A MAJOR PART OF BECOMING a self-manager is knowing when you need help and how to find help. When you seek help, you are not a victim of your condition. You are a good self-manager. Start by evaluating your condition—what you can do and what you want to do. You may find that there is a difference between what you can do and what you want to do (or have done). If so, it may be time to get help so that you can do the things that are most important to you.
As we begin to look for help, most of us start by asking family or friends. Sometimes this can be difficult. We are afraid that others will see us as weak. Sometimes our pride gets in the way. The truth is that most people want to be helpful but do not know how. Your job is to tell them what you need. Finding the right words to ask for help is discussed in Chapter 9. Unfortunately, some people either do not have family or close friends or cannot bring themselves to ask. Sometimes family or friends cannot offer all the help that is needed. Thankfully, we have another wonderful resource: our community.
Finding resources can be a little like a treasure hunt. As in a treasure hunt, creative thinking wins the game. Finding what you need may be as simple as looking in the telephone book and making a couple of phone calls or using the Internet. Other times it may take sleuthing. The community resource detective must find clues and follow them. Sometimes this means starting over when a clue leads to a dead end.
The first step is defining the problem and then deciding what you want. For example, suppose you find it difficult to prepare meals because standing for a long time is painful. After some thought, you decide that you want to continue cooking for yourself. You could do this if you could cook while sitting. Your treasure hunt is figuring out how to do this.
You look at kitchen stools and do not think this will work, so you decide that you need to redesign the kitchen. The hunt is on. Where can you find an architect or contractor who has experience in kitchen alterations for people with physical limitations? You need a starting point for your treasure hunt. The phone book has pages of ads and listings for architects and contractors. Some advertisers say they specialize in kitchens. None of the ads mention designing to accommodate physical limitations. So you must call and ask. After calling a few contractors, you come to realize that none are experienced in kitchens for the physically limited. Next you go to the Internet. You find a company that seems to be just what you need, but it is located more than 200 miles away.
Now what? You have a couple of choices. You can contact everyone listed until you find what you need. This could be time-consuming. And even if you find someone suitable, you would still have to check references.
Who else might have the information you need? Maybe someone who works with people with physical disabilities would know. This opens a long list of possibilities: occupational and physical therapists, medical supply stores, the Center for Independent Living, and voluntary organizations such as the Arthritis Foundation. You decide to ask a friend who is a physical therapist.
He does not have the answer but says, “Gosh, Jack So-and-So just had his kitchen remodeled to accommodate his wheelchair.” This is an excellent tip. Jack will almost certainly be able to give you the name of someone who does the kind of work you are seeking. He can also probably give you some ideas about the cost and hassle before you go any further. Unfortunately, though, Jack turns out to be not much help. Now what?
There are people in every community who are natural resources. These “naturals” or “connectors” seem to know everyone and everything about their community. They tend to be folks who have lived a long time in the community and have been closely involved in it. They are also natural problem solvers. The natural is the one that other people turn to for advice. This person always seems to be helpful. The natural could be a friend, a business associate, the mail carrier, your physician, your pet’s veterinarian, the checker at the corner grocery, the pharmacist, a bus or taxi driver, the school secretary, a real estate agent, the Chamber of Commerce receptionist, or the librarian. All you need to do is think of this person as an information resource. Sometimes the natural will taste the thrill of the hunt and, like a modern-day Sherlock Holmes, announce that “the game is afoot!” and promptly join you in your search. You ask the postman, and he tells you about a contractor whose wife uses a wheelchair. He knows this because the guy just did a great job on his kitchen. You call the contractor and find everything you need.
Let’s review the lessons from this example. The most important steps in finding the resources you need are these:
1. Identify the problem.
2. Identify what you want or need.
3. Look for resources in the phone book and on the Internet.
4. Ask friends, family, and neighbors for ideas.
5. Contact organizations that might deal with similar issues.
6. Identify and ask naturals.
One last note: the best sleuth follows several clues at the same time. This will save you lots of time and shorten the hunt. Watch out, though—once you get good at thinking about community resources creatively, you will become a natural in your own right!
Resources for Resources
When we need to find goods or services, there are certain resources we can call on. One resource often leads to another. The natural is one of those resources, but our community resource “detective’s kit” needs a variety of other useful tools.
The phone book and Internet search engines are the most frequently used tools. These are particularly helpful if you are looking for someone to hire. For most searches, this is where to start.
Organizations and Referral Services
Almost all communities have one or more information and referral services. Sometimes these are related to a geographic area such as a city or county. Other times they are specific to an age group, such as the Area Agency on Aging. Sometimes they are specific to a condition such as disability or sickle cell disease. There are several types of agencies that operate these services. Search under “United Way Information and Referral,” “Senior Information and Referral” (or “Area Agency on Aging” or “Council on Aging”), and “information and referral.” If you are using a phone book, be sure to check your county or city government listings. Once you have an information and referral telephone number, your searches will become much easier. These services maintain huge files of referral addresses and telephone numbers for just about any help you might need. Even if they don’t have the answer you seek, they will almost always be able to refer you to another agency.
