National Invisible Chronic Illness Awareness Week

Suffered Enough?
Learn How to Create a Life You Truly Enjoy

Tom Robinson, M.A.
Chronic Illness Life Coach, Life Choices Life Changes

Tom knows firsthand how hard it is to live with a chronic illness: he's lived with Crohn's disease for the last 11 years. Like many others with chronic illnesses, he's confronted the difficulty of finding excellent medical care in a system that often seems dysfunctional and he's dealt with workplace hostility and discrimination against those wtih chronic
illnesses, as well as the struggle of just getting through each day.

Visit his web site | Free Report: "How to Have a Life Even Though You Have a Chronic Illness"

Suffered Enough?
Learn How to Create a Life You Truly Enjoy

Debbie: Welcome to the National Invisible Chronic Illness Awareness Week seminar. My name is Debbie, and I'll be your host/moderator for this hour. We will open in prayer; then our guest will present the topic, after which there will be a question and answer period, then I will close in prayer.

Let's pray...

Father God, we thank you for this chatroom and the wonders of technology that allow us to meet in here for this week of special seminars. We ask you to bless our speaker tonight and each one who is here. We ask that you will speak to us through him, and let all that we say and do will be pleasing in your sight. In Jesus' name, Amen.

Now, I'd like to introduce you to our speaker... Tom Robinson, M.A.,
Chronic Illness Life Coach, Life Choices Life Changes

Tom knows firsthand how hard it is to live with a chronic illness: he's lived with Crohn's disease for the last 11 years. Like many others with chronic illnesses, he's confronted the difficulty of finding excellent medical care in a system that often seems dysfunctional and he's dealt with workplace hostility and discrimination against those with chronic illnesses, as well as the struggle of just getting through each day.

Because of his experience, Tom genuinely understands and deeply empathizes with his clients. He helps and supports them in taking steps, sometimes big and sometimes small, to meet their challenges and begin creating lives they truly enjoy. He is very involved in his church: he sings in the choir, helps teach teenagers once a month, and also coaches the minister. You can visit Tom's website at: http://www.chronicillnesscoach.com/index-niciaw.html

His topic tonight is: How to Have a Life You Truly Enjoy Even Though You Have a Chronic Illness.

Welcome Tom. It is good to have you here. We're looking forward to hearing from you. I'll hand it over to you now…

Illness_Coach_Tom: Thank you, Debbie

I'll tell you a little more about myself-but just a little, because I went to spend as much time as possible giving you the information and tools you can use to create lives you truly enjoy, and answering your questions about how to do that.

As Debbie told you, I've had Crohn's disease for 11 years. For the first three years, my symptoms kept getting worse, no matter what treatments I tried. I was so sick and felt so awful that there were times when I felt like I'd be better off dead. I was very proactive in finding the best medical care providers and learning everything I could about Crohn's, including all of the standard and the many alternative treatments for it. I tried many of them and finally found a combination that put my Crohn's into remission, where it stayed for almost four years. Although my remission didn't last forever like I hoped it would, my symptoms since then have been manageable, for which I am very grateful.

I've been a coach for almost six years, and I work mostly with people with chronic illnesses. I help them stop suffering and start creating lives they truly enjoy. Enough about me. Now I want to talk about you and what you can do to stop suffering and start creating a life you truly enjoy.

I know that when you have a chronic illness, you want to get well. If you can't get completely well, then you want to get as well as you possibly can. And doing that will definitely help you have a better life. I help my clients get as well as they possibly can. But for most of them, that's turned out to not be the highest priority thing for them to do to start creating a life they truly enjoy.

The most important step for most of my client was to becoming emotionally healthy by changing their mindset / attitude. My guess is that the same is true for you. In just a minute, I'll tell you how I help them do that. First I want to tell you the four main life areas that I help my clients with. The first two I've already mentioned. They are:

1. Becoming emotionally healthy, i.e., having a healthy mindset or attitude

2. Getting as well as possible

And the last two areas of my clients' lives that I help them with so they can create lives they truly enjoy are:

3. Discovering and learning the best ways to manage your illness-related challenges

4. Finding or creating meaning and purpose in your life

Getting back to the four areas of life that I coach and that I'm going to tell you about, while I listed them separately and will talk about them separately, they are all connected to each other. Improvements in one area almost always improve the other three, and conversely, deterioration in any area can and often does make the others worse. That said, I consider becoming emotionally healthy, i.e., learning the right attitude--or mindset--to be the foundation for creating a life you truly love.

