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. How does one handle seeing a new doctor for the first time when you have already seen several and have the 'feeling' that they are looking at you as more of a "doctor hopper" or a difficult patient''?

A. This is a very good question. However, I think the first part of this involves how you are thinking of yourself.

It is important when you have not yet found the right doctor, to be kind to yourself. Degrading yourself, putting yourself down by calling yourself a "doctor hopper" or worse because of your lack of success does not help you or help a doctor to help you. If you go into a new doctor's office down on yourself because you are having to see yet another doctor, you will bring some of those feelings into the visit, perhaps even projecting your feelings for yourself onto this new doctor. This neither solves your problem or creates an opportunity for you to see this new doctor objectively.

Go into a new doctor candidate's office as a consumer. You have every right to find the right doctor for you. You are employing this professional. Your prime question is, "does this new doctor fit my needs right now?" It is really no different than when you want to employ any professional to do a service for you. Your history of failure with other doctors is not of interest here and should not be brought up during the visit. What is relevant to your visit is your past medical history, whether or not this new doctor candidate is open to treating someone with a chronic illness, whether this candidate is knowledgeable about your illness or willing to learn, and how the two of you mesh as people.

There is nothing wrong with a person who wants to find the right doctor. This is a right of the consumer and your inherent right as a person with a chronic illness. With many illnesses and chronic illness in general, it is hard to find a doctor who is willing to have a long-term, intensive relationship with a patient. Chronic illness brings about both of these things, a long term relationship and an intensive relationship. These are givens, and this is why many of us need to find the right doctor in order to begin to heal.

A Note From the doctors point of view: It is unclear whether we are talking about a new primary care doctor or a consultant. You could go to a doctor that is used to difficult cases; sometimes doctors in academic institutions seem more comfortable with this than others in the community. Try to stay focused during the initial interaction; having a typed history of the illness will help; as would a list of questions you might want answered. Also finding ‘just the right one’ may be impossible; something like looking for the perfect life partner. The pursuit of perfection may be an obstacle to finding the less than perfect but excellent doctor. -Joel S.Levine, MD

As always, I thank Dr. Levine from the University of Colorado Health Sciences Center, for his valuable contribution.

Dear Frannie,
Q. I heard somewhere that one of the most tiring, draining and debilitating experiences of our lives can be "living small" and that you can live big and do things simply, or you can live small and do everything in a grand way, so that you are like the "queen bee of the garbage dump". In the past decade, I have learned to survive by making my life small. Yet what has helped me to survive is now suffocating me. And I feel too sick and too tired to do anything about it. What can I do?

A. It is my belief that we are not given challenges that we cannot deal with. And so, this my dear is your challenge...how to live "small"

Chronic illness changes us. It changes our views and it changes our priorities. As I look back on the things that were important to me before my illness, I can see now how shallow they were. There is so much more to life than physically "doing". There are other dimensions of thinking, of feeling, loving, helping, learning, dreaming and meaning. We are capable of all these things, even with illness. Even on a smaller scale, or with a smaller amount of intensity, one can make their life meaningful for themselves and for others.

Physically, Chronic illness forces us to live in a box. This reality can tend make you feel trapped or challenged. However an important realization made me grow most as a human being in ways I never knew existed: the power to live from within, without as many external experiences...to be able to think and feel truly how I think and feel....to know what that truth is, to trust in that and learn in that.

Perhaps it is time for you to add a new dimension to your life. Can you add meaning to your life through books, friendships, family relationships, spirituality, religion or become more introspective? Our journey is so much more meaningful if we add new inner dimensions to our lives.

Dear Frannie,
Q. Everyone tells me that I look too healthy to be sick. What do I tell them?

A. This is something that all chronically ill patients have in common. For some reason, we all see it as a "put down" or that our illness is not "believed" by our friends or relatives who say these words to us.

But why? What do those words really mean? They simply mean we look healthy. They mean we look good to the person saying it. I suppose we can look beyond the words and see the feelings behind them. And we do. But are we projecting our own feelings about our illness, searching for diagnoses, going from doctor to doctor who may be a nonbeliever only to feel our friends are against us too? Is that what we read into these words?

Sometimes when we fight and fight and fight our illnesses, we don't realize that it's ok to put our weapons away, we are among friends. Our friend is telling us we look good to them. They are telling us that our illness hasn't taken away our glow, our attractiveness and that in visual ways, we are still the same to them. And it is also putting them in tune with one very obvious thing.....that even though we are healthy looking, somehow we became vulnerable to illness. This is scary for a healthy person to acknowledge, to see you look healthy and to be sick with an illness. If they stop and think about it, perhaps this could happen to them too.

What I choose to do is take it as a compliment. Ok, I look good...that's one less thing for me to worry about! What you don't take on, you have no need to react to. Let any perceived negative intent on the part of your friend disappear before it hits you. You have enough to deal with. Do not let your feelings of insecurity due to illness force you to react to your friend in an unkind way. One doesn't know what to say to a person with a chronic illness, until they have a chronic illness. We all know this to be part of our truth. Appreciate your friend's intent, and take it as a compliment.