From Linda M. Rio, MA, Marriage & Family Therapist
Have you ever had a paper cut on your finger? Isn’t it amazing just how such a small thing can seem to affect you so very much? It may be just a tiny cut but it can create havoc when you try to pick-up something or do even ordinary tasks. And, something so small can then affect your mood, causing you to feel grumpy or annoyed. Any physical illness or disorder, no matter how small, in some way affects our overall mood whether we are mindfully aware of it or not. And, if we feel out-of-sorts we just tend to project that to those around us. These examples can be explained by something called Family Systems Theory which sees that people’s emotions and behavior cannot be understood in isolation but as a part of something larger, their family. The term “family” can mean a biological connection or another group of individuals closely connected. The family is therefore seen a unit or a whole. The family is, after all, where we all began, even if this was an adoptive, dysfunctional, divorced, “traditional” or other family structure, no matter what the size or who is considered a part of it.
Chronic illness systemically affects individuals and families, in that the illness impacts the whole system, rather than just the individual with the diagnosis (Banker, Burke, & Rio, 2014, p139). It has been said that any serious illness can feel like a terrorist has invaded the home and taken everyone hostage! In the past most research focused on medical illness looked only at the “identified patient”, or the person with the medical diagnosis. Recently however researchers have begun looking at the impact on all members of the family, not just the “patient”. From this perspective what one member of the family experiences in some way affects all members of that family.
An example of the above that many pituitary or other endocrine disorder patients and their families may understand can be a common endocrine disorder symptom of low libido (little or no desire for sex). This symptom is seen in those with thyroid hormone, cortisol, growth hormone (GH) or other deficiencies. Especially when such issues are not properly addressed and discussed within a marriage this can eventually create a huge relationship issue, sometimes eventual break-up or divorce if it is not openly and carefully addressed. Another common psychological symptom seen in patients with endocrine disorders is depression. A person who is depressed often has less physical energy, withdraws from social contact, may not even be able to perform normal, daily functions like household chores or even going to work. Because it is not uncommon for some of the more severe endocrine disorders to be under-diagnosed and therefore untreated, patients often find difficulties maintaining a healthy, sustainable lifestyle. Practical daily life issues of maintaining a job, health insurance, and a health support system often suffer (Blevins & Rio, 2014). Children, especially, are at risk of being negatively affected by any parent with depression as their needs are high and capacity to understand is limited. When children’s physical and/or emotional needs are not being met they will often “speak” through their behavior by having poor school performance, acting-out aggressively, or withdrawing themselves and becoming depressed. Treatment of just the child ignores the total picture which involves the most important people in their world, their family.
Without meaning to do so family members may discount or deny the significance of a person’s symptoms. Since pituitary disorders are sometimes particularly difficult to diagnose, and can take months to years to discover, this can be particularly problematic for families. Unknowingly, the members of an individual’s support system often minimize the experience or give an impression that the condition is not believable, particularly when acute symptoms are present one day and few or none are present the next (Olney & Brockelman, 2003; Valeras, 2011). All family members, therefore, need to be educated to the best of their understanding about the particular disorder or illness. Even young children and teens can be helped to understand if it is presented in a way that does not blame or scare them. It is often the family members who are expected to be compassionate, so when they communicate skepticism and doubt about the existence of the disorder and the struggles associated with it, the person’s personal credibility is put in jeopardy (Matthews & Harrington, 2000). It often takes the help of a professional to allow all emotions to be expressed and then processed effectively for the family to then find the best way to accommodate and function.
Just as the family is greatly affected by any serious illness in one of its members, so also is the family a resource for support and emotional healing. Systems theory can be applied to organizations, couples, communities, or families and the techniques used by a systemically trained psychotherapist help identify behavior patterns and how each member responds to anxiety within the dynamic. One goal of this type of psychological/emotional intervention is to help individuals understand their patterns then devise alternatives which are more adaptive, healthy, and productive for the whole group. Of course psychological treatments are not intended to “cure” any physical illness just as sometimes there are not real cures in medicine, just treatments that minimize and soothe symptoms. But, we do know that the mind and body do work together sometimes creating “dis-ease”, and also can find new, healthier perspectives and alternatives to “dis-order” and ill health. Looking to the family for support, understanding, new perspectives and new behaviors is something important for pituitary patients and their family members to consider in their overall treatment planning.
So, how can understanding and using systems theory help pituitary patients? Firstly, a trained professional can help patients and their family members talk about the symptoms and the illness openly and more objectively. The “illness” can even be given a name so as to be able to address its significance, as well as the need to put reasonable, realistic boundaries around it. Family members, even children, can then be given the chance to “talk” to the illness by sharing emotions such as anger, disgust, fear and more about its role or importance (or not) in the family. The family as a whole may eventually decide to collectively come-up with guidelines around how much time and effort each day or week is spent discussing the illness. Almost all patients and their family will have to adjust to the reality of having a family member with a tumor or serious endocrine disorder. And, even if a tumor is removed surgically, quite often lifelong management of hormonal levels will be necessary. The family needs to have a safe yet open space to be able to express how this new reality feels and ways to positively adjust to a new reality. True healing does not always mean the ending or “cure” of illness/disease, but often finding positive ways to accommodate and live with the physical state that exists.
Banker, J.E., Burke, Valeras, A.B., & Rio, L. (2014). Hormonal disorders and the therapist: A family systems perspective. In L. Rio (ed), The hormone factor in mental health: Bridging the mind-body gap. London: Jessica Kingsley.
Blevins, L.S., & Rio, L.M. (2014). Introduction. In L.M. Rio (ed.), The hormone factor in mental health: Bridging the mind-body gap. London: Jessica Kingsley.
Matthews, , C.K., & Harrington, N.G. (2000). Invisible disabilities. In D.O. Braithwaite & T.L. Thompson (eds), Handbook of communication and people with disabilities: Research and application. New Jersey: Lawrence Erlbaum.
Olney, M.F. & Brockelman, K.F. (2003). Out of the disability close: Strategic use of perception management by select university students with disabilities. Disability & Society, 18, 35-50.
Valeras, A.B. (2011). God’s will? How two young Latina women negotiate a hidden disability identity. In d. Schumm & M. Stoltzfus (eds), Disability and Religious Diversity: Cross-cultural narratives and inter-religious perspectives. New York: Palgrave Macmillan.
Note: Linda can be reached at www.lindamrio.com
Linda’s book “The Hormone Factor in Mental Health” is available through Amazon.com and other major booksellers
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