For one thing, as people become more emotionally healthy, they are usually able to find the best ways to deal with the challenges in the other areas of their lives. Also, from my own life and from working with my clients, I've learned that it's possible to have a life you truly love even if you have a chronic illness and your health is poor. But it's not possible to have that kind of life if you're not emotionally healthy.
That's why I tell people that emotional health is more important than physical health for those of us with chronic illnesses. It's the foundation for having a great life.

At this point, you may be having thoughts like:

"Hey Tom, the reason I'm depressed, angry, or emotionally upset is because of my illness!" Or…

"Who wouldn't have a hard time coping if their lives had been turned upside down, their dreams taken away, and they had to deal with ongoing pain and fatigue and the many other challenges that make living with a chronic illness such an ordeal?"

If you're having thoughts like those, I understand. It's normal to have them. But I have some bad news and some good news for you. Here's the bad news:

In the long run, anger and depression, no matter where they come from, are bad for us. They have been shown to weaken the immune system, so they can make you more susceptible to flares and to other diseases.

The good news is that recognizing that you are depressed and angry, is a very important and positive step. Once you recognize that you're angry or depressed because of your illness and all the changes and challenges it's brought about, you can start doing things that will lessen that anger and depression. So recognizing that you're angry or depressed is actually a good reason to congratulate yourself!
I'm going to give you several suggestions of possible things to do to help with anger and depression just a little later in my presentation.

But first I'm going to say something that you may find disturbing and even insulting. However, my reason for saying this is not be insulting, but have you think about ways to take care of yourself that you may not have thought of before. Here it is: what I've observed during my years of coaching people with chronic illnesses is that most of them have more compassion for their pets than they do for themselves.

Now there's nothing wrong with feeling compassion for our pets. Having compassion for them is a good thing. I'm a dog lover myself, and while I didn't "kiss it and make it all better" the few times my dog has gotten hurt, I did hold her and let her know I knew that she was in pain and scared. Then I comforted and reassured her. I bet that most of you have done the same. But how many of you have held yourselves when you're in pain, when your symptoms are bad, when your illness is flaring? Could I please have a show of hand? Can you hold them a little higher? I can't see them.. I'm kidding of course. Having an online presentation is great, because it's easy for people to attend. My guess is that few of you answered "yes" to my question. One of the things I suggest that my clients do is to literally hug themselves and say comforting things to themselves while they do that.

Hugging yourself can feel strange at first. And you may want to find a private place to do it. But I bet that if you do it everyday you're symptoms are bad, and everyday you feel overstressed or overwhelmed, that you'll notice such a difference that you want to keep doing it. Not everyone is aware of it, but the Bible tells us to be compassionate with ourselves. Now it doesn't say so directly, but the meaning is clear.

Here's why…
We all know the command to love our neighbor as ourselves. It's one of the most frequent commands in the Bible. It appears one time in the Old and eight times in the New Testament.
What is not mentioned in the Bible, but is clearly assumed, is that we are to love ourselves a lot. If we love ourselves very little, then the command to love our neighbors as ourselves would mean that we were supposed to love them very little. But that's obviously not what the Bible says we're supposed to do. We're supposed to love our neighbors a lot, so that means we're supposed to and need to love ourselves a lot.
If you look it up, you'll find that compassion is a form of love. So by giving ourselves a lot of compassion, we are doing what the Bible says to do.

As an aside-and I'm sure you know this--when we give ourselves a lot of love and compassion, we are able to give more love and compassion to others. But that's a subject for another talk.

I've given you a Biblical reason for giving yourself compassion. Now I'm going to give you a non-Biblical reason. I know from my own chronic illness experience, and from the coaching I've done, that many people with chronic illnesses feel guilty and get down on themselves for not being able to do all the things they could before. Things such as keep a clean house, do fun things with their children, work full time, and other things like that. If you've had those kinds of feelings, here's a different way of looking at your situation I think you'll find helpful.

