When a person is first diagnosed with a serious illness, it can be quite stressful -- both for the person who is ill and for his or her family and friends. Likewise, when a pre-existing medical condition worsens, it can also be very difficult. Many questions and concerns rise to the surface. Practical questions include:

What should I do? Who can I talk to? Are there effective treatments?

Other concerns come to the fore as well, some of which have social or family ramifications. These concerns might include:

What will happen to me/us
How will I/we cope?
How can I get the medical help I need? The community assistance?
How will I get to my doctor appointments, chemotherapy, or radiation?
What questions should I ask my doctor? My insurance company? My family?
What about finances? And caregiving? Is help available?
Will I be able to work? Care for my children? Grandchildren? Spouce? Parents?
Will I need to move to another location, at least temporarily? Choose an alternate living situation? Make some changes in driving, daily activities, or meal preparation?
How about medical decision making? Do I need a living will? A power of attorney for health care?
Will I become a burden to my family and friends? Or an example?
Is there some way to grow through all this, to become spiritually stronger? To heal old wounds? To communicate more lovingly and effectively?

The aim of this Guide for Care and Support is to help you answer many of these questions, either directly or through resources made available through the guide. Clearly, no printed guide can answer every question or meet every need. Still, we hope to porvide you with at least some of hte information and resources you'll need to weather the tough days ahead.

Please know that you are in our thoughts and prayers.

Getting the information you need:

So, you've just been diagnosed. Or maybe your health, or that of a loved one has gradually worsened. You need more information on what to do next but are unsure how or where to get the information. Should you go to the library? Your doctors office? Or the Internet?

With so much on the table -- and such potentially momentous life changes in view -- it can be difficult to figure out what to do next. Obviously, the first order of business if you've just been diagnosed is to find out more about the illness, its' treatment, and how it might be expected to affect your life or the life of your loved one.

The Internet.

In this day and age, many people who have received the diagnosis of a serious or life-threatening illness turn first to the Internet. And while the web can be an excellent resource, it is no substitute for individual health care delivered personally by a physician or health care professional who knows you and is familiar with the particulars of your health.

At its best, the Internet can be used as a gateway for additional information, or to augment existing information. But be careful: more than one person has come away from surfing the net feeling even more overwhelmed and under-informed than when they started -- especially with a new diagnosis. One problem is the plethora of web sites dedicated to any number of illnesses and diseases. Some are quite good, both in the quality of the information they provide and the tone of the discussion. But some are the opposite: both inaccurate and depressing.

So whats a person to do?

Do a little self-check. Are you the kind of person who needs more information to feel better? And do you think the Internet is the best way for you to obtain that info? If so, 'have at it.' But be careful -- during times of stress, it is much harder to find the balance between 'just enough' information and 'way too much.' If in doubt, disconnect for awhile. Take a break and come back when you�re up for it.
Stick to known web resources. Stick with web resources with a reputation for accuracy and professionalism. Feel free to check out the Internet Resources for Seriously Ill on this web site. In addition, reputable medical web sites include: www.medlineplus.gov, www.mayoclinic.com,and www.healthwise.org.
It goes without saying that you need to be very careful about what personal and financial information you share on line. There are predators lurking there, as elsewhere. Having a serious illness can put you in a vulnerable circumstance. Some of these webs sites can leave you with the feeling of being 'exposed.'
Try your local library, medical center, or doctors office. Oftentimes these places have informational materials on specific kinds of illness, local community resources, and support groups.
Limit information gathering, at least to some degree, especially until you have a chance to meet with your physician, determine an accurate diagnosis and staging, and have at least an initial discussion concerning potential treatment options.

Support/Caregiving.

If you, or someone you love, has recently received such a diagnosis -- or if you have had the diagnosis for some time but your condition has recently worsened -- you know what a struggle it can be to cope. Changes wrought in your life, your body, your family can be devastating. It can be tough to 'give up control' over your daily schedule, in some circumstances over your very existence. Even tougher is to ask for or accept the help and support we need.
The truth is, most of us are more comfortable being the 'care-giver' than the 'care-receiver.' Sadly, in our 'modern' age, we tend to equate 'how important we are' with 'how much we can do.' In other words, all too often we seem to believe our worth is measured by the mere sum of our working functional parts.
We live as though we believe we are 'human doings' rather than 'human BEINGS.' We worry about becoming a 'burden.' We fear 'losing control.' In so doing, we loose sight of the wisdom handed on to us from generations past. This wisdom, more uncommon than it should be in our materialistic, control-focused culture, is based on living and giving 'the good beyond ourselves.' According to Saint Francis of Assisi, "it is in giving that we receive." But also, and perhaps more on point for those of us who have been diagnosed with a serious illness: "it is in receiving that we give."
Remember, those who know you and love you cannot control your disease. They cannot make you better by wishing it so. No doubt they feel helpless and worried. Allowing them the honor of participating in your care-giving does not make you a burden: It frees them of theirs.
So if you can, allow friends, relatives, and co-workers to receive as they give. The next time someone says: 'What can I do?' let them know exactly what they can do -- and how they can help themselves by helping you. You should know that many doctors agree: the most important treatment of any kind is loving and supportive care from family members and friends. Another helpful reminder to 'Just Say Yes' to help!
Please refer to the Table of Contents in this Guide to determine which sections might best meet your needs. And take a look at the 'Print and Take' forms in each section. Reprint them as needed.

Back to Table of Contents

Next page: Chapter 1: Effective Communication: Obtaining the Health Care Information You Need