Healing Handbook for Persons with Diabetes

Diabetes can seem overwhelming.Chapter 2: Coping with Diabetes

Your diabetes diagnosis probably left you feeling confused and overwhelmed. You may be having trouble concentrating on learning all the things you have to do to follow your diabetes care plan. Maybe you're thinking, "How will I ever be able to stick to the diet?" or "I can't give myself an injection!" or "I pass out when I see blood -- I can't do a blood test! " And you're probably wondering, "What will diabetes do to me?"

All of these things have been said by people who are now living successfully with their diabetes. How did they do it? By taking one day at a time and learning all they could each day. The more you know about diabetes and your self-care plan, the less frightened you will be.

Psychological Aspects of Diabetes 

Some people just don't believe they have diabetes. They don't see why they need to follow a diabetes care plan. Other people understand in their minds that they have diabetes, but still do not follow their care plans. These are forms of denial. It can take time to overcome denial, but the sooner you accept your diagnosis and begin learning about your diabetes, the sooner you'll achieve independence and good health under your care plan.

Most people diagnosed with diabetes experience anger. It is perfectly normal to feel this way at times, but you won't help yourself by remaining angry and hostile all the time. Try talking to family members, friends, or others with diabetes to get these feelings out. And consider directing the energy you're using on anger to something positive by volunteering or fund raising for diabetes organizations.

Maybe you feel guilty that something you did caused your diabetes. Was it all the candy you ate? All that binge eating? Are you being punished for something bad you did?

NO! 

None of these things cause diabetes. If they did, almost everyone would have it. Whenever you feel that diabetes is a punishment for something you did, review the Causes of Diabetes in Chapter 1 to remind yourself that diabetes can happen to anyone.

Depression can be a serious problem for people with diabetes. Symptoms of depression include feelings of helplessness or hopelessness, loneliness, lack of self-esteem, fatigue, irritability, and changes in sleep patterns or eating habits. If you experience any of these symptoms, get help. Your doctor or diabetes educator can refer you to counselors with experience in helping people with diabetes.

Many people with diabetes will go through a time of grieving. It is normal to grieve over the loss of your healthy self when first diagnosed with diabetes or when a complication occurs. With time and support from family, health-care providers, religious leaders, and friends, you will be able to resolve your grief.

One of the most difficult things you have to face is the knowledge that even if you follow your diabetes care plan to the letter, you may not achieve perfect control. There is no guarantee that following your regimen will keep you healthy forever. Then why bother? Because working at good control will make you feel better, both physically and emotionally. You'll feel better when you know you're doing everything you can to stay well. And the only way to reduce your risk of complications is to stay in good control of your diabetes.

Your Own Coping Skills 

How do you feel about having diabetes? Do you see it as a daily challenge, one that requires your own strength, energy, and attention as well as the support of your fiends and family? If so, you're probably coping well with your diabetes. You understand that diabetes is a serious condition, but you are optimistic about your treatment plan. You're committed to taking responsibility for your self-care, to following your regimen, and to learning as much as you can about your diabetes. You trust your health-care team, and you feel free to participate in decisions about your diabetes care plan. Your attitude is positive.

On the other hand, you're not coping well if you believe your diabetes isn't a serious condition, or that your care plan is impossible to follow, or that your treatment won't work. Maybe you feel that it's your doctor's responsibility to keep you well, that you can't change your lifestyle to fit your diabetes regimen, that you have no time for medical appointments, or that you can't depend on family and friends for support. These are all poor coping responses.

If you feel you're not coping well with your diabetes, ask yourself why not. Do you think you are not strong enough, smart enough, or well enough educated, to take responsibility for your self care? Are you afraid you can't afford diabetes supplies? Your first step is to seek out health-care professionals you can trust and work with as a team member. It takes courage and hope to get involved in your own care, but it's worth it.

For more information on psychological aspects of diabetes, see The Physician Within by Catherine Feste. You can order this book from Diabetes Center, Inc., P.O. Box 739, Wayzetta, MN 55391.

Another book that has brought comfort to many is When Bad Things Happen to Good People by Harold Kushner. You can find this book in your library and at most book stores.