Voluntary agencies such as the American Heart Association and the American Cancer Society are great resources. There are similar organizations in most other countries. These agencies, funded by contributions from individuals and from corporate sponsors, provide up-to-date information about your health problem, as well as support and direct services to people with the illness. They also fund research intended to help people live better with their illness and to someday lead to a cure. For a small fee, you can become a member of one of these organizations, entitling you to receive regular bulletins by mail or e-mail. You do not, however, have to be a member to qualify for their services; they are here to serve you. Many of these organizations have wonderful Web sites. In our new world of cyberspace, you can live in rural North Dakota and get help on the Web from the Arthritis Foundation in Victoria, Australia.
There are other organizations in your community offering information and referral services along with direct services. These include the local chapter of AARP (formerly known as the American Association of Retired Persons), senior centers, community centers, and religious social service agencies. These organizations offer information, classes, recreational opportunities, nutrition programs, legal and tax help, and social programs. There is probably a senior center or community center close to you. Your city government office or local librarian will know where such resources are, and the calendar section of your newspaper will usually have information about programs these organizations offer.
Most religious groups offer information and social services to persons who need it, either directly through the place of worship or through organizations such as the Council of Churches, Catholic Diocese, or Jewish Family Services. To get help from religious organizations, start with the local place of worship, which will help you or refer you to someone who can help you. You usually need not be a member of the congregation or even of the religion to receive help.
Call your local hospital, clinic, or health insurance plan, and ask for the social service department. Your doctor will also be aware of the physical and mental health services available in the health care organizations he or she is affiliated with.
Libraries
Your public library is a particularly good resource if you are looking for information about your chronic condition. Even if you think you are an excellent library detective, it’s a good idea to ask the reference librarian to make sure you haven’t overlooked something. These people see volumes of material cross their desks constantly and are knowledgeable about the community (they’re probably among the ranks of the local naturals). Even if you cannot get to the library, you can call or e-mail. Libraries are no longer just collections of books.
In addition to city or county libraries, there are other, more specialized health libraries. Ask your information and referral service if there is a health library in your community. Such libraries specialize in health-related resources, usually having a computerized database search service available along with the usual print, audiotape, and videotape materials. These libraries are usually maintained by nonprofit organizations and hospitals and will sometimes charge a small fee for use.
Universities and colleges also have libraries open to the public. By law, the regional “government documents” sections of these libraries must be open to the public at no charge. Government publications exist on just about any subject, and the health-related publications are particularly extensive. You can find everything from information on organic gardening to detailed nutritional recipes. The librarians are usually very helpful, and these publications represent “your tax dollars at work.”
If you are fortunate enough to have a medical school in your community, you may be able to use its medical library. This, however, is a place to go to for information rather than to look for help with tasks. Naturally, you can expect to find a great deal of information about disease and treatment at a medical library. Unless you have special knowledge about medicine, however, the detailed information you find in a medical library can be confusing and even frightening. Use medical libraries with care.
Books
Books can be useful (indeed, you are reading a book now!). Many disease-related books contain reading and resource lists, either at the ends of chapters or at the back of the book. These lists can be very helpful. We identify some books as resources at the ends of many of the chapters in this book.
Newspapers and Magazines
Your local newspaper, especially if you live in a smaller community, can be an excellent resource. Be sure to look in the calendar of events. Even if you are not interested in a particular featured event, calling the contact telephone number may help you find what you are looking for. Look in other logical places for news stories that might also be of interest, especially the pages around the calendar section or, if you are looking for an exercise program for people with your health problem, for example, in the sports and fitness section.
Sometimes you can find clues in the classified section. Look under “announcements,” “health,” or any other heading that seems promising. Review the index of classified headings, which is usually printed at the front of the section near the rate information, to see which headings your newspaper uses.
There are a variety of general health magazines that can be useful, as well as some publications focusing on specific conditions such as diabetes or arthritis.
The Internet
Today most people have access to the Internet. Even if you are not an Internet user, you know an Internet user. Even if you do not have a computer, you can use one in your local library or ask a friend for help. The Internet is the fastest-growing source of information today. Information is being added every second of every day. The Internet offers information about health and anything else you can imagine. It also provides several ways in which you can interact with people all over the world. For example, someone who has Gaucher disease, a rare health condition, might find it difficult to find others with the same disease where she or he lives. The Internet can put the person in touch with a whole group of such people; it doesn’t matter whether they are across the street or on the other side of the world.
