From Linda M. Rio, MA, Marriage and Family Therapist – I have written for PWN in previous articles on the impact of pituitary disease on the family and more recently on the importance of family and peer support when dealing with chronic illnesses, but it has been a while.
Since the COVID-19 pandemic, most everyone has had to stay at home more, either working or attending school from home, job loss due to the pandemic, fears of becoming ill, etc. There is a myriad of reasons for the dramatic shift in the everyday lifestyles of many post COVID, and we are now beginning to see some research results in the examination of the effects of months of such shifts in our lives. Not surprisingly, the psychological effects of COVID-19 have been found that show elevated levels of anxiety, depression, and sleep disturbances in the general population (Huang & Zhao, 2020). All stress has an impact on couple/family functioning but for some physical illness of the partner is such