Dealing with Denial

A Chat with Dr. Gary Wood, clinical psychologist, Florida, Sunday, March 19, 2000

Dr. Wood:The subject for this evening is denial. I will discuss this from a psychological perspective. I will offer a definition of denial which you can react to from your particular circumstances.

Technically, denial is an unconscious process which permits an individual to resist a threatening thought or situation. Denial preserves the individual mentally as he or she experiences anxiety about the conscious threat. We will go from here to your questions.

Chatter: I don’t think I have ever denied having VHL, but I can’t say that I have embraced it freely.

Dr. Wood: That sounds like a normal reaction, reflecting both frustration-anxiety and strength. Keep it up!

Chatter: I have several relatives who are at risk for VHL, and one who even has some symptoms that might be VHL. They don’t want to hear about VHL, and won’t go for testing. How can I push or suggest without creating a rift in the family?

Dr. Wood: Let me respond to your question by pointing out that you are now talking about technique. That is, what technique should family members, friends, and others apply to bring the patient, or potential patient to a point of seeking health care. This is the most difficult challenge loved ones face, especially with adults. With minor children, depending on the age, you have more control, or at least influence.

First of all, the technique should begin with accurate, reliable information presented to the VHL candidate, the at-risk relative, to gauge his or her interest and to begin the educational process. Of course, with children this can begin with routine examinations, with small amounts of information about causality. Remember, reasoning doesn’t really begin until adolescence.

With regard to adults, you face stubbornness and anxiety. Well-established habits make it hard for the late-onset patient to deal with their anxiety and their caregivers. Often the most important feature in helping the VHL candidate is a bond of trust. This provides a platform for mutual information gathering, information sharing, and facing the difficult task of testing and treatment. If you are in the unfortunate position of not having this bond, or your family member does not have a bond with a health care provider, then we are faced with what we sometimes refer to as more active or directed techniques.

For example, one extreme approach is intervention. Intervention means loved ones sit face to face with the VHL candidate, after some training with a professional, and each person shares how the VHL candidate’s condition and behavior affects them. This is about sharing specific effects, not opinions. The goal here is constructive confrontation with the VHL candidate, moving to a greater position of awareness and motivation for help. These are all self-help techniques.

Chatter: I had vision problems throughout my growing up. It was more difficult for me to deal with my peers than to accept my vision handicap.

Dr. Wood: Your personal knowledge about the change in your vision across your development is an illustration of how a person overcomes denial and moves toward a healthier profile. Keep it up! Peer group reaction represents the peer’s anxiety, usually their own fear of something terrible happening to them. "Could it rub off on me?" Anyone who has a difference about them, such as VHL, worries about the approval of their peers. This again is another reality of this VHL condition, the struggle to be comfortable with yourself and be accommodated by your peer group.

Chatter: My husband doesn’t want to go to the hospital, even though he has symptoms. The doctors are telling him it’s "just stress" – but today he’s bleeding from ear and nose. What should I do?

Dr. Wood. Call the emergency room of your local hospital -- now. The first course of action is to rule out a physical cause. Contact an emergency facility for an evaluation. An evaluation of stress can occur in a non-urgent setting, but stress is not likely to cause the symptoms you cite.

There are two parts to this question about denial. First is the immediate part, what to do now, and the second is what to do in the long run. In my opinion, where life is on the line, and you are an observer of a medical change, and you are not qualified to make a medical determination about bleeding or other such matters, you must have the courage and resourcefulness to act independently to get help for this person and for the family. You may need to consult someone in the medical community, someone in the legal community, and other trusted partners – the clergy, level-headed friends, etc. – but a more active confrontive approach should be taken with regard to the immediate problem. In some instances you have to lay it on the line and say what the consequences are going to be if it’s not solved.

In regard to the long run, the spouse without VHL would benefit from consultation with an expert who knows something about an overworked term: co-dependency. While it’s not a scientific term, it recognizes personal characteristics in people who, because of their own thoughts and actions, can interfere with help-seeking on the part of the patient. Believe it or not, some caregivers can unknowingly enable patients not to seek help. This statement is not intended to be accusatory or critical, but these dynamics have to be understood in each situation and with each person and each patient.

Chatter: I have been working with a large group of relatives to help them come out of denial. We are making slow but steady progress, using the strategies of educational approach and trust relationship that you mentioned before. Another mother called me yesterday to find out how to test.

Dr. Wood: Are they in denial, or simply unaware?

Chatter: Aware that VHL is in their family tree, but it hasn’t hit them yet.

Dr. Wood: One of the moral responsibilities for all of us once we are aware of something like VHL is to let people know. It’s good for the patient and for the family at large. Prevention is the theme. I like to remind people that wearing a seatbelt is a prevention exercise that can reduce harm. It’s a small effort to reduce risks. Using examples like this helps.

Chatter: But different people are ready to listen at different times.

Dr. Wood: Yes, sir. Assessing readiness is key, and is the craft of a wise person. Hang in there!

Chatter: Thanks, I plan to be available when they need me.

Dr. Wood: Three important characteristics of social support are accessibility, availability, and approachability. These are important techniques in building a bond of trust. Keep up your own good health and strength. It takes those to be a good support person.

Another Chatter: I don’t have a problem denying the illness, I just have a problem having people accept me for who I am.

Dr. Wood: Acceptance is a routine question for all people, particularly if you have a difference about you, such as VHL. Of course self-acceptance is at the top of the ladder for developing personal strength. This comes easier if you have others who are comfortable with you and who are understanding about the challenges you have to face. However some people are not comfortable with themselves and when faced with someone who has a difference that person is often awkward socially. Be careful not to make the logical error of concluding there is something wrong with you that is more than VHL when other people react unfavorably. Again, self-acceptance is important. Try to educate your friends and family. That is your obligation as a VHL patient.

Chatter: My attitudes in the past have made me an outcast of my peers and my parents too.

Dr. Wood: You may need to find yourself a supportive person or group to continue your development. I know it’s not easy to reach out. Associating with like-minded people is more likely to result in support and encouragement.

Another chatter: Your parents may not have cast you out as far as you think! Our own attitudes can shape the way others see us.

Dr. Wood: If your attitude and past continue to trouble you or interest you, you may want to consult with a counselor to gain more understanding and improve your social life. It’s a good growth step.

Regarding parents rejecting children, it’s important to understand that one’s feelings of rejection and "distance" are very different from the perspective of the person who feels rejected, and from the perspective of those presumably doing the rejecting. Often the feelings of rejection can arise from what you think has happened, not from what has occurred. Parents can over-react or under-react, and the child can perceive rejection. Even over-indulgence can be perceived as rejection. Working on your own thinking and negotiating a realistic relationship are two different matters. Sometimes an objective third party, such as a family counselor, can help. At other times you have to settle for an armed truce with limited contact with loved ones, and develop your own personal strength.

Most colleges and universities have student counseling available, and if you have a health insurance plan, counseling is available through your insurance provider. If you are without health insurance, the United Way provides counseling based on your ability to pay. Counseling is also available through the state vocational rehabilitation services.

Regarding the effects of VHL and society, in both cases you are more likely to deal effectively with both by controlling your thinking more than trying to control the disease or other people. I think this is a more optimistic and realistic approach. Otherwise you will find yourself becoming very angry, frustrated, and experiencing feelings of helplessness. Good luck!

Moderator: Thank you, Dr. Wood, for being here with us, and for another excellent session.

Dr. Wood: Good night, and I wish everyone well in their medical management and health.