Archive for January, 2010

It’s Never Wrong To Be Upset Or Scared

Friday, January 29th, 2010

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.

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

Wednesday, January 20th, 2010

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.

Do You Try To Be More Positive?

Friday, January 15th, 2010

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.

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

Friday, January 8th, 2010

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.