Let me tell you about a baseball player who strikes out 25 times… in a row! Each time he strikes out, he gets down on himself and gets very angry at himself. And you can understand why he has all those negative thoughts and feelings. However, there's one thing I didn't tell you about this guy: he has a broken arm. But he still expects to bat as well as he did before he broke it. Given that information, his self criticism and self denigration aren't called for at all. What the guy needs to do is give himself a break!

The same principle applies to those of us with chronic illnesses. Just like the ballplayer with the broken arm, we need to have reasonable expectations of ourselves and be understanding of our limitations.

Here's one more reason for you to give yourself compassion and understanding: Another way of describing this aspect of emotional health is self-talk - that voice inside our heads that almost never stops.
Now instead of a ballplayer, imagine two children growing up in different families. In one family, whenever the child feels bad or gets sick, he's criticized and told that he's weak and inadequate, that he's not as good as other children. In contrast, whenever the child in the other family feels bad or gets sick, he's given empathy and understanding, extra hugs, and things like chicken soup to help him get well.

Everything else being equal, which child will be emotionally healthier by the time they're both grown up? Of course the second one will be. What I would like you to consider is that if we substitute our own self-talk for what each child's parents said to him when he felt sick or bad, the same principle applies to us. The more negative, i.e., critical, our self-talk, and the longer it goes on, the more emotionally unhealthy we become. Conversely, the more positive, i.e., compassionate and understanding our self-talk, the more emotionally healthy we become. So I strongly encourage my clients, and you, to use compassionate, understanding, positive self-talk!

I have just a few more things to say about self compassion and understanding before I move on to the next area of my talk. The first is you'll need to determine if you want to talk out loud to yourself. Some of my clients have found that it works better for them to do that. Others, like me, prefer talk to themselves silently. You'll also need to find what words work best for you. One sentence that I often say to myself for both physical and emotional pain is, "I'm really sorry you're hurting so much."

I want to say one final thing about understanding and compassion:
You deserve understanding and compassion! It takes time to learn to give them to yourself, and there will probably be times when you either forget or are not able to do so.
If that happens, I want you to give yourself understanding, compassion, and forgiveness rather than feeling bad or being critical of yourself for forgetting or not being able to always be compassionate with yourself.

That concludes the section of my presentation on self-compassion. If you have any questions, please send them to Debbie so that she can send them to me and I can answer them.

The next thing I want to talk about in the area of emotional health is detachment. When we have a chronic illness, we can and many of us do get so caught up in our disease and our struggle with it that we lose the ability to effectively take care of ourselves. When that happens, what's called for is detachment. When we stop identifying with our illness, we're much more able to see what our options are.

So how do you get detached from an illness when you live with it 24/7? There are lots of ways to do that. One of the things I do in my coaching is help my clients find the ways that work best for them. Some of them find it helpful to give their illness a name. Doing that helps them to see their illness as separate. It can also lighten things up tremendously. For example, if you named your lupus Fred, on days when you were having a flare, you could tell your friends and family that "Fred's being grumpy today!"

Others, especially those who are competitive types, pretend that they are competing in a new reality TV show. The goal of this show is to take care of yourself, physically and emotionally, better than your competitors take care of themselves (and each person who plays this game gets to decide how long their show is going to last).

Others get detached from their illness and the challenges that come with it by writing about their problems. But they write in the third person instead of in the first person. So if I was doing that-and I use this technique from time to time, instead of writing "I had a bad day today. My body ached from head to toe…" I would write "Tom had a bad day today. His body ached from head to toe…" Writing that way depersonalizes the situation, so that you can see it more objectively. As a result, you will very likely be able to think of new solutions to your challenges, ones that had never occurred to you before. As was stated in the presentation write-up, you get a no-cost 30-minute coaching session with me just for coming to this presentation. If you take me up on my offer-and I hope you will-I'll be glad to give you some other detachment ideas you can use.

