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Newsletters: Make It Positive
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Make It Positive

Compiled by Elizabeth Tucker, Deb Pfister and Cheryl Thompson

During the recent Oley Foundation conference, consumers, their families and clinicians met to discuss how to cope with the many challenges associated with HPEN. Suzanne Appel, MD, shared her insights based on her work as a clinical psychiatrist and personal experiences as the mother of children on HPEN. Below are highlights from the two sessions. A DVD of the sessions is available from the Oley Foundation’s Video/DVD Library (see form or call 800-776-OLEY).


Words of Wisdom from Dr. Suzanne Appel

Dr. Appel began both sessions by sharing coping tips. Things she and her family found most helpful are to:

  • Attend an Oley Foundation Conference or Regional Meeting. Just the process of attending helped her family realize traveling was possible. Good planning is the key and now they have traveled outside their state and the country. Also, seeing other HPENers doing “normal” things helped shift their thinking from “not being able” to do something to “being able.”
  • Make a conscious effort to shift from thinking “life revolves around HPEN” to “HPEN as just one aspect of life.”

  • Use what you have learned to help others. That can be with others who have similar problems to what you have experienced or it could be in another venue entirely. Some examples might be as a regional coordinator for the Oley Foundation or a volunteer in your local hospital auxiliary. Other ideas might be delivering meals on wheels or volunteering at your local food pantry/food shelf.
  • Take an active role in your medical care. Be an advocate for your own or your child’s care. Most consumers or parents of consumers have learned the right and wrong ways for things to be done and the times when questions need to be asked. Use your expertise to make your health care experience better.
  • Learn to deal with stress using “the relaxation response.” Many people can be unaware of the impact thoughts and emotions, both negative and positive, have on their lives; it is important to understand what triggers stress and have techniques available to use to deal with that stress.

Obviously, some of Dr. Appel’s stress could be related to her children’s hospitalizations. To counter the “stress response” researchers, such as Dr. Herbert Benson at the Mind-Body Institute at Harvard, feel there is also a “relaxation response” that can be learned. This response can help you resume a more relaxed state. His web site: www.mbmi.org has a number of simple techniques.

One quick technique is: Making sure you are using your diaphragm to breath, take in a deep breath and exhale out your nose. Counting backwards from ten, do this slowly and deliberately. It will make a difference. Dr. Benson also has books and tapes available. He says the basic steps to learning a “relaxation response” are repetition, such as focusing on breathing and learning to passively disregard everyday thoughts. By using a relaxation technique, research has shown significant reduction in blood pressure and pulse, and changes in brain activity.

Exercise is another effective method people can use to put their minds into a more relaxed state. Other methods include meditation, tai chi or yoga. In addition, gaining knowledge can be reassuring.

Taking personal responsibility was also discussed at some length. The age of an HPENer was determined to be a most important component.

0 – 4 years = total dependence on a caregiver

5 – 8 years = learning the processes required

9 – 11 years = taking over the process, with varying degrees of help

12+ years = total independence can be strongly encouraged


Words of Wisdom from Consumers:

Counseling May Help

While not every HPENer will need a professional psychologist, one woman suggested that the emotional impact of HPEN should be addressed. Her medical doctor told her that every relationship she has will go through a transformative process when she begins HPEN. Some relationships won’t survive, some will be stressful and some can even improve. Although she didn’t feel she needed counseling, her medical doctor insisted she meet with a psychologist that specializes in critical care to help with relationship transitions and other issues that may arise. This consumer was grateful that her physician recognized the emotional impact of this therapy on the individual and all those around her, and insisted she seek preventive help. In her sessions she was able to freely express her emotions and learned to ask herself “what is really causing the emotion?” Then she could evaluate what in her life could and/or should be changed to alleviate the underlying cause.

This consumer also discussed that many women find it difficult to express anger. Dr. Appel said that it can be harmful to suppress negative emotions that fester if left unresolved. A person may also find it frustrating if they are no longer able to participate in their previous roles as a woman/man, mother/father, etc. The issues of how a person’s sexual identity changes were also mentioned, as HPEN impacts all aspects of a individual’s life — physical, psychological, sexual and spiritual.

Take Charge

One individual felt she learned to cope by taking charge of her own life, specifically issues related to her health care. When she meets a new health care provider, she establishes a collaborative relationship. She explains to them, “I am the captain of the team”. Her primary care physician is the co-captain, who helps to coordinate the medical care. His advice is very important but she will ultimately make the decision on her own, which may or may not be in total agreement with him.

