Dear Frannie,
Q. I am so sick and feel that I have nowhere to turn. Doctors don't know what is wrong with me and are cold to me. I fear I will be this way forever. What can I do? I can't live this way.

A. I sense from your question that you are feeling very helpless. Helplessness is a part of dealing with chronic illness for all of us. You are not alone in feeling this way. Being sick and feeling awful does not lend itself to much motivation. It is exhausting, scary and it is very easy to become paralyzed with fear. Frequently you are dealing with symptoms that need your attention, as well as reassuring family and friends, and not knowing how to take care of yourself. There are so many unknowns. What will make me better? What will make me worse? Will I die? Will I be like this forever? Will my spouse leave me? Will this test hurt me? How long will I have to wait before I find out what I have?

Early on in an illness it is important to have a support system. This should be made up of a family member, a friend, and a medical support person, your doctor. Try not to go through this alone. If you have to...ask for help. In early illness, the task ahead of you can become overwhelming. Isolate your job down into these five areas and work on each of them a little every day.

1. Define your family and friends who will support you. If family or friends would like to help you, let them. If not, ask. Use this energy toward healing.

2. If your insurance allows, find a doctor who believes in you, one who believes that you are worth saving. Work on finding a good doctor. If you do not believe your doctor is genuine or caring, find someone new. If one is not available, try the nearest University Hospital. Talk with this doctor, be objective, come prepared with a list, and at the end of your discussion take a moment to tell this doctor who you are, and who you want to be. Let him look into your eyes and see your uniqueness.

3. Take action. Taking action is the most important step in avoiding helplessness and depression. As long as you are doing something to help yourself, you will no longer feel so out of control. Go on the Internet and find others with your symptoms, learn about new doctors and new treatments.

4. Find the beauty in something every day. Beauty is harder to see when you are confused and scared, but it is there. When the sun is covered with clouds, even though you can't see it, it gives us light. Let something beautiful give you light during this confusing and overwhelming time. Go outside and stroll through the greenery for a moment. Smell the flowers in the breeze, feel the softness of a rose petal in your hand, use all your senses. Being alive is more than feeling well, it is feeling. You can still feel.

5. If you cannot handle this uncertainty, seek a professional. There is nothing wrong with seeking out a psychologist, or psychiatrist who will help you sort through your depression. There were times in my chronic illness where talking to someone outside of my situation was of of great help. And in some cases, medication may be offered to make this time easier for you. This is not the sign of failure. It is merely a way to cope. It does not mean our illness is emotionally based. We simply do what we must to get through these hard times. Once we make it through, we are glad that we did.

Dear Frannie,
Q. My new doctor does not seem to have knowledge of my illness. Should I see a new doctor?

A. Doctors are people, and some people are willing to learn new things and move on to a higher level. Some people are not, they are set in their ways and believe they have all the knowledge they need in order to do their job. I am sure you know both kinds of people, and the people who exist in between these two extremes. Doctors are people, and they can exist anywhere along these lines as well.

What was your doctor's reaction to your illness? Was he or she challenged by it? Were they skeptical of it? Did your doctor ask you questions, or was he or she quiet, keeping conversation to a minimum?
My friends with systemic mastocytosis, a very rare disorder, are in quite a pickle. It is said that one out of 8000 patients who go into a doctor's office have this disease. Therefore, there are not many doctors who have even seen a patient with SM. What is one with a rarer disease to do?

1. Ask your doctor if he or she has other patients with your disease.

2. If not, ask your doctor if he is comfortable with learning about it.

3. If the answer to the above question is no, ask your doctor kindly to refer you to someone who knows more about your disease.

4. If you are not satisfied with your doctor's response, and your insurance allows, it would be best to find a doctor you are more comfortable with.

5. You can find a new doctor by researching your disease online, joining a list serve, or finding a University Hospital close to your home. Most University Physicians are researchers at heart and interested in learning about new things and treating challenging conditions.

Dear Frannie,
Q. Every time I do something fun, I have a setback. The symptoms of my illness come and go, its hard to know how much I can do. Any advice?