My next emotional health improvement suggestion for you-which is described in more detail in my "How to Have a Life When You Have a Chronic Illness" report, is to look for ways to regain control, rather than dwelling on the control you've lost. Having a sense of control in our lives is necessary for emotional health. Unfortunately, having a serious chronic illness always results in losing control of parts of our lives.

What people with chronic illnesses often do is dwell on and get depressed about the control they've lost. Fortunately, there are always areas in our lives where we can get more control.

Here's just one of many possible example: if you have a vision problem, you can get software that magnifies text (and by the way, with most web browsers, you can increase the font size by holding the CTRL key and pressing the "+" key).

I want to say one more thing about having control. There is a very well known study that was conducted by Drs. Ellen Langer and Judith Rodin 30 years ago, which is still very relevant today. You can find it online by doing a Google search on their names.
What they found in their experiment was that adding a little control to people's lives brings about a very big improvement in both their emotional and physical health. So I encourage you to look for ways to add control back to your life.

I have just a few more suggestions for improving your emotional health, although if I had more time I could give you many more. The first is to be grateful for your many blessings. Sometimes that's hard to do when we have a chronic illness, so one of the first things I do with my clients is to them the assignment of listing at least three benefits they've gotten from having their illness. For some the assignment was a challenge, but they were all able to complete it. How about you? If you've never done that exercise, I suggest you give it a try.

While I'm on the subject of gratitude, here's something those of us with chronic illnesses can be grateful for: all the parts of our bodies that are working just the way they're supposed to! (instead of dwelling, like many of are prone to do, on the parts that are involved in our illness).

My last suggestion for improving your emotional health is to maintain a sense of humor. You may think it's not possible to do that. I promise you that it is - not all the time, but a lot more often than you think. Studies have shown that's possible to maintain a sense of humor in bad situations. And doing so, especially if you're able to laugh, has been proven to improve emotional health and improve the immune system as well!

Here's a true story about a man with cancer who was able to make wonderful use of humor. One of Glenn's testicles had become cancerous and was removed. He was given radiation treatment to kill any remaining cancer. When they were in bed together, at the end of a day during which he'd received a radiation treatment, Glenn's wife asked him how he was feeling. He told her he was feeling ok, but his skin was a little tender. She said she wanted to take a look and pulled back the bedspread to do so. She gasped in alarm at the green glow that came from under the blanket! What she didn't know, but soon found out, was that Glenn had hidden a green glow stick in bed with him. I hope that story inspires you to find some humor in your situation. I know if you do, you will improve your emotional health and probably your physical health as well.

That concludes the emotional health part of my talk. As I said earlier, I think it's the most important area of the four, which is why I gave you all those suggestions for improving your emotional health.

The next area of life that I help my clients with is getting as well as possible. Now I'm not a doctor, so I don't give treatment advice. What I do is strongly encourage my clients to take responsibility for their medical care. I encourage you to do the same by. You can do that by learning as much as you can about your illness. The internet is a wonderful tool for doing that. The internet can also help us keep up with the latest treatments for our illnesses. If you want to do that, just go to www.google.com/alerts and enter your illness and the word "treatment" (without the quotes) in the search term box. Then you'll get regular emails telling you about the latest treatments for your illness.

I have found that while some of my clients have excellent doctors, many of them tolerate ones who are rude, who don't listen to them, and who don't explain the treatments they prescribe. I remind my clients that they are the customers, and that their doctors are working for them. And I point out that they wouldn't go back to a mechanic who treated them that way. What I suggest my clients, is that if their doctor (I sometimes call them their body mechanic) is a potentially good one, but does one of the things I mentioned above, that my clients should politely tell him what my they need: to be listened to, to have their treatments explained, etc., If the doctor changes his (or her) behavior, great! But if not, then I suggest that my clients find a new one. I suggest that you too give a potentially good doctor another chance, and then find a new one if he or she doesn't give you what you need.

These are a few of my suggestions to help you get as well as you possible. If you would like, I'll give you some more during the question and answer part of my presentation. I can also give you some suggestions then for finding a really good doctor.

