The Family

Notes from VHLFA eGroups Chat

Dr. Gary Wood, a clinical psychologist from Florida who has VHL, met with a group of  chatters in the VHLFA eGroups chat room Sunday, December 26, 1999

Dr. Wood: The family is a personality in and of itself. Each person in the family plays a role in this personality. The family is like a drama played out in the theater of life. When there is an insult to the family, such as a disease, the family as a whole reacts and each person playing his or her role reacts in some unique way.

For example, in the family there is typically "the blamer", there is typically a "placator", there is typically a "distractor", and typically the "intellectual" or computer type. When we are trying to understand the psychosocial aspect of VHL understanding the family system can be as important as understanding the disease process and the personality of the patient.

Normal families react to abnormal events such as VHL in very specific ways. And all VHL families should understand that we struggle together to deal with the disease and its impact and influence on the family.

The family is not unlike a person. When there is an event, they react. Each person in his or her role tries to absorb it in his or her own way. For example, the "blamer" who comes across as angry is in fact fearful. The best approach to use for the "blamer" is reassurance to calm their fear, not to confront. That will just cause a power struggle.

In the case of the "placator" – the syrupy sweet person who absorbs all the blame, very humble, all-my-fault, blame-me – these individuals often need more firmness in facts and structure. Otherwise they will become like a sponge. They will absorb all the emotion and become very sick physically.

The "distractor" – the prototype is an adolescent who is routinely diverting the attention to another subject and away from the subject at hand like VHL. They may be in the room but they are looking away, changing the subject, uncomfortable. Often the distractor needs a stronger person to lean on and to structure things.

Chatter: Reassurance in what way?

Dr. Wood: Reassurance comes in many different forms. If you are physically present with the person, eye contact and a non-judgmental reflection of what has been said is often enough. In some instances further real information can reassure the person about what is "really going on". This is tricky.

Chatter:  Denial is a big concern. We often hear that a family member is in denial, and won’t go for testing.

Dr. Wood: Denial is a psychological defense mechanism, an unconscious mechanism that by definition is not privy to the person who is using it. Denial is not conscious. In some cases we label someone as "in denial" when we are frustrated with them. In fact these individuals may be unaware, unmotivated, or distracted. Through education, therapy, constructive confrontation, and a variety of life experiences, people can break through the denial process. Often denial is more a lack of conscious readiness to understand, or a lack of information.

Denial is a very primitive defense mechanism that begins in early childhood, and certainly is used by many people to deal with trauma. I think I would reframe it from "denial" to "a need for more awareness." Denial is something you have to discover in a very confidential relationship. People will not reveal their sensitivities readily. Often you can provide information that helps them see connections. Like: "Have you ever thought that the headaches you are experiencing might be connected to those of other family members?" or "I remember when Uncle Don told the story about his first headache, and his story was not unlike yours."

Chatter: How do you get someone ready?

Dr. Wood: I think that the person does more to ready themselves than we do to ready them. However, accurate, reliable information, presented in a very folksy "marketable" way, can provide a context for people. The information and the way it is presented need to be palatable. For example, we are now using marketing strategies to "sell" lots of things. If you want to sell them, you have to tap into their motivations. A good example is women who purchase make-up and beauty products. The marketers prey on women’s fears of being ugly, desire to be more appealing, etc.

It may be in vogue to have an annual physical. In some sectors, it is! And if you don’t do it, you’re unusual. And in the course of an annual physical you can discover a great deal about someone’s baseline health. We need to "sell" the concept of annual physicals for everybody, or "primary prevention," a relationship with a primary care physician. As we learn more about VHL, and as vehicles for more information occur, such as these conferences, we have a better chance of readying people.

Incidentally, I don’t know if the work of the VHLFA has been recognized by other organizations, but it seems to me that the work of the VHLFA is perhaps more advanced and effective than that of other similar organizations. Everybody wants to be associated with a "winner", so marketing the success of the VHLFA might be a good thing.

An annual physical is a reasonable expectation. An annual VHL screening may be a bit much for a person to take. And those of us who have VHL may fret that everybody has it. Not everyone in the family is going to get it. But anyone who has a genetic disease in their family would do well to have an annual physical, and to take with them a brochure about VHL.

Concerning information, it is critically important to get regular retinal screening for VHL in the first several decades of life. This is very important information.

I think it is also important not to allow the disease to become our life. We would not want to use every family occasion to bring this up, but pick our times.

When people are confronted with trauma, they are in shock. There are two possible paths they follow. One is to withdraw, run away. The other is to become more aggressive, blame the doctor. These are normal reactions to any trauma. One of the things we need to do is to review with all our VHL family members the normal reaction to trauma. Stress is a normal reaction. Shock. Disbelief. One should not be criticized or blamed for withdrawing, but understood. A social service representative from the hospital, or a therapist who understands family reactions to health problems, should be brought in on a consultation.

There is an emerging field called "behavioral health." There are specialists who specialize in working with patients and families whose conditions are primarily physical health problems, not mental health. Behavioral health, or behavioral medicine. Centers of excellence like Johns Hopkins, Mayo Clinic, etc., would routinely have a behavioral medicine specialist as part of the team. The social service representatives can be very helpful if they are brought in – they are not often brought in.

There is no doubt that the suffering that arises from the surgery, the organic changes, the structural changes, the disabilities, are tremendous. In my own family, when I lost my sight it affected my entire family tremendously – it still does. Whether it’s the mother, father, sister, brother, some people become protective, some withdraw and don’t want to have anything to do with you. Many times they just cut all family ties.

The patient will become a caretaker for the family; or withdraw into his or her own fantasies and isolate; or on the other hand may become very angry and aggressive, belligerent. I think there is a significant level of substance misuse to deal with these frustrations. There is certainly a great deal of dysfunction that arises in families, all because people are anxious about this trauma.

It is well understood that the adjustment after a trauma can take 2-5 years. In ordinary circumstances people will make this adaptation without a lot of intervention. However you can accelerate the adjustment when the illness and associated effects are dealt with candidly and with gentility as they arise.

Chatter:  Do we, the affected people, have to hold the hands of all these family members?

Dr. Wood: No, we do not have to hold their hands. One of the sad but most revealing insights comes when any person recognizes his or her limitations. And often when we have to acknowledge that a parent, a sibling, or even one of our children cannot come to the place we would like them to, and we must accept this limitation and go on with our lives. This is referred to as setting realistic boundaries. I will say it takes a strong and resilient person to face this limitation, but it is the only way I know, otherwise we have the realization of this popular new personality called "co-dependency". It describes people’s habits of wanting to care-take everybody. Sometimes we can’t help everybody. In some instances, reconciliation of conflict occurs, or may not occur, at a higher spiritual plane.

Chatter:  I like this discussion of co-dependency, because I’m a pro. When I went home for Christmas and found out that my father was ill, I blamed myself for all the stresses my recent VHL surgeries have caused the family.

Dr. Wood: Bless you, you’re normal. Any of us who has a flaw frets about its impact on our loved ones. Please stop shy of thinking you’re so powerful and influential as to pull the rug out from under your family or anyone’s health. VHL is a bad disease with very unpleasant consequences, but it is not a nuclear bomb.

Chatter:  The first thought I had when they suspected a brain tumor was: "I can’t tell my parents. I don’t want them to think I’m going to die like my sister did." I wanted to protect them from that kind of pain. When I was in the hospital for my surgery, the worst pain was seeing the pain on their faces.

Dr. Wood: Certainly you would want to protect them. However, you would not be able to protect them from their own thoughts. You can do more about your own thoughts and feelings than you can theirs. And in turn you will have some positive influence on them. But they will determine that, based on their own experiences.

Chatter:  Some of the family pain is from previously unresolved issues from past VHL illnesses. It’s a real family affair.

Dr. Wood: Yes, it sure is a family affair! And I would encourage you to explore these unresolved issues with an objective third party, if you think it’s warranted.

Chatter:  Actually the best thing about the surgery was that it helped me to deal a bit more with some unresolved issues from my sister’s death. I don’t know if the family has moved along in this area, but I think I have.

Dr. Wood: Good. Some people are more psychologically minded than others. More women than men, for example. And talking about feelings and dealing with sensitive topics has to be done in small dosages. Those of us who have the disease, or those family members who are intimately familiar with the disease, are "loaded for bear," and sometimes we use a canon when we should use a pea-shooter in communications with other people. We need to educate and bring people along gradually. Public awareness campaigns are very important. Often you can get the attention of your family or others in the community through a public campaign rather than a mission you undertake yourself.

I would expect that people who have been diagnosed themselves feel a burden to protect their family members from their own suffering, and from the suffering that may arise from other people in the family getting the disease. It’s a very loving consideration, but it can be destructive. We should all keep in mind that we are person who happen to have VHL, not "VHL patients" who happen to be people. We do have a life, and we should celebrate that life, and take up VHL only when it’s relevant.

Chatter:  In my family there was a teen-ager who was in the hospital with an unknown condition that might have been VHL, but his father would not tell the doctor there was VHL in the family.

Dr. Wood: Body shame, shame around the body, is a common psychological reaction. When our bodies are affected by diseases like VHL we develop a self-image that is in part a result of this insult to our bodies. We must understand that our bodies and our minds are together, and that shame or guilt are as real as VHL.

Chatter:  I remember that the first thing I dealt with was feeling betrayed by my body when it got sick.

Dr. Wood: You are your body, and your body is you. Some things occur that are beyond our control. It is our coping with uncontrollable events like VHL that determines our adjustment, not that we have been betrayed.

Chatter:  Yes, I am learning that part of my healing is learning to love my body again, scars and all.

Chatter:  Scars have never bothered me. I call them my battle wounds. We all have them – physical or mental. But now that one of my eyes is deteriorating, for the first time there is something on the outside that people can see that tells them I have a problem. Now that I feel people can see something wrong, it is starting to bother me. Before I was pretty much dealing with things as they came my way.

Dr. Wood: When the disease is invisible it’s one thing, but when it becomes visible it’s another thing. But in both instances, how you think about it, and how you react to it are most important.

I think there is this preoccupation with the perfect body, and this has been particularly emphasized for women. It is very important that we take a realistic view of our bodies, not an idealistic view. At the same time, when we do have a flaw, it’s not something we want to embrace with celebration, but tolerate as a real limitation. Thus we can then work on techniques to accommodate the limitations and emphasize our strengths. Often we would like to hang our hat on some simple issue or simple solution. But I have discovered that life is difficult, and it gets easier when you realize that!

Chatter:  Can you give us some advice on accepting our new looks and limitations?

Dr. Wood: I would advise you to take whatever steps are necessary to tolerate and preferably accept your strengths. For this will be your guide through the difficult times. Not a preoccupation with your limitations. I have no doubt that you could consult with a beauty specialist or friend to some up with some approach to dealing with a scar or a change in your physique, but what is really important is how you think about yourself.

A wonderful book that I like is a "New Guide to Rational Living" by Albert Elllis. He takes a realistic approach to dealing with these things in general, not just VHL.

Chatter:  I read that in college. It’s awesome. Rational Emotive Therapy is very helpful.

Dr. Wood: Many thanks to everyone for coming. Best wishes for a very happy new year!