of the strategies I give my clients with Crohn’s disease and other chronic illnesses to help them have much better lives. I also use this strategy myself – a lot.

Those of us with a chronic illness often find ourselves needing understanding and compassion. Sometimes we can get them from spouses, friends, and others. But there are times when those people aren’t able to give them to us. What can we do then? Before I answer that question I’m going to tell you a true story about what not to do:

A few years ago I was a volunteer host for an online Crohn’s and colitis support chat room. One day a man came into the chat room who was clearly very upset. Frank (as I’ll call him) had missed several days from work due to a flare-up of his Crohn’s disease. When he returned to work, his boss, who knew of his condition, didn’t express any concern or compassion for Frank at all. Instead, he chastised Frank for missing all those days of work.

That was hard on Frank, and he spent a lot of time in the chat room telling the rest of us how hurt and angry he was because of his boss’s uncaring behavior. He then came up with the idea of leaving his colonoscopy pictures on his boss’s desk – both as an act of retaliation and to have him see the error of his ways. I tried to tell Frank that that wasn’t a good idea, but he wasn’t listening all that well.

Clearly what Frank needed most was understanding and compassion. However, from the way he described the situation, the chance that he could get any from his boss ranged from slim to none. Instead of trying to get it from his boss, and feeling hurt and angry when he didn’t, what Frank needed to do was give himself the understanding and compassion he needed. And the same is true for us when we find ourselves with the same needs, and with spouses, partners, friends, colleagues, or bosses who for whatever the reason aren’t able to meet them.

It is ultimately is up to each of us to meet those needs for ourselves. This may seem difficult or even unnatural to do, but it doesn’t have to. Thinking about how we would treat someone we loved and cared about who wasn’t feeling well, such as a close friend, a spouse, or a child, and then treating ourselves the same way can go a long way to meeting our need for understanding and compassion.

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A Really Good Reason to Take Care or Yourself

Today I want to tell you how I think a verse from the New Testament applies to those of us with chronic illnesses. But before I do, let me say that it’s my intention that what I write about that verse is helpful to you whether or not you’re a Christian.

The verse is Matthew Chapter 25, verse 40. In the verses before that one, Jesus is talking to people who have fed the hungry, given water to the thirsty, and have visited the sick and those in prison. In verse 40 he tells them, “Inasmuch as you have done it unto one of the least of these my brethren, you have done it unto me.”

What he is saying is that taking care of those in need, i.e., those who are going through hard times, is more than a good deed – it’s a sacred act.

I couldn’t agree more.

But I also think it applies to us. So I think taking care of ourselves when we’re going through hard times is just as much of a sacred act as is taking care of others when they’re in need.

If what I’ve said makes sense to you, then you have a really good reason to take care of yourself when you have aren’t feeling well – so please do!

On the other hand, if you don’t agree with what I’ve written, please leave a comment telling me why and I will respond to it.

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I don’t believe in the word “incurable”

I don’t believe in the word incurable. I’ve even blacked it out of my dictionary. I want those of us with chronic illnesses to stop using it – and I especially want doctors to stop using it.

A few years ago, I read an article in an ezine about chronic illnesses in which a woman with lupus told how she asked her doctor if her condition would ever get better. She wrote that his reply, given with a sad look, was, “No I’m sorry, it won’t.” I got upset when I read that. I wanted to chastise both of them: the doctor for saying that, and the woman for believing him.

What doctors actually mean when they say an illness is incurable is that they haven’t found a cure for it – yet. But medical science is continually making advances which result in new, better, and more effective treatments for many diseases (I’m a beneficiary of medical science’s advances because infliximab, a new drug that was approved in the late 1990s, gave me my life back).

A doctor who says that a disease is incurable or that the patient’s symptoms will never get better is completely ignoring the very real possibility of a medical breakthrough. Also, although most doctors are reluctant to admit it, many of them have seen or know of one or more cases where patient’s symptoms got better or completely disappeared for reasons they couldn’t explain.

So like I said, I don’t believe in the word incurable. Even when my illness was at its worst, and I was so weak that I passed out from the exertion of taking a shower, I didn’t give up–although there were definitely times when I felt like doing so. Instead I did lots of research, and vowed that I would keep investigating and trying different standard and alternative treatments until I regained my health, no matter how long it took.

I’ll close by saying there are always ways you can improve your health and your life when you have a chronic illness. I wish you well on your journey to live your best possible life.

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Keeping Hope Alive

When life is difficult, as it often is when we have a chronic illness, one of the most important things that helps us keep going is hope for a better future. But given the many challenges, hardships, and disappointments we face, hope like that can be hard to come by. Fortunately, there are things you can do to make hope for a better future real – and then keep it alive.

Before I share some of those things with you, I want to first repeat the same advice I’ve written in many of my other posts and that I repeatedly give to my clients: give yourself LOTS of compassion for having to live with your illness and its symptoms. From my many years of experience coaching people with chronic illnesses and having one myself, I know without a doubt that it is one of the best things those of us with chronic illnesses can do for ourselves. And the suggestions I’m going to give you for keeping hope alive will work much better if you give yourself lots of compassion first.

