Why do Support Systems Disappear within the Huntington’s Dia Family?
By James Valvano
国庆节作文三年级CONTRIBUTING WRITER冬季保健小常识
James@TheHuntingtonsPost
男性肝不好有哪些表现Within the H untington’s dia community, one of the most frustrating and disheartening challenges is the lack of support received from the biological family. A large number of our community eks the support, guidance, and safety from social network groups. Among the many topics discusd between members within the social circle, is the lack of support from family members. How can this be? Why are Huntington’s dia patients isolated und erneath their very own roofs?
Let us first examine the fact that there are individuals within the family unit who indisputably have Huntington’s dia, y et choo to remain in denial. As per Jane Pauln, Ph.D., Director of the Huntington Dia Clinic, University of Iowa Healthcare Center, in her Understanding Behaviour in Hu
ntington’s Dia article,she states: “Denial in an individual with HD is common. There are at least two reasons that denial can occur in HD. Commonly, denial is considered a psychological inability to cope with distressing circumstances. We often e this type of denial in cas such as loss of a loved one (denial that they are gone), terminal dia, rious illness, or injury (i.e. denial of cancer or HD diagnosis). This type of denial, however, typically decreas over time as the individual begins to "face reality.” In contrast, individuals with HD often suffer from a lack of insight or lf-awareness. They are unable to recognize their own disabilities and are unable to evaluate their own behaviour. This type of denial is sometimes called organic denial and is a condition that may last a lifetime. Given that we typically assume that denial is under the control of the individual, the term may not be uful for persons with HD suffering from this organic type of denial. Therefore, we recommend that "unawareness" be ud to describe this behaviour in HD.”[1]
What Dr. Pauln writes pertains to tho who have Huntington’s dia, and the denial and other factors they experience. However, I wish to examine the other side of this equation. Why do HD-free family members, who in so many cas, deny or not su pport the family member with Huntington’s dia. Community members have written to me: “I have HD but my brothers do not want to accept it. None of my relatives talk about it even though everyone knows my Dad died from it.” And, “My mo
ther is the only one in my family who understands and helps me through the day. Although I love my own family, I wish they would take the time to learn about this dia the way my online family does.”
The comments have taken center stage in many online social groups. Since 2009, I have witnesd countless posts and conversations pertaining to this subject. So then, why does this “fracture” happen within families of tho with Hunt ington’s dia? Why is there a lack of support for the individual suffering from this dia?
天然祛斑
The Emotional System十首最美的古诗词
As per Studies by Undergraduate Rearchers at Guelph, Vol 1, No 1 (2007), it sheds light on this question, and provides reasoning for family behavior pertaining to Huntington’s dia: “It is important to note that the atmosphere in the HD-affected family is very different from a normal family. The prence of HD might be associated with veral types of loss experienced by the family: loss of both the personality and the physical aptitude of the affected parent, loss of the usual family structure, and
potential loss through death. The fact that there is not an abundance of knowledge regarding HD for
ces the families to develop their own mental image of the disorder, create their own meaning of the dia and its potential impact on the family. The continuing social perception of the permanently ill as being uless members of the society can contribute to the reported feelings of family members such as shame, cretiveness (the two most commonly noted), depression, and social isolation.”[2]
Bad on my own personal experiences, I find mylf in a conundrum. With all due respect to the “Study”, could this expla nation be considered a copout? The question I wish to ask is; Are we not responsible for our own actions and inactions? Moreover, when is it time to asss the fine line between lfishness and choice, and psychological aspects, which we [as humans] may not be able to control? In life, we often utilize defen mechanism to “escape” or “hide” from many realities. We often hope that, “the problem will go away” or, “I can’t handle the situation” or, continue to live by the idiom, “out of sight, out of mind.” Among many of the mechanisms, family members of individuals who suffer from HD often move beyond denial, and into repression, to push painful and unwanted feelings into their subconscious. Coping methods such as avoidance, do more harm than good, and can further distress the individual who is suffer ing from Huntington’s dia. In fact, each of us us coping methods; but when is it time to face reality? What does it take to examine and relieve onelf of mental and emotional escapism?
眼睛美容
The Emotional Cutoff
The document, Studies by Undergraduate Rearchers at Guelph, Vol 1, No 1 (2007), continues to disct and analyze many aspects of the emotional predicaments the family of an HD patient experiences: “The coping strategies of avoidance and denial are so common among partners and other family members that they derve special attention. While both avenues constitute an effort for lf-protection from devastating emotions by bringing relief, comfort, and alleviation of pain, denial is considered as an unconscious defen mechanism whereas avoidance is a conscious act. The ont of the dia is associated with having to face and process potentially burdensome and distressing information, which can thus be considered as a traumatic event with painful emotional conquences such as depression, helplessness, and uncertain future – all of which might be difficult to take in at once. They are usually exhibited during the initial stages of ont and demonstrate an adopted attitude of family members and spous to deal with problems as they come up. Denial of the prence of HD in a carrier masks the fact that the condarily affected parties are not mentally prepared to face it, that they need time to process the information and adapt to the situation, even if the possibility of risk was known beforehand.”[2]
I could never speak from the standpoint of all of my peers who suffer with Huntington’s dia, how
ever, in many cas we fe el like “the fly on the wall.” We obrve the denial – the exclusion – the transparent inaction of loved ones. We e the “lf-protecting” coping str ategies of our family members. We comprehend the “human-factors” at play; however, knowledge of this “adopted attitude” does not alleviate the pain. Added to this burden of trying to live with the physical and psychological pain, is the fallout of financial devastation that individuals with HD face 24/7. Many are on fixed disability incomes or are completely reliant on others and are not able to contribute financially to a houhold. Does this financial conquence play a key role in the coping mechanisms of our HD-free family members as well? Another peer from the Huntin gton’s dia community wrote:“Why don’t my uncles, cousins, and godparents want to take an interest in me and what I am going through with this dia? Why do they choo to turn their back on me? Why do they reject me? Don’t they u nderstand how hurtful that is? All of my friends have already rejected me, why is my own flesh and blood doing the same? Don’t they understand that this rejection is painful and only makes me feel wor?”
