The Importance of Being Believed

From the desk of PWN contributor Linda M. Rio, M.A., Marriage and Family Therapist  – I received a call last week from a man who read one of my articles about how pituitary disorders are linked with mental health issues. He told me he had been diagnosed with Cushing’s and was being treated medically but had not been told about the mental health aspects that could certainly explain the problems he talked about having personally and in his relationship. On his own, he happened upon my article. And, I must be honest that I have talked with too many pituitary patients and/or their family members who have found me in very similar ways, by chance.

To be clear, neither I nor anyone else I know can with certainty say that a pituitary tumor “causes” depression, anxiety (including OCD symptoms, fears, self-doubts, worry etc.), mental confusion, anger/rage, loneliness, mood fluctuations/liability, impaired social relationships, suicidal thoughts/actions and more. The term causality is tricky, and in science, this must be proven by precise methodology.

However, without a doubt, an “association” between pituitary disorders (some more than others) and mental health symptoms have been shown in multiple published works. The preeminent researcher and professor of endocrinology in Portugal, Luis G. Sobrinho, M.D., is but one of many who have studied this association and confirmed that the link exists (Sobrinho,2003; Sobrinho, Sobrinho, Duarte, Paiva, Gomes, Vicente, & Aguiar, 2012; Sobrinho, 2014).  Dr. Sobrinho even suggests that very stressful life events, especially during early childhood, may even contribute and predate the development of certain types of pituitary adenomas. Other prominent physicians have declared that psychosocial aspects do play an important role in a patient’s Quality of Life (QoL) and acknowledge there has been extremely little attention paid in the medical and psychological literature to these issues (Golden 2013).

Many pituitary patients continue to have symptoms that are considered “mental health” but are unaware these are very likely related to their “physical” illness. Why is this important? To some, this question means nothing, unless it is about you and your health.

To someone experiencing a host of difficult to explain or understand symptoms having an answer…even knowing that someone wants to understand IS IMPORTANT! Even if there is no simple cure for the myriad of symptoms, physical AND mental health, being believed is important, and knowing there may be a connection between the physical and weird mental issues is important! Pituitary patients often feel crazy and wonder, “Am I crazy”? But there is a difference between feeling crazy and being crazy!

Because neuroendocrine disorder symptoms look like many other medical or mental health diagnoses it is often difficult to obtain a proper diagnosis and treatment.  Additionally, women are affected five times more often than men and are often misdiagnosed as obese or depressed (Stewart, 2004). I have heard multiple stories about people, especially women, being told to just diet, or just be happy, or just….only to finally find an actual tumor in their head was causing the weight gain and other symptoms! Delays in getting proper treatment can certainly add to the frustration, anger, even diagnosable depression for anyone dealing with chronic and/or serious medical issues. For many pituitary patients, the lack of information about the emotional and cognitive impairments often associated with the actual physical disorder only compounds an already difficult problem.

Doctors Weitzner, Kanfer, and Booth-Jones (2005) seemed to get “it”. In regards to their research where they identified the difference between classic “depression” and “apathy” in their studies of pituitary patients.  “Although the majority of pituitary tumors are benign, the physical, emotional, and cognitive changes that patients experience on their well-being is malignant.  Our patients did not feel helpless or incompetent. In fact, they continued to actively seek help from different physicians because they knew that there was something wrong with their bodies that no one was addressing. Present in a series of cases, in which patients with pituitary disease were diagnosed and treated for depression and showed little response to the treatment for depression. When the diagnosis of apathy syndrome was considered and treatment implemented, the patients’ condition improved.” (Weitzner, Kanfer, and Booth-Jones, 2005).

Having any medical illness is difficult. Having a medical illness that no one seems to understand is uniquely isolating. Valerie Golden writes that “One almost universal psychosocial aspect of illness (pituitary) is loneliness, a painful affective state in which one feels empty, isolated, and sad (Golden, 2013).  The feelings of being isolated, not believed can then spiral downward in terms of family and other social relationships. The relationship between family relationships and pituitary disorders is bidirectional (Banker, Valeras and Rio, 2014). What this means is that someone dealing with the physical and psychological effects of a pituitary disorder are likely not going to be able to fully function in a relationship, and the more this occurs their partner in that relationship is likely to pull away, withdraw, become angry etc. only furthering the sense of isolation and loneliness for the patient.

Of course, there is help. The man who contacted me took the step to reach out to find me, to call me, and to ask many questions. Now, I don’t know if my brief conversation with him was helpful. I can only hope he will follow-up on the books, articles, and online resources and other suggestions I provided and they will be of help. But he broke out of the isolation and self-doubt to ask his questions. I hope that by talking with someone who is quite familiar with the wide spectrum that encompasses pituitary disorders he feels validated. I hope he feels believed because that is a good start toward true healing.

 

Our thanks to Linda M. Rio MA,  for providing this critical information and contributing to our publication. Read Linda’s past articles on PWN and learn more about Linda’s work by going to her website at:

www.lindamrio.com .

Linda’s Book:  “THE HORMONE FACTOR IN MENTAL HEALTH” is available through AMAZON.COM and other major booksellers.

 

References

Baker, J.E., Valeras, A.B., and Rio, L.M. (2014). Hormonal disorders and the therapist: A family systems perspective. In LM..Rio (Ed.), The hormone factor in mental health: Bridging the mind-body gap (pp.138-155). London: Jessica Kingsley.

Golden, V. (2013). Mental health aspects of pituitary disorders. In Laws, Ezzat, Asa, Rio, Michel & Knutzen (Eds.), Pituitary disorders diagnosis and management(pp. 17-19). New York: Wiley-Blackwell.

Sobrinho, L.G. (2003). Prolactin, psychological stress and environmenet in humans: Adaptation and maladaption. Pituitary, 6(1) 35-39.

Sobrinho, L.G., Duarte, J.S., Paiva, I., Gomes, L., Vicente, V., & Aguiar, P. (2012). Paternal deprivation prior to adolescence and vulnerability to pituitary adenomas. Pituitary, 15(2), 251-257.

Sobrinho, L.G. (2014). Psychological factors and pituitary disease: The chicken and the egg. In L.Rio (Ed.), The Hormone factor in mental health: Bridging the mind-body gap 105-119. London: Jessica Kingsley.

Stewart, D. (2004). Psychosocial aspects of pituitary disease in women. In S. Ezzat & R. Knutzen (Eds.), The Pituitary Patient Resource Guide,(pp. 137), Thousand Oaks, CA: Pituitary Network Association.

Weitzner, M.A., Kanfer, S.K.., and Booth-Jones, M.. (2005). Apathy and pituitary disease: It has nothing to do with depression. 17:159-166, May 2005. J Neuropsychiatry Clin Neurosci.  American Psychiatric Press, Inc.

 

 

Photo by Andreas Dress on Unsplash

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1 COMMENT

  1. Once again, a very timely article that hits right to the core of what we’ve been dealing with. Thank you again Linda, for all your ‘heart’ work that has been such a life saver to those of us dealing with pituitary mental health fallout.

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