I want to say one more thing before I give you my suggestions: not only is keeping hope alive good for our emotional health, it’s good for our physical health as well. Here’s why: People who live and contend with the symptoms of a serious illness often become angry and depressed, and being angry and depressed weakens the immune system. A weakened immune system leaves them more susceptible to flares and to other diseases.

Clearly eliminating illness-related depression and anger is important for maintaining and improving our physical health. And finding real hope for a better future is one of the most effective ways to do that.

My first suggestion for finding real hope for a better future and keeping it alive is to make a list of the good times and the successes you’ve had since your diagnosis. Maybe you had an especially enjoyable time with friends last week, got a new job last month, got married recently, heard an uplifting sermon at church, had a son or daughter graduate from high school or college last summer, had a new grandchild, or just saw a beautiful sunset. Just like everyone else, those of us with chronic illnesses have our special times, but because of our daily pain and struggles we often quickly forget about them. So start writing them down, and reread your list frequently. Doing that will remind you of those experiences and the good feelings that came with them, and will help you realize that even though you have an illness, you are still going to have more of those successes and good times in the future.

My next suggestion for making hope for a better future real and keeping it alive is to look for ways to regain control in your life. One of the worst aspects of having a chronic illness is the loss of control of our bodies and our lives the illness brings about. We often aren’t able to eat what we want, go where we want, hold the job we want, or engage in the activities we want to. The list of the things we can’t do can goes on and on, and we can easily dwell on the control we’ve lost. To make hope for a better future real and keep it alive, we need to find ways to regain control. Fortunately, total control isn’t necessary. Coaching clients, as well as studies I’ve read, have shown me that a little can go a long way.

So I suggest that you choose one small area of your life and take a small step to improve it. The step can be as small as buying a house plant for your home, getting earplugs so you can sleep better, or calling friensd you haven’t talked to in a while, and reconnecting with them. After you’ve done that, decide on and take another step, then another, and another. As you do, your hope will keep growing, and so too will the quality of your life.

My last suggestion for making hope for a better future real is to get involved in something bigger than yourself. Many people with a chronic illness–and I speak from personal experience as well as from my experience coaching others–spend too much of their time thinking about their illness. Of course we need to think about how to best treat our illness and how to live the best life possible, but when we dwell on our symptoms and how hard our lives are, we make our lives more difficult than they already are.

Instead of dwelling on your symptoms, I suggest that you look for ways to make the world a better place. Find a cause that’s important to you, such as cleaning up the environment, teaching illiterate adults to read, or helping to raise money to find a cure for your illness. Then participate regularly in whatever cause you are able. When you do, you’ll spend much less time dwelling on your symptoms and how hard your life is, and you will find you’re more hopeful about the future, and on top of that you will be making the world a better place.

These are some of my suggestions for how to make hope for a better future real and keep it alive when you have a chronic illness. I would love to hear about any that have worked well for you.

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Do You Think You Should Take Good Care of Yourself So You Can Take Better Care of Others?

Have you ever said or thought that you want to take better care of yourself so you can take better care of your family and other people you love? There have been many times when I’ve heard my clients and others with chronic illnesses say that, which is not surprising, because it’s become somewhat of an axiom in our culture. Well known life coach and author Cheryl Richardson states that “By taking care of ourselves, we can better care for those around us.”

My concern with the whole idea of taking care of ourselves so we can take care of others is that it implies that we need a justification for taking care of ourselves. We don’t. As a human being, you deserve the best care you can give yourself. You are no less deserving of that care if you don’t turn around and take care of or do good things for others.

Now don’t get me wrong. I think serving and doing good things for others is a good thing. It helps them and we feel better when we do. But when it comes to taking good care of ourselves, we don’t need any justification for doing that.

So please take very good care of yourself. You deserve it.

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Another way to benefit if you’re in an online support group

In this post, I’m going to describe a very different way to benefit from participating in on online support group. But first I will say a few words about them for those who have never joined one.

They are great places to connect with others who understand what it’s like to have your illness because they have it too. And the groups are also a great place to support others and receive support in return.

To find support group, go to yahoogroups.com or groups.google.com. There are literally thousands of them.

If you are someone who already participates in online support groups, here is a new and very different way to benefit from them: go through your group’s message archives and read your old posts. Read them not as you normally read things you’ve written, but the way you would if someone else wrote them.

Read them with empathy and compassion. Let yourself be deeply touched by the writer’s words and try to imagine what he or she was feeling, when he or she wrote each post.

If you were hurting a lot physically or emotionally when you wrote those posts, reading them may bring tears to your eyes. If they do, give yourself a big, comforting and compassionate hug, and keep reading.

From my own and my clients’ experience, I know you will find reading your old posts with empathy and compassion to be very healing – healing that you deserve!

