A life-raft, bridging the gaps between chronic illness, the world of medicine and life itself.

"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. I have a severe life threatening illness. How can I focus on getting better when my schedule is full all the time and I have to work for financial reasons along with raise my children and be a spouse? I feel I am drifting into disability because there is just too much required of me.

A. Frannie's point of view: It seems like you are asking many questions here.

1. You are asking about time management, how to fit all that you do into a day.
2. You are asking what adaptations you should make when you are ill to what you do.
3. And I am hearing you say that what you are doing now, is too much for you to do.

You must think of your personal goals. Some of my personal goals are to help others and contribute to society. Whether I contribute in a monetary way or in a spiritual way, should not matter in terms of my self -esteem and only matters in terms of financial considerations. Is your family dependent upon your income? If so, can you decrease the stress level of your job? Are you able to adapt your schedule to your illness without letting your co-workers down? Everyone has their own interpretation of this. Obviously food, shelter and clothing are our basic needs. Some may work to keep their health insurance. Others may continue to work in order to provide a college education for their children. Only you can make this decision.

For some with unpredictable symptoms or symptoms that make it impossible to sustain a workday, then the answer may be apparent. It may be time to cut your workload or stop working altogether. However try to work with your supervisor, and your doctor first. Communicate your concerns to them. Changing jobs, working part time or making job site changes might be the answer. Disability does not have to be your first or only answer.

You are saying that what you are doing now is not working for you. What might you eliminate or decrease in order to ease up your schedule? What changes are possible to make things easier for you? Sit down with your spouse or loved one and come up with a new schedule that might make a positive difference in your life.

However, you must build time into the schedule for you and your illness. You must have time to rest, eat well and time to take your medication. You must have time for your doctor appointments and time for exercise if it helps to make you stronger. Where a healthy person might get away with forgetting these things, you cannot. Or you will risk an exacerbation of your illness.

Some have to choose between being financially better off, and having quality of life. Some want to spend their good hours working and come home to sleep and rest. Others want to spend their quality time with loved ones instead of at work. Still others are too ill or do not have the consistency or endurance to work. This is a hard decision in many people's eyes. It is human nature in today's world to view our self-worth in terms of our productivity. Having chronic illness forces one to redefine not only what they believe is "quality of life" but also what factors into our own self-worth. This is something I recommend that you do before making any decisions.

A note from the doctor: There is no ‘medical’ point of view that makes sense here. Individuals make choices based upon lots of issues including the social ones mentioned here. I have seen patients going on disability who were helped by the rest, and others who became totally involved with their illness, gained weight, and I thought were not particularly helped by the rest. There is little evidence base from trials that supports either that rest and reflection help or that ‘work’ is detrimental. There are some interesting studies done by our army showing that soldiers with hepatitis (a fairly disabling disease) who were forced (literally) to work had no different recuperation than other soldiers with hepatitis who rested. Ultimately these are personal decisions that people make based upon a variety of inputs, needs, and concerns. There is no one right answer. -Joel S. Levine, MD

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

Dear Frannie,
Q. I am afraid. I am sick and I am alone. I cannot talk with my friends or family about how I feel. My spouse is in denial about my illness. Sometimes it feels as though life is not worth living anymore.

A. Have not all of us felt this at one time or another in our illness? We feel lost and alone and unable to communicate our feelings to others as well as be in touch with them ourselves. Everyone seems so out of reach to us. We tell ourselves, "no one understands how it feels" but in reality, have we reached out to others? Or are we shutting ourselves off from the rest of the world?

Firstly, look at your life. Are you alone? Or are there people in the background who are trying to get your attention, trying to get you to see that they are there? Look around you. Are you pushing people away because of your illness? Or are you celebrating the fact that they are there with you?

I can only speak from my own personal experience, but there are times when I felt more comfortable pushing caring people away. The fact that I needed them seemed to magnify my own weakness and lack of control. I didn't want to face this. And so, I controlled the only thing I had control over, and that was who I saw and contacted. My illness was out of control. My feelings were all over the place. My state of mind was like a roller coaster, one day sad, the next depressed and then next relieved. Nothing was predictable as my life as a well person used to be. I found myself cutting people out of my life, as this was the only true control I had.

I have spoken many times about having a support system. Start today by creating one, with a family person, a friend, and your medical support person, whether its a doctor or a nurse. These people will be the people that you rely upon, to share the good and the bad. They are there for you because they care about you. You must find a way to turn to them, and find a way to replenish them.

My husband, my dear friends and my doctor are my support system. I find a way to reach out to each of them on a frequent basis. My husband and I discuss a plan when things get especially difficult for me. We write down this plan, and carry it through because action helps to relieve anxiety. I reach out to friends on a daily basis. And I communicate with my doctor frequently through email. This isn't something that came easy to me. I had to take the initiative and speak with all these people about what I needed and how hard it was for me to ask for help. Not everyone complied, but those who wanted to be in my life, now smile and frown with me.

Why don't you start right away to make a list of people who have reached out to you? Create a support system that you can rely upon. Let each person know how much you appreciate their love and caring. Try in your own way, to add something unique to their lives, while not being afraid to be out of control and ask for their help. Having a chronic illness can leave you alone, and afraid to ask others for what you need.

Perhaps your husband's denial is a reflection of your need to keep to yourself. Have you shared your feelings with him? Try doing this and see if you find him receptive. Turn to the people who are there for you, and see what surprises they bring. Tell them what you need from them now in this scary time for you.

And if communicating your needs and wants to your support system still leaves you feeling alone and frightened, it is time to seek the support of a professional. Remember, as I have said in the past...counseling, seeing therapists, psychiatrists or other professionals is simply asking them for their help. It is not something to be shy or embarrassed of. Nor a failure that you are ashamed of. We were never taught coping mechanisms for a life that has been turned upside down. It is merely doing what needs to be done to get through this point in time and move onward and forward, living a meaningful life while coping with illness.

Dear Frannie,
Q. Can you tell me about hope? How can you be hopeful when you don't yet have a diagnosis and because of that, no one believes you?

A. I learned my most significant lesson about hope from my doctor, who I affectionately call "The Boss". I asked him about it one day when my life was way beyond my capabilities, and I felt myself drowning in the medical system. I hoped for an answer, a cure. He told me that hope is "elusive". And I have thought about that comment on a daily basis since that very day.

Yes, hope is elusive in that it is hard to catch, hard to grasp and hard to hold on to. And that is the most important task we with chronic illness have to do. We have to fish for hope every single day, and once we find even a tiny semblance of it, we need to hold on to it and never let go.

Finding the right doctor was hope for me as it may be for some of you. Having my doctor see me as a human being with unique needs and personality meant more to me than any fact I could obtain from the most knowledgeable scientist. Sharing with my doctor who I am, and what I want, as well as what I need, made it easier for him to help me. It made it easier for us to work as a team together, to find the answers that we were both looking for. This in turn opened me up to a new life of infinite possibilities. The treatments he has come up with because of his perseverance have made a difference in the quality of my life. This was the hope that I had dreamed about for all those years I spent searching for answers.

It may take time to find the right healers. Why should the first doctor you meet be the exact match for you and your chronic illness? Common sense tells us that we need time to realize all that we need from a doctor, and how to ask for it. It also tells us that a doctor needs time to get to know us and to establish mutual trust with the same goals in mind. Doctors are not Gods, they are people just like you and I.

I assure you, you will find your hope. And when you do, hold on to it like you would hold on to the string of a kite. You never know what the next gust of wind will bring. Believe in yourself, that you are worth saving, and others will believe in you. Let your newfound hope bring you the power to fly high.