A life-raft, bridging the gaps between chronic illness, the medical system and living.

"May I be a guard for those who are protectorless . . . A guide for those who journey on the road. For those who wish to go across the watter . . . May I be a boat, a raft, a bridge." --Shantideva

Dear Frannie,
Q. My doctor is beginning a new treatment with me. It is somewhat experimental. How can I deal with the mixed feelings I have about this?

A. After being on many treatments over the past 15 or so years, I have learned a way to deal with it that seems to work. If it feels comfortable, try it if you would like:

1. Get as much information as you can about the new treatment from your doctor. Ask a lot of questions about what he hopes it will do for you, and also ask him to inform you of the potential side-effects. Discuss and agree on a trial period. Because many of you are sensitive to medications, this is important knowledge to you.
2. If necessary, quickly change your outlook. No matter what is on your mind, if the facts gel, and you decide to do the treatment, change your mental set. Look at the new medication as having infinite positive possibilities. For in our lives, there really are an infinite number of possibilities with every single choice that we make.
3. Tell yourself that this new medication may help you very much. Keep your sights on that fact. For if you never try it, you might never know the positive effects it might have.
4. Select a person to keep you going with it. It can be anyone in your support system: a husband, a wife, a friend, a significant other. Ask them no matter how you might waver in your thoughts, to support the treatment unless it becomes dangerous to you.. This way, if you are wondering if it is doing something bad, but unsure, and you want to prematurely stop the medication - you will be encouraged to stick with it for a fair trial period.

However, the most important thing to consider is to give time. Discuss this with your doctor. This is where you are both partners in healing.

Don't be afraid to try new things. Sometimes the good results don't show themselves until weeks later. For me, with my most important medication, it took 4 months before I saw obvious results and it made me better forever. Just think of what would have happened if I had only stayed on it a few days? I would have missed out on an important answer!

Dear Frannie,
Q. Please help me to know what to do about my doctor. He knows a lot about the illness, I can tell, and he did pat me on the shoulders a couple of times but he laid a lot of things on me for a first visit. I left there feeling really down, and definitely very very hopeless. I am sure he was just being truthful but it overwhelmed me. Basically he laid this horrible news on me, and left me to pick up the pieces. How can a human being do that? You say doctors are people, but I don't know of any people that literally can destroy your life in a single minute and walk away from you the next!

He is smart, and knowledgeable but I feel I don't trust him if he can be so heartless. Or is that just what doctors do? Help me, Frannie. I just don't know what to do.

A. Getting bad news is not easy. But getting bad news from a doctor who doesn't know us, can be very difficult.

Even though what your doctor told you is hard to deal with, doctors are people. They have feelings just as you and I. The only difference is that they must think objectively about your body and your condition, and they sometimes have to turn off the emotional part of themselves in order to do this. The best doctors are the ones who get to know us as people, can empathize, being caring and nurturing as well as objective. But not all doctors are able to do this, nor have the time.

If this is a doctor that you want to stick with, it is best to tell him what you need from him. Tell him how your last visit made you feel. Let him know that you need more kindness than he gave you. No one can argue with that, can they? Ask him if this is at all possible for him. You may get a dry yes or no answer, but then again, you may make him realize that the way he acted was upsetting to you.

I will say no more to explain the way a doctor thinks or acts. They have a hard job and giving bad news is never easy. To find the right fit with a doctor, is a time consuming process. But once you find someone caring and compassionate, you can let go, letting him care for you. This eases a tremendous amount of tension and stress in your life. It gives you more time, patience and energy to take care of yourself and find new meaning.

I am so very sorry that you received bad news. And I hope that you will find a way to re-energize your spirit through this process. It is possible to learn much on this journey, coming out the other side of it a more compassionate human being. Please let me know if there is anything I can do to help you. Sometimes even bad news can mean a new beginning or an opportunity for growth. I know that's hard to think of right now, but for many people, this can be true.

The doctor's response: It is always difficult to respond when you are only hearing one side of the conversation. I suppose I can only respond with a series of questions that might allow you to reflect on the visit. How much time did the doctor spend with you? If it was a lot of time then it was likely that he had to move on to other patients or they would be upset. If it was a brusque, curt visit then perhaps your perceptions were correct. What your expectations from the visit? A consultation? An ongoing relationship? Were these expectations made clear to your doctor? Mismatched expectations can lead to bad relationships.

I assume this was a first consultation, and you must have brought information from other physicians. Was he just confirming what others had said? Are you upset that the doctor gave bad news, that the news was bad, or that your doctor was truthful? Holding back on bad news never makes it better or easier to deal with for either the patient or physician. There is also the issue of trust. How can a patient trust me if I do not give them all of the information I have? -Joel S. Levine, MD, FACP Professor of Medicine and Interim HeadDivision of Gastroenterology-HepatologySenior Associate Dean for Clinical AffairsUniversity of Colorado School of Medicine

We thank you, Dr. Levine for your monthly contribution.