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A Special Kind of Love

When you were sick as a child, I hope you were taken care of as well as I was when I got sick. I have fond memories of those days. They were very special because I got to stay home from school, lie on the couch in the living room, and read or watch TV as much as I wanted (game shows were my favorite). But what really made those days special was all the extra TLC my mother would give me  (TLC, as I’m sure you know, stands for tender loving care). She would bring me ice cream or chicken soup when I was hungry, something to drink when I was thirsty, and cover me with a blanket to keep me warm. And she would put her hand lovingly on my forehead to check my temperature and to let me know how much she cared about me and that she wanted me to feel better.

It took me many, many years as an adult to learn that whenever I got sick, I could give myself the same kind of TLC my mother gave me as a child. I went through serious illnesses like mononucleosis, many painful medical procedures, three surgeries, and my first 10 years of having Crohn’s disease without that knowledge. Obviously I survived, but I’ve often wondered how.

Taking care of myself  – when I’m sick or when my Crohn’s disease  is active – the way my mother took care of me when I was sick as a child is not a panacea. It doesn’t make everything “all better.” But I have no doubt that it has significantly lessened the duration of my illnesses and flares and it has greatly improved the quality of my life.

What about you? If you had the same positive experience of being taken care of when you were sick as a child as I did, I encourage you to give yourself that same kind of care whenever you need it. If you didn’t get that kind of care, please give yourself extra compassion today because you didn’t get it as a child, and then, every time you need it, give yourself the special kind of love that children – and adults too – deserve when they’re sick.

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How to Have a Meaningful Life When You Have a Chronic Illness

It usually seems to be the case that having a chronic illness diminishes our lives. From traveling to eating to working and playing, we feel limited by how much and for how long we can do the things we want to do. However, it is very possible – and it can be incredibly satisfying – to use our illnesses as a way to add to our lives, by making them more meaningful. In working with people with chronic illnesses for many years, I have observed that many of them already do that, and I’ve had the rewarding privilege of helping others do the same. In this article, I’m going to share with you some ways people with chronic illnesses have found to have more meaningful lives because of – rather than in spite of – having a chronic illness, and I’m also going to share my thoughts and suggestions for how you can do the same.

A couple of things many of my clients did that made their lives more meaningful were to be much more appreciative and grateful for their friends and family than they were before they became ill, and to take advantage of their illness-caused slower walking and moving through life speed to really appreciate the natural beauty around them – beauty they often hadn’t noticed before. If you are doing either or both of these, great! If not, what would your life be like if you did?

A simple but effective way to use your chronic illness to have a meaningful life is to just live the best you can. I don’t think most of us are aware of how much we can and do inspire others when we do that. Maybe it’s really hard for us to get out of bed and do all the things we need to do to take care of ourselves, our families, and get through each day, but we do so as well as we can without thinking that it’s anything special. But those who know how hard we struggle will often see what we do as an inspiring demonstration of courage and fortitude.

I’ve seen this in my brother’s marriage. His wife has multiple sclerosis and is in pain a lot of the time. It’s a major effort for her to get out of bed every day, but in spite of that she almost always has a cheerful disposition and a positive outlook on life – and because of that my brother refers to her as his heroine.

I also saw this kind of demonstration of courage and fortitude in a client I had several years ago, although at first he didn’t see it. He was worried that, because of his illness related limitations, he was being a poor father figure role model for his two young sons. He wanted to show them that a father is the breadwinner, that he helps around the house, and that he spends a lot of quality time playing and doing other things with his sons. But because of his illness, he couldn’t work and couldn’t spend much playtime or other time with his sons. There’s no question that his sons missed out on some quality father son time with their dad. But that fact notwithstanding, they saw their seriously ill father doing his best to be the best father he could be and living his life as well as he possibly could. By doing that, he was an excellent role model for them and I’m sure had a very positive impact on them as well.

My next suggestion for having a meaningful life when you have a chronic illness is to find ways to help others who also have chronic illnesses. One way to do that is to go to chronic illness support groups. Obviously the vast majority of people who go to support groups, both the live and online ones, do so to receive support. But you can go to them for a different reason: to share what you’ve learned about how to live the best life you can with others who want and need that knowledge. The people you help will almost always be very grateful and you will feel good for the difference you make in their lives.

Before I invite you to decide on how you will use your illness to bring more meaning into your life, I want to tell you about Zolisa, a woman who called me from London several years ago and told me her story. Zolisa, who acquired AIDS from her ex-husband, was an immigrant from South Africa.  In her culture, women were expected to acquiesce to their husbands’ demands for sex, even if doing so put their own health and lives at risk. Zolisa knew that she was not alone; she knew that other women who were also immigrants from South Africa were still following the established custom of acquiescing to their husbands. She decided that she had to do something to stop these women from becoming infected with AIDS, so she made it her mission to empower them to stand up to and say no to their husbands. She told me that doing that was very meaningful for her. In fact, it became so meaningful that she told me that even if it were possible for her to turn back the clock and to have never gotten AIDS in the first place, she would not do that.

Now it’s your turn. I invite you now to think about what you’ve learned from having your illness, what aspects of life are important to you, and with those in mind, decide on the best way for you to use your illness to bring more meaning into your life.

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