Social Aspects of Diabetes 

Job discrimination is against the law, but it happens. Employers who have had bad experiences with employees who had diabetes may be reluctant to hire you. Title V of the Federal Rehabilitation Act of 1973 defines diabetes as a "handicap" if it is used to "exclude qualified workers from jobs, promotions, or other employment activities." This law may protect you against unfair employment practices if you work for:

  • An agency of the executive branch of the federal government or the US Postal Service
  • A business with contracts valued over $2,500 annually with the federal government
  • Any program that receives federal financial assistance

All states have anti-discrimination statutes. To find out about the relevant laws in your state, contact the state commission on human or civil rights, the office of fair employment, or the department of labor.

People with diabetes are banned by law from certain types of employment. Regulations of the US Department of Transportation bar people with Type I (insulin-dependent) diabetes from driving trucks on interstate routes (these regulations are being changed to allow people with diabetes who follow strict guidelines to drive trucks on interstate highways). People with diabetes cannot serve in the armed forces or hold commercial pilot's licenses. In some states, they cannot join police forces. Federal Occupational Safety and Health Administration (OSHA) guidelines limit the types of machinery that can be operated by people with diabetes.

The American Diabetes Association (ADA) advocates for case-by-case determination of employment eligibility. The ADA's position is that "Any person, whether insulin dependent or non-insulin dependent, should be able to accept any employment for which he or she is individually qualified." Your local ADA affiliate can provide information about the ADA's Attorney's Network, a group of lawyers experienced in helping people with diabetes. You can also contact the local bar association for referrals to lawyers with experience in employment discrimination cases.

Help yourself. Don't accept a job that will conflict with your diabetes care plan. Seek employment where you will be allowed time for your regular checkups, and where a good health plan is offered. Your state vocational rehabilitation office can assist with vocational counseling, job placement, and retraining.

Driver's Licenses 

Most states now require a doctor's certification that a person with diabetes is in good control before granting a driver's license. Bring a note from your doctor when you apply for or renew your license.

Life Insurance 

You may have trouble purchasing life insurance after your diabetes diagnosis. If you find a company that will accept you, your premiums may be triple those charged to people who do not have diabetes. Diabetes Forecast magazine advertises a Diabetes Group Insurance Trust Plan with in-hospital benefits and group term insurance for AD members. Contact your local ADA affiliate or the national organization (see Chapter 1 for addresses) for more information.

Health Insurance 

The best health insurance deal is employer-provided group coverage. Policies vary, and many either do not cover preexisting conditions or include waiting periods for coverage of preexisting conditions. In Massachusetts, most group policies cover at least 80% of the cost of insulin, syringes, oral hypoglycemic medications, and blood glucose meters. Very few cover the cost of blood glucose test strips. Medicare covers 80% of the cost of test strips for persons on insulin.

Diabetes Identification 

Your health-care provider may suggest that you wear a bracelet, tag, or necklace, or carry a card in your wallet that identifies you as having diabetes. This is helpful in emergency situations where you might not be able to speak to the health care provider assisting you.

Medic-Alert Bracelets are a good idea. 

YOUR GUIDE TO BETTER DIABETES CARE: RIGHTS & ROLES

An individual with diabetes can, in general, lead a normal, healthy, and long life. Looking after yourself and learning about your diabetes provide the best chance to do this. Your doctor and the other members of the health-care team (made up of doctors, nurses, dietitians, and chiropodists) are there to advise you and to provide the information, support, and technology for you to look after yourself and live your life in the way you choose. It is important for you to know what your health-care providers should provide to help you reach these goals and what you should do.

Your Rights 

The health-care team should provide:

  • A treatment plan and self-care targets
  • Regular checks of blood sugar (glucose) levels and of your physical condition
  • Treatment for special problems and emergencies
  • Continuing education for you and your family
  • Information on available social and economic support

Your role is to build this advice into your daily life and to be in control of your diabetes on a day-to-day basis.