Not everyone will find it easy to go from a passive to an active voice. She believes that it is difficult to succeed in the current health care system if you are passive about your own health care. Coming from a business background gave her the ability to put the consumer/clinician relationship “on the table”; almost like a contract so that each party knows his/her role and responsibilities. She realizes that it can take a shift in perspective. In many cultures men may find it easier to be assertive than women. In addition, male clinicians may, at first, be unaccustomed to having a female patient “in charge”.

Fostering good communication is critical to any relationship between the consumer and clinician. Work to improve your communication skills, and if the relationship is not working, do not hesitate to make a change. For this consumer it is important to be able to call her physician by his/her first name. Although using a doctor’s title is a common courtesy and sign of respect in the hospital culture, she feels that they both must

be relaxed and able to speak about emotional topics with openness and not hiding behind a title or position.

Developmental Differences

Developmental aspects of growing up with a chronic condition were discussed in both workshops. Some concerns that parents expressed need to be understood in terms of stages of development, for example:

Disclosure of information can be especially challenging for teenagers. Teenagers who require HPEN face additional challenges. Denial and difficulty accepting the need for the therapy were two challenges that were mentioned. Often the teenager is very self-conscious and embarrassed to let others know about his/her need for HPEN and does not disclose this information. This can be a problem if other family members divulge this information when it might seem to the teenager that the person really didn’t need to know. Other teenagers may hide all of their supplies, not want to dress in front of other kids or skip a day of therapy to keep from seeming different from their peers. The need to be like everyone else also should be understood as developmentally appropriate in early adolescence but usually diminishes in later adolescence; so even though a teenager will be secretive that may change with age. Two mothers also commented that teenagers may increase the rate on the enteral infusion pump to decrease the infusion time.

The group members commented that, although teenagers are terrified of being different, most kids are really more accepting than you would think. Most people will treat you the same or don’t find you “different.” If a friend doesn’t accept it, they may just be a shallow person. This is really a way to separate superficial friendships from individuals who are interested in a deeper friendship. Let the superficial friendship go, they are really doing you a favor by leaving. The family should be aware that the teenager will want to be in control of who is told, when they are told and how much information is shared. They may be afraid that if you told someone about his/her HPEN before, that you are going to tell others as well. Several people commented that although disclosing this information to kids in high school can be difficult, friends in college are at a different level and much more accepting.

Dining in a Restaurant

For HPENers of any age, going to a restaurant can be challenging – just because of the interaction with the waitress. The waitress may try to encourage you to eat or drink at every course. [While it wasn’t mentioned in the group, Oley has small cards available which can be handed to the server. It lets them know that there is a medical reason why you are not eating. Call (800) 776-OLEY to request a free dining out card.

Transitioning Teens to Independence

One family mentioned that it has been difficult to handle the transition of allowing their teenager to be independent with his nutrition care – not knowing when to “be in his face” or when to “back off.” While parents and healthy teenagers may have conflicts about curfews, medical “chores” will probably become the focus when there is a chronic illness. Respecting the teenagers’ need to establish autonomy while maintaining adequate medical compliance is a very tricky process.

One young woman discussed how difficult it was for her when her mother tried to make sure she remained in the hospital to receive the care she needed; yet the young girl wanted desperately to go home. At other times she knew her parents were pushing her to be independent and do her self-care – but sometimes when a parent pushes, the child becomes resistant. She also mentioned that conflicts would arise when her TPN nurse told her to do things one way and her family told her to do it another way. It would have been more developmentally appropriate for the TPN nurse to work with the family as a team. As she looks back, she appreciates the things her family did to care for her.

Peer pressure was also a difficult issue for her. She was hospitalized so frequently during high school that some of her friends were afraid that she was contagious. Luckily, she had a boyfriend who helped to change her perspective and appreciate TPN.

One family mentioned that when they couldn’t deal with the stress of their child’s illness any longer, they started using destructive behavior, tobacco and alcohol. After a period of time they realized that wasn’t helping them either so they went back to their faith. This allowed them to stop the destructive behavior and work on positive stress relievers. Avoidance, dissociation and denial are other destructive ways of dealing with stress. Positive stress relievers are faith, using relaxation techniques, meditation, exercise, a sense of humor, support groups, involvement with others, and volunteering, to name a few.

Many thanks to Suzanne Appel for facilitating these groups and Cheryl Thompson for taking such excellent notes on which we based this article.


LifelineLetter, July/August, 2005

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This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.


Updated in 2015 with a generous grant from Shire, Inc. 


This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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