Dear Frannie,
Q. I have a problem that I hope you can assist with. My family is upset with me that I don't have "normal" friends and that all my friends have an illness. I tried to tell them that I can't keep up with my normal friends, that their lives have moved on. They are upset that I go on the Internet for support. They all think I should limit my "illness talk or complaints" to just a few minutes a day and then get on with the day and not mention it again. My family also wants to know why I "dwell" on the disease - that I should put it out of my mind and just forget about it. Obviously they have never felt the pain I feel. A little hard to just "forget". They are all upset because I am hurting and I know they just want the "old me" back, (SO DO I!) but they do not understand that there is no magic pill. am so tired of their comments that I am ready to cut out my family from my life--- and they are really my only support. I need your help in making them understand. Thanks.

A. The fact that you go on the Internet to get information and to find people with solutions is due to your strong intent to get well. What is wrong with having this intent? Nothing. What is wrong with going on the Internet to find out info? Nothing. What is wrong with finding friends like you? Nothing. Do you interfere in the kinds of friends they make? Do you say what their friends should have in common with them? Isn't making friends a very personal thing? Shouldn't you be able to make and choose your own friends?

These are inherent rights as an individual. With chronic illness you still have inherent rights and the freedoms to choose. An inherent right of one who is chronically ill is to try and get well, in any way you can. Isn't part of getting well trying to gather information? Find experts? Find treatments? Your family is uncomfortable and in denial with what is happening to you. This is not your problem...it is theirs. They need to make peace with the fact that your life has changed and will be changing. And they need to be there not to criticize you but to listen and to support you.

What would they be doing if they were ill? They could not tell you, because illness is something you have to experience chronically to know how you would feel or react. And what's the most important thing you learn from illness? Never to judge another for their unique way of walking down this road, because they are not in your shoes. Your family needs to get their heads out of the sand and help you- not stifle you by making you the way they want you to be, or making themselves more comfortable by continuing in their denial. This is unfair and unfeeling to you. I can tell you this: as long as you move forward to create the changes you need to make in your medical care and acceptance of illness, anything goes, unless it is hurting your or someone else.

What can you do to communicate this to them? My feeling is to find the kindest way to tell them how you feel:

1. Sit them down by telling them that you are a human being, with feelings and your are in great pain. Tell them you prefer to have them on your side by not adding stress to your life, fighting against you.
2. Tell them your plan to get to feeling better.
3. Let them know of ways in which they can help you, i.e. doing research with you, providing you with support when you need it, taking interest in your new treatments or possibilities, inspiring you to keep on going, even when you think you cannot.

This is the role of family. A number of you have written mentioning lack of support from families. This is sad but not foreign to me. My extended family has chosen this path as I detailed in Fixing Frannie. It takes time to accept and adjust to this. But time reminds us to move on with our lives, and overcome our obstacles with the strength and support that we do have. Sometimes, with difficult family dynamics we have to learn to heal without them. My immediate family and my doctor are my support system. Because of this, they know that sometimes I need them for things beyond what they usually are asked for. So far, they have come through for me, by inspiring me to make the best of life.

It apprears your family feels alienated by "llness talk", helpless because they cannot do anything to help you, and they feel the space between you growing. This is a reality for most who have chronic pain and illness. Though I am guessing it is not their conscious intent, they are doing this for themselves. Give them something to do to help, so they don't feel as helpless. Remind them that you still love them to help ease their feelings of alienation from you. Yes, you do need to have thoughts of other things in your life so that your health does not bring you down, but you also need to focus on your health in order to get well.

The reality however is this: Whether or not you find a cure - you will never be the "old you" again. Chronic illness and pain forever changes us. It teaches us about a side of ourselves and our loved ones that we have never before seen. We can use this new knowledge to bridge ourselves to more expanded horizons and a brighter outlook, or you can use it to separate you from the rest of the world. Its all in the way that you look at it. Its flip-side thinking. We have the opportunity to exercise flip-side thinking much in our lives. For example...when you go on a short walk...do you look out at the horizon/up at the sky? Or do you look down by your feet? What you see down by your feet is limited. When you look out and up at the sky, there are infinite possibilities.

One learns through chronic pain and illness that it is a process of building a "new you" - one that your family and husband does not yet know. This "new you" is a better you, a kinder, more compassionate you - a more flexible you. It is one who like the trees during a rainstorm, can dance and sway in the wind - not one who is inflexible, where the branches snap off one by one.

How can you build a new and better you? Perhaps now is a good time to become more spiritual. What is it that you are to learn from this? What challenges do you face? How will being alone on this path change you? Try reading about adversity and how others face it. Broaden your search to find meaning, not only to your illness but to all the adversities you will face in your life. You may not be able to do as much physically as you were used to - but in spirit you can soar high. I would be more than happy to give you suggestions. Use what you have in spirit, expand your soul, become wiser and more knowledgeable about what you face. Help others. Let your family decide whether or not to stay in the ring with you. In time either they will see you making the best of the situation, or time will come between you. Either way however, you will win.