The next area I help my clients with is discovering and learning the best ways to manage their illness-related challenges. Not surprisingly, as they make improvements in their emotional health and as they get as well as possible, their illness related challenges lessen. I'm sure the same will be true for you.

Because they have different illnesses and because their situations are different, each of my clients has different challenges. Much of the time I'm able to offer a helpful suggestion. Other times I'll brainstorm with my clients and together we'll come up with some helpful ideas to manage their illness-related challenges. Since each of you has your own set of challenges, I'm going to defer giving you suggestions until the question and answer section of my presentation. Then I'll answer as many of your questions and give as many suggestions as I can.

The final area I help my clients with so they can start to create lives they truly enjoy finding or creating meaning and purpose in their lives. In order to truly enjoy it, our lives need to be about more than dealing with our illness and getting through the day.
I think God gave each of us special gifts and things we're passionate about, and that it's our job to discover those gifts, combine them with our passions, and use them to make the world a better place.

Sometimes those of us with a chronic illness find meaning and purpose by using our experience with our illness. When we live with an illness we gain understanding and compassion, and we can use those to support and teach others. One of my clients started a blog (which I'm sure most and maybe all of you know is like a journal or a diary on a webpage). She used it to let people know about healthcare problems and issues in our country, and to ask people to contact the government representatives and ask for change.

Here's another example of someone who used her illness experience to contribute to others: a woman from England called me up a couple of years ago. She had emigrated there from Africa, where she had gotten AIDS from her ex husband. She then made it her mission to educate and empower women in the black community in England so that they didn't unknowingly and helplessly contract AIDS from their husbands as she had.
She found her work and the connections she made with people so fulfilling, that she told me she wouldn't trade places with a healthy person if she were given the opportunity to do so. Hers is a wonderful and amazing story, and it shows us that our illnesses can be a blessing.

But I want you to know that when I answer your questions about this area of your lives, I'm somewhat handicapped online. That's because what helps me the most when I help my clients find meaning and purpose in their lives is to listen to the tone of their voice and amount of passion in it. I then help them zero in on what they're passionate about, and we figure out steps they can take to make use of that passion and their gifts to add meaning and purpose to their lives.

However, since this is an online presentation, I can't hear your voice, so I don't have that information. So my answers and suggestions may not be as insightful as they will be if you decide to have a no cost coaching session with me. But I'll do my best.

That concludes my presentation. In just a minute, I'll answer your questions.

But first I would like you to take just a few moments and give yourself all the understanding, compassion, and love that you can. And I encourage those of you who are by yourselves to hug yourselves while you're doing that.

Next I want to let you know that if you haven't done so, you can click on the link in the Invisible Illness website to get my free report, "How to Have a Life Even Though You Have a Chronic Illness." Doing that will also get you a free subscription to my ezine - "Have a Great Life: Perfect Health not Required."

Finally, if you would like a no-cost 30-minute coaching session with me, so that I can help you manage your challenges and start to create a life you truly enjoy, please send an email to me at coachingsession@chronicillnesscoach.com by no later than Saturday.

Thank you again for coming to my presentation. Blessings to all of you!

Lynnette: Everything you've said makes so much sense, however, in my case, I'm just plain tired of fighting. I fight every day to be able to function (such as get dressed, brush my teeth, my hair, etc), and there is no end in sight. I'm really wondering if the fight is even worth it anymore.

Illness_Coach_Tom: Lynnette, you don't need to keep fighting. But don't stop giving yourself tons of compassion and also, the more compassion you give yourself, the more your energy will come back.

bleu: What if I don't seem to feel passionate about anything?

Illness_Coach_Tom: Bleu, if you don't seem to feel passionate about anything, give yourself lots and lots of compassion for feeling that way.

cj_Encourage: When I stumble from being dizzy around people I say it's OK I'm just being a dizzy broad today.

Illness_Coach_Tom: That sounds like a good answer as long as you don't feel like you're putting yourself down

Any more questions? Sorry it's taking me awhile to get the hang of answering them

faithstrength: I feel like identifying with one's illness helps dedicate one to keep strong...why is it so important to avoid this habit?