A. From a psychologist's point of view, the hardest type of behavior to extinguish is called "intermittent reinforcement". This is when the stimulus is intermittent, or "sometimes" and becomes unpredictable to a person. When one doesnt know when to expect a thing to happen, the events before it happens are viewed as possible causes or effects.

Setbacks become intermittent reinforcement to a patient, unless they occur every time after the same stimuli. For example, if every time you have wine and cheese you get un upset stomach, you will consider either wine or cheese a trigger for your illness and avoid it. If every time you stay up late at night you have an exacerbation of your symptoms, you will learn that proper sleep patterns are essential to avoiding a setback. Staying up late will then be considered a trigger.

Because most of the time we do not know our triggers, we tend to think that what we were doing before the setback was the trigger. But this may not be so. It's hard to live life wondering if this is going to hurt us, or that is. Sometimes those of us who are fearful can get in the pattern of "waiting to live" instead of "living" their life. Those who deal with life-threatening setbacks must always obey their bodies and their doctor's orders. Taking risks in this case can be dangerous and life-threatening.

My advice to those of us who struggle with this but do not have life-threatening setbacks is:

1. Consult with your doctor and come up with a list of things that he or she feels you cannot do. Honor that list. Come up with another list of things you would like to do. Share with your doctor. With your doctor's agreement, these are the things that you try.
2. Start with activities that have worked for you. In trying new approved by doctor activities, build them slowly, one at a time. If you are unsure whether a new activity is a trigger, make a conscious decision if what you are about to do is something you will appreciate and remember as being very fun or worthwhile. You are taking a risk, but decide it is worth this risk.
3. Isolate true triggers. The more control you have over your disease, the easier it will be for you to decide what to do and what not to do. Keep records of sure triggers and avoid them. Separate the ones you are sure of from the ones you are not. Try the unsure ones again when you are ready to take the risk and document the results.
4. Come to a balance with your life. Learn how and when to live, and when to risk non-life threatening setbacks. If you are risking one, be conscious of making that decision. There are times when you are not strong enough physically or emotionally to risk a setback, make note of that and make your decision accordingly.

Stated best by Joel S. Levine MD, " The fear of a setback needs to be surmounted or accepted as part of your life. How you find this balance will be determined by what is inside you." Some of us can afford to take more risks than others, but we all want to live life.


Dear Frannie,
Q. Every day I ask myself- "Why did this happen to me?" I always took great care of myself. This just doesn't seem fair. Do you ever feel this way?

A. All of us dealing with chronic illness have asked ourselves and others this question. In fact it is said, we all go through a stage of acceptance in which this is asked. Finding the answer is different for each and every one of us. Some of us have hereditary illnesses, others have illness brought on by stress or physical trauma, still others have an illness due to gene mutations...and others have illnesses with unknown causes that are new to medical science.

It doesn't really matter the cause of your illness, this question is one of the purest questions an individual can ever ask. Why is my life chosen to face this type of adversity? Each and every one of us asks this in one way or another. And we may each one day come up with a different answer. For me, the answer was to gain the inner strength to reach out to others on their healing road.

What I have learned since the onset of my illness is that everyone on this earth has a basket of woe. Some hide theirs well enough to appear perfect on the outside, but they struggle alone on the inside. Others wear it on their sleeve and you know what they are dealing with all the time. And then there are those who share only with family and close friends the adversities they have to deal with. For whatever reasons, our struggle today is the one of having a chronic illness. And with it comes specific reactions from families and friends, and our own stigmas we place on it.

As my husband once told me....try to see your illness as an ocean wave to flow with. Waves break, and waves can grow high, but they always roll into the shore. Life has many waves for us to deal with, as does the mighty ocean. There is an old saying, by N. K. Rinpoche, "Remember this: whether or not you go with the flow, it always goes with you."

Our illnesses are one wave in the ocean of our lives. And even though some waves are bigger, more violent and uncomfortable inside, the ocean to some of us can become very beautiful. Overcoming adversity adds to the beauty of our lives. Our lives will have waves, but the waves will always roll in to shore.
So say this when you ask yourself the question of why this has happened to you...."It is one of the waves in the ocean of my life. And I will ride with it, til it carries me safely to the shore."