I find mylf a bit broken inside each time I receive correspondence of this nature. Sadly, I can empathize and sympathize with all of the individuals. Environmental factors play a vital role in the life of someone with HD. We often view or associate “environmental factor s” as things; however, hu
man beings are inclusive and instrumental factors. If loved ones fail to support or disregard the individual suffering with HD, the conquence is that they may exacerbate the emotional, psychiatric, and physical symptoms of the dia. If the family unit is disturbed or fractured, all other existing environmental factors compound the situation. Individuals with Huntington’s dia live “it” 24/7, while many family members can go home, or go on with their normal daily lives. Family members often do not realize that their H’Dears experience “psychological loops” [obssive compulsive behaviors], which has a cau and effect on how they perceive abandonment. Behaviors and/or inactions can leave ever-lasting impressions on the person ravaged by HD regardless of the advancement or progression of the dia.
Complete Abandonment
摩羯座男
Over the years, I have witnesd the pain and anguish from the Huntington’s dia community. I received a very touching email from one community member: “I have HD and I have tried everything to make my family understand that I need them in my life. I have a small family and it hurts to know that my own Aunt openly said that she does not want anything to do with me. She said it is too much to handle.”Although very disconcerting and quiet saddening, this does happen within the H untington’s dia community. We must face the harsh and tragic reality that we cannot change wh
at people feel. We cannot force anyone to be who we wish them to be. Conquently, if we try to change anyone, our actions can only isolate them further. So, what does one do when they have experienced complete abandonment of loved ones? My advice is to step back and allow the family member as much space as possible. Allow them to move forward with their life, and continue to live yours. In time, one can only hope that the family member(s) will realize that not only do you need them in your life, but also they need you in theirs. Quite often, family members fail to realize that the individual who suffers from HD, is still alive, and has so much to offer. Another important factor is that HD-free family members need to understand that they have the ability to enrich the lives of the loved one who is suffering – and vice versa.
I am the venth of eight children. I am a person living with HD – a caregiver of my cond oldest brother who has HD, and was a caregiver of my Father who just recently pasd. Although I am part of a supportive family network, there is a fundamental level of denial, which does exist. The truth of the matter is that within most families, denial and avoidance happens, no matter how resilient and concrete one presumes their family network is. The family component is complex at best, and there are often “underlining” or “historical” reasons for why a lack of support exists for the individual with Huntington’s dia. One must take a proactive approach to heal or resolve issues or “unfinis hed-business” within a family.
What can a family member of a Huntington’s dia patient do?
37是什么意思The document, Studies by Undergraduate Rearchers at Guelph, Vol 1, No 1 (2007), speaks to the concept of oneness and participation: “Many studies concluded their reports by suggest ing that more active participation of relatives in the pre and post-test discussions might be very helpful in improving family dynamics and encouraging more internal communication about HD and its meaning to the family.” [2]
I have faith that my fellow H’Dears will agree that family members do not mean to be hurtful, distant, or oblivious to what we are experiencing. Do I personally feel that actions and inactions are “ch oice-driven”? The answer is yes, for each of us. Without question, there is no magic wand, which exists to help relatives
of an individual who suffers with Huntington’s dia, but there are avenues one can take to ea their anxiety, frustration, and exclusion. It may sound simplistic, but it takes a conscious effort to turn the feelings into something positive and constructive. I have communicated with, and advid many individuals [family members who are not affected by HD], and have heard their frustrations and fears. I have en the dynamics in place, but there are ways in which family members can eradicate their denial, anxiety, and isolation.
My advice to family members, who are HD-free, is to get outside their comfort zone and face it head on. In many cas, HD-free family members e that their loved ones utilize social networks to gain the much-needed supports. I urge the family members to follow suit, join the groups, become friends with the Huntington’s dia community, and care providers. Sometimes all it takes is to become part of the movement, read what others have written, and take from it what will help you. Educating yourlf is the key to emotional and mental health, and can lead to a better understanding of this dia. Utilize support groups in your area, or [if affordable] ek family counling. One need not be a Psychologist or verd in the study; one can do a lf-asssment and approach situations with honesty and openness.
If the HD-free family member takes a proactive and participative role in the life of their loved one with HD, it will strengthen family ties, and in result, the individual with HD, will feel less alone. Once this behavior is adopted, the HD-free family member will soon e major [healthy] changes within themlves. By becoming part of the solution, one will slowly e that anger, denial, and isolation are not necessary. Coping mechanisms such as avoidance and denial are not easy to overcome, but each of us can make the conscious decision to better our emotional and mental health. In time, a brilliant safety net will propagate, which can only help the overall wellbeing and welfare of the family
unit. Supporting a family member is paramount, and the rewards, which follow, are plentiful. We must always remember that family is a gift and not a given.
“The bond that links your true family is not
one of blood, but of respect and joy in each
other's life.”Richard Bach
References
[/understandingbehaviour/id20.html, By Jane Pauln, Ph.D.,
Director of the Huntington Dia Clinic, University of Iowa Healthcare Center, titled:
Understanding Behaviour in Huntington's Dia~Dr. Jane Pauln
[2]journal.lib.uoguelph.ca/index.php/surg/article/viewArticle/338/456, By Undergraduate
Rearchers at Guelph, titled: Psychosocial impact of Huntington's dia on families and spous from the perspective of the Family Systems Theory
