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. When my primary care physician (who understands my condition and medication problems) sends me off to a specialist who knows little about my disease, I find the specialist tries to take me off my meds or add meds that I cannot take. Plus the specialist tries to do tests that may be dangerous to my condition. How can I explain to the specialist (without appearing uncooperative) that I don't want to risk worsening my condition by being taken off my meds, or being given meds I am sensitive to?

A. I think we have all been in a situation where our word is not good enough for a doctor, and we feel almost in need of "back up" from our primary care doctor, or even witnesses to convince him we are stating the truth. It is a hard position to be in, and because he is supposed to be an "expert", many patients question themselves. After all, if this doctor who has been trained in medicine ignores our illness, then maybe we are blowing things out of proportion? This is one of many self-doubting thoughts that we may feel.

You are your best advocate. The most important job you have in dealing with your own chronic illness is to understand it and what triggers it. Therefore the medications that you cannot take and cannot go off of, are very important to know and understand. Spend some time with your primary care doctor going over this before seeing a specialist. Know your triggers, know your limitations and your doctor's understanding of your condition before seeing a specialist.

What I did in the above situation was to tell the specialist making the recommendations to run them by my primary care doctor in an email and see if that was ok with him; both the tests the specialist wanted to do as well as new medications that he suggested. Then I made an appointment with my primary care doctor to discuss the suggestions with him. It takes a little longer than most consultations with a specialist, and doesn't work in all situations, especially emergencies, but it works generally. This is one way of avoiding "being caught in between" the specialist and your PCP.

A note from the Doctor's point of view: This one is tough for which to give a simple answer. Perhaps ask the primary care physician to send a brief introductory letter to the specialist describing your special problems, or you can describe them to the specialist as part of the consultation. If the specialist knows these issues but doesn't seem to care that is a different problem. In that case, you should tell your PCP you cant work with this specialist. -Joel S. Levine MD

Dear Frannie,
Q. When I am quiet about my symptoms, my family thinks I am well and coerces me to do more. How can I stress to them that this is not healthy for me and it pressures me to do things I cannot do?

A. Most of us are dealing with "periodic denial" regarding our illness. We get caught up at a time of low symptoms into thinking that perhaps we really aren't sick, and perhaps if we tried this, or tried that, we might be well. We take this denial and put it in the back of our heads...only to have it creep out at times when others try to push us.

I find that many times when I am with people who love me, I want to prove to myself that I can still do things. I have to fight this urge constantly. And because chronic illness can be invisible, the people we love sometimes forget what we are dealing with. They want us to be our "old selves" and do what we used to do. This suggestion gets caught up in the above denial and we then have a toxic combination.

Before you see friends or family that tend to be in denial about your illness, speak with them. Use a phone call or an email to suggest an activity that you can do. Remind them that your endurance is poor, and you should not or are unable to maintain an activity as you once did. Explain to them in a tactful way that you do not want to be pushed or shoved into an activity that you cannot do.

If your friend or family member still continues to push you even after your chat about your illness, it is time for a decision on your part. If you are constantly feeling pushed and shoved into situations that are hazardous to your health, this person is not thinking about you. For whatever reason, whether it is denial or disbelief, your friend or family member is not respecting you. Remember you are your own best advocate. You have to take care of you. And no one who cares about you or your welfare would want to keep you from doing that. Its time for another heart to heart.

When spontaneous activities come up, this is where you have to make your choice. If it is something that is dangerous for you to do and against doctors orders, do not attempt it. If it is something that may cause an increase in your symptoms, you may have to decide whether it is worth it to you. There have been many times when I traded a once in a lifetime experience for an increase in symptoms. But it was a very conscious decision on my part, and one I thought about for a long time. Decide along with your doctor what these things are.

Dear Frannie,
Q. There are a number of us who deal with (regularly) dr.s that don't want to hear (not just listen) our symptoms, concerns, fears, etc. It's an ongoing battle. For many of us it's not a question of finding a new dr. because many of us have no one left to see. Where do we go once we've reached this point? Its even been suggested by a few dr.s that perhaps a few of us should seek psychiatric physicians. Without the list servs many of us (myself included) would have no help at all. Where do we go from here?

A. My advice to the first part of the question is to go to a University Hospital, a Mayo clinic or to a doctor who has published material on your illness if there is one, if you are able to do that financially. Many University Hospitals have payment plans that you can arrange in order to see doctors there.

You mention in your letter there is "no one left to see." It is my personal belief that there is always another doctor to see, in a nearby town, or perhaps across the street. Never give up on finding the right doctor. The right doctor for you is there, it just may take time and it requires persistence in finding him or her.

And as I have mentioned in past columns, you are your doctor's employer. If a doctor is not doing what you need him or her to do, then it's time to find a new doctor. If a doctor is not believing you or treating you disrespectfully, you must find a doctor you have a better fit with.

However, I think we all have been there when we feel our doctor is questioning our symptoms, not believing they are real, or that we are genuine in our communication. It is that moment in time when we start to question ourselves, and if our illness really exists. Or if we have a firm diagnosis, where we may begin to question our doctors.

There is also a time that every one who has a chronic illness faces, and they want to turn away from the person who suggests it, asking themselves, am I suffering from a mental illness? Our first reactions can be self-doubt, or perhaps a feeling of anger and rage. Either way we are being told by a person or a doctor who does not know us, that they think we need emotional help.

I said in my book, there are times when we sometimes give our doctors too much power. If we allow someone who has spent ten minutes to evaluate our mental state, it is probably unfair. We need to consider this on one side of the coin, and possibly look a little bit closer at ourselves on the other.

The flip side of these thoughts is that depression is anger turned inward and it can be very sneaky. It is hard to adjust to chronic illness and many of us have been angry that we were chosen at random for this destiny.

Most of us have no experience with this before it hit us. Were we perhaps taken off guard? Do we need some help developing coping skills? Surely, who doesn't? Would an antidepressant medication maybe help us over some rough spots? My advice to you is to do what you need to do, to get through this time and work towards living your life once again.

Seeing a psychiatrist, if you decide this is necessary, is always a learning experience and it is no longer taboo. With chronic illness sometimes we have to take the help that is offered to us, especially during those "down times" when we think we will never feel better again. It doesn't mean we are mentally ill, it only means that we need some assistance. Where do you have a doctor who understands your illness and has great counseling skills all rolled into one? A psychiatrist is that kind of doctor who can understand the grieving process, help us through the rough spots, give us great advice, and medication if needed.

If you feel your doctor or friend is way off base and not taking your symptoms seriously, the answer is simple. Find a new doctor. If you feel you would benefit from the referral to a psychiatrist, try it....you might learn a lot about coping from it. Remember there is no place in our lives where we have been taught how to deal with the loss associated with having a chronic illness. Sometimes when we have little outside support, we do need help coping. The answer is up to you. What you do or don't do, is in your very own control. Remember that.

A note from the doctor's point of view: Another tough question. If resources and time are available perhaps a consultation at an outside clinic (e.g. Mayo) with advice back to the regular doctor might be helpful. -Joel S. Levine, MD

Joel S. Levine MD, is from University of Colorado Health Sciences Center, in Denver, Colorado. He is a Gastroenterologist and Internal Medicine doctor who deals with many patients with Chronic Illness. He is a great patient, family and medical advocate. I thank Dr Levine for this month's contribution.