Treatment Plan and Self-Care Targets 

You should receive the following:

  • Personalized advice on proper eating -- types of food, amounts, and timing of meals
  • Advice on physical activity
  • Your dose and timing of tablets or insulin and how to take them; advice on how to change doses based on your self-monitoring
  • Your target values for blood glucose, blood fats, blood pressure, and weight

Regular Assessments 

At each visit, your health-care professional should:

  • Review your self-monitoring results and current treatment
  • Talk about your targets and change where necessary
  • Talk about any problems and questions you may have
  • Continue diabetes education

The health-care team should check: 

  • Your blood glucose control by taking special tests. (These tests -- done two to four times per year if diabetes is well controlled -- include measures of "glycohemoglobin" (sometimes abbreviated as HbA1c or GHb) or "fructosamine." Fasting blood glucose tests are advised for individuals treated without insulin.
  • Your weight
  • Your blood pressure and blood fats, if necessary

The following should be checked at least once per year: 

  • Your eyes and vision
  • Your kidney function (blood and urine tests)
  • Your feet
  • Your risk factors for heart disease, such as blood pressure, blood fats, and smoking habits
  • Your self-monitoring and injection techniques
  • Your eating habits

Continuing Education 

The following are important items you should learn about:

  • Why to control blood glucose levels
  • How to control your blood glucose levels through proper eating, physical activity, tablets, and/or insulin
  • How to monitor your control with blood or urine tests (self-monitoring) and how to act on the results
  • The signs of low and high blood glucose levels and ketosis, how to treat them, and how to prevent them
  • What to do when you are ill
  • Prevention and treatment of long-term complications, including possible damage to eyes, nerves, kidneys, feet, and hardening of the arteries
  • How to deal with life-style variations, such as exercise, traveling, and social activities (including alcohol consumption)
  • How to handle possible problems with employment, insurance, and driving licenses

Special Situations 

Advice and care should be available in special circumstances, especially if you are a child, adolescent, an elderly person, or planning to become or are pregnant.

The first months after your diabetes has been discovered are often difficult. Remember, you cannot learn everything during this period; learning will continue for the rest of your life.

If you have problems with your eyes, kidneys, feet, blood vessels, or heart, then you should be able to see specialists quickly. In addition, you should receive clear information on what to do in emergencies.

Your Role 

You must learn to take control of your diabetes on a day-to-day basis. This will be easier the more you learn about your diabetes.

Learn about and practice self-care. This includes self-monitoring of blood glucose and learning how to change your treatment regimen according to the results.

Follow these guidelines:

  • Examine your feet on a regular basis.
  • Follow good life-style practices. These include choosing the right food, maintaining a health weight, getting regular exercise, and avoiding smoking.
  • Know when to contact your health-care team.
  • Keep in regular contact with your health-care team about any questions or concerns you may have. Have your questions prepared beforehand and repeat them if the answer is unclear to you.
  • Speak to your health-care team, others, with diabetes, and your local or national diabetes association.
  • Read pamphlets and books about diabetes provided by your health-care team or diabetes association.
  • Make sure that your family and friends know about your needs as someone with diabetes.

If you feet that adequate facilities and care are not available to help you manage your diabetes, then contact your local or national diabetes association.

Adapted from "Patient Rights and Roles," a document prepared under the auspices of the St Vincent Declaration Working Group of WHO Europe and the European Regional Council of IDF. Publi cation supported by Boehringer Mannheim. Members of the group who produced the document include: KGMM Alberti (United Kingdom), J Apfel (United Kingdom), FA Gries (Germany), J Jervell (Norway), C Juinot (France), S Keranyi (Hungary) HMJ Krans (Netherlands), M Massi-Benedetti (Italy), V Sparre-Enger (Belgium), and K Staehr Johansen, a WHO observer. "Patients Rights and Roles" has also been published in Diabetic Medicine (1991). The copyright is owned by the International Diabetes Federation.

REMEMBER: The care of diabetes is a team effort involving you, your physician, and the diabetes education staff where you receive your medical care. This handbook cannot-and was not meant to-replace this team effort. 

This handbook embodies the approach of the diabetes care team at the University of Massachusetts Medical School. Different diabetes care teams may approach some aspects of diabetes care in ways that differ from those in this handbook. While most teams are in close agreement regarding the GENERAL PRINCIPLES of diabetes care, they may differ in the DETAILS. There can be more that one "right" way to approach a specific issue in diabetes management. 

Always remain in touch with your diabetes care team, and bring any questions you may have about the materials in this handbook to their attention! 

Copyright 1995-1999 Ruth E. Lundstrom, R.N. and Aldo A. Rossini, M.D. All rights reserved.
Feedback: send e-mail to Dr. Aldo Rossini