Illness_Coach_Tom: Sometimes it may not be a problem. But, all of us with chronic illnesses are much more than our illness. It makes a big difference in the quality of our lives when we know that, in my experience. Can you say more about how it helps you?

cheryl: I am too low to even try right now. I just had to quit my job of ten yrs. SS denied me and I have been in a flare for about 2 yrs now. I have put on 40 pounds in a couple months. I have had to move in with my 71 yr old mom and I keep thinking if something happened to her I would be homeless right now, I don't even know where to begin to help myself I feel like my life is so out of control right now.

Illness_Coach_Tom: Cheryl, I wish I had a better answer for you. I hope you've reached out and keep reaching out to others, while you too give yourself tons of self compassion for what you're going through

p.j: I do the best I can, but it is never good enough. Everyone, including me - want the old me back. But she is gone for good. The 2 things I loved and did best in life, I am not able to do anymore - I've been sick 10 years, I fail to see anything good out of being sick, except I did get a more compassionate heart for others that are sick.

Illness_Coach_Tom: I think the one thing you got is quite a lot. There's no avoiding grieving when we lost important parts of who we were. If that happened to a friend, you would comfort and console her. I encourage you to do the same for yourself. And I'll keep you in my prayers

guest: You mentioned more ways of finding good doctors?

Illness_Coach_Tom: Yes, do a search for good doctors on Google. Also call up doctor's offices and ask the office person who the next best doctor is besides her boss. They usually know who the good and bad doctors are.

Schatze: Tom, thank you for your generous offer of a 30 minute session with you. Your presentation is very helpful. In nearly 25 years of managing pain, it has never occurred to me to be compassionate to myself.

Illness_Coach_Tom: Thanks for your comment. I'm very glad it helped you.

sewkaty: I'm bad about wanting to help others, making a commitment and then on that day, not being able to fulfill my obligation.

Illness_Coach_Tom: In my experience, we all want to do our best. When we let ourselves or others down, it's because we have a "wound" either physical or emotional. So, what's called for is self compassion and also apologizing to those we let down

cj_Encourage: I'm dealing with a lot of anger that God allowed me to be sick not only that-that my kids inherited one of my illnesses.

Illness_Coach_Tom: It's great to acknowledge that, cj. You can have a compassionate conversation with that angry part of yourself that's been hurt so badly, by what's happened to you and your kids. Doing that will help heal the pain and the anger.

MarthaL: I have trouble dealing with the ups and downs ... one day I might feel better and get going on a project or exercise regimen and then ...bam.. I cannot get back to it for a month or so.

Illness_Coach_Tom: Martha, I suggest that my clients plan ahead for their next flare. then when it comes, they've made written instructions for how they will take care of themselves

Carol: I guess we take ourselves too seriously often and we do not see how much God is giving us a chance to grow spiritually. I see people who are chronically ill, like me, as angels( well I am not for sure, but..) as I see such a difference in how loving and caring they are, as I have been here at Rest Ministries, I for one am glad for opportunity to be here and if not ill, would not even know about it.

Illness_Coach_Tom: What a wonderful insight, Carol

Ana: I like to say that my body has RA, but my mind and my soul don't. That has helped me very much to see other possibilities in my life.
Illness_Coach_Tom: Another wonderful insight. I'm learning from you as well as the other way around.

QuietSoul51: If you could only give someone one piece of advice ... what would it be?

Illness_Coach_Tom: Be good to yourself. Somehow my longer answer and explanation about why I would say that and who I wouldn't say that to got lost

faithstrength: How do we create a new identity after giving up that out of illness?

Illness_Coach_Tom: As you get emotionally healthy and as well as you can, and as you find meaning and purpose in your life, I think you'll find that an you'll get an identity without having to try to create one.

Debbie: Our hour is coming to a close. Thank you, Tom. You have given us a lot of good advice and plenty to think about.

I also want to thank all of you who participated in tonight's chat. Now, let's close in prayer...

Father, thank you for allowing Tom to share with us tonight, we thank you for his insight and helpful advice. We ask that you will be with him and all of us as we leave tonight. In Jesus' name, Amen.

faithstrength: amen!