The good thing about the Internet is that anyone can maintain a Web site, a Facebook or other social network page, a blog, or a group. That is also the bad thing about the Internet. There are virtually no controls over who is posting information or whether the information is accurate or even safe. This can mean that although there is a lot of information out there that might be very useful, it also means that you may encounter incorrect or even dangerous information. Therefore, you should never assume that information found on the Internet is entirely trustworthy. Approach information obtained online with skepticism and caution. Ask yourself, Is the author or sponsor of the Web site clearly identified? Is the author or source reputable? Is the information contrary to what everyone else seems to be saying about the subject? Does common sense support the information? What is the purpose of the Web site? Is someone trying to sell you something or win you over to a particular point of view?
One way to start analyzing the purpose of the Web site is to look at the URL (the address, starting with http://). The URL will usually look something like this:
http://patienteducation.stanford.edu/
At the end of the main part of a U.S.–based Web site’s URL, you will most commonly see .edu, .org, .gov, or .com. This will give you a clue about the nature of the organization that owns the Web site. A college or university will have .edu, a nonprofit organization will have .org, a governmental agency will have .gov, and a commercial organization will have .com. As a general rule of thumb, .edu, .org, and .gov are fairly trustworthy sites, although a nonprofit organization can be formed to promote just about anything. A Web site with .com is trying to sell you a product or service or is selling advertising space on its site to others trying to sell you something. This doesn’t mean that a commercial Web site can’t be a good one. On the contrary, there are many outstanding commercial sites dedicated to providing high-quality, trustworthy information. They are often able to cover the costs of providing this service only by selling advertising or by accepting grants from commercial firms. The URLs for some of our favorite reliable Web sites are listed at the end of this chapter.
The Internet and Social Networking Sites
Social networking sites and blogs are exploding on the Internet. Sites such as Facebook, MySpace, Foursquare, and Blogspot are currently very popular, but everything may change by the time this book is published. These sites enable the average person to communicate easily with others who want to listen (or read). Some sites, such as Face-book, require that users determine who will be allowed to read the thoughts they post on their page. Others, such as Blogspot, are more like personal journals that are open to anyone who finds them on the Internet.
Many such sites have been started by people living with particular health conditions, and the authors are eager to share their experiences. Some have discussion forums associated with them. The information and support offered can be valuable, but be cautious: some sites can be proposing unproven and dangerous ideas.
Discussion Groups on the Internet
Yahoo, Google, and other Web sites offer discussion groups for just about anything you can imagine. Anyone can start a discussion group about any subject. Groups are run by the people who start them. For any one health problem, you will probably find dozens of discussion groups. You can join them and the discussions if you wish, or just “lurk” (read without interacting). For the person with Gaucher disease, for example, a discussion group may allow her to connect to people who share her experiences. This may be her only opportunity to talk with someone else with her rare disease. For someone with bipolar disorder, it may be difficult to talk with someone face-to-face about his problems. To find discussion groups, go to the Google or Yahoo (or other) home page and search for a link to “groups.”
Keep in mind that the Internet changes by the second. Our guidelines reflect conditions at the time this book was written. Things may have changed by the time you read this.
Becoming an effective resource detective is one of the jobs of a good self-manager. We hope that this chapter has given you some ideas about the process of finding resources in your community. Knowing how to search for resources will serve you better than being handed a list of resource agencies. If you find resources that you think we should add to future editions, kindly send them to self-management@stanford.edu.
Resources
Association of Cancer Online Resources (ACOR): http://www.acor.org/
CarePages: http://www.carepages.com/
CaringBridge: http://www.caringbridge.org/
Center for Advancing Health: http://www.cfah.org/
Centers for Disease Control and Prevention (CDC): http://www.cdc.gov/
HealthCentral: http://www.healthcentral.com/
Mayo Clinic: http://www.mayoclinic.org/
Memorial Sloan-Kettering Cancer Center: http://www.mskcc.org/
National Cancer Institute: http://www.cancer.gov/
National Institutes of Health (NIH): http://www.nih.gov/
National Institutes of Health Office of Rare Diseases Research: http://www.rarediseases.info.nih.gov/
National Library of Medicine: http://www.nlm.nih.gov/medlineplus/
National Library of Medicine tutorial for evaluating Internet health information: http://www.www.nlm.nih.gov/medlineplus/evaluatinghealthinformation
.html
PatientsLikeMe: http://www.patientslikeme.com/
Psych Central: http://www.psychcentral.com/
QuackWatch: Your Guide to Quackery, Health Fraud, and Intelligent Decisions: http://www.quackwatch.org/
Ratings of Health Web Sites: http://www.healthratings.org/
U.S. Department of Health and Human Services (HHS): http://www.healthfinder.gov/
WebMD: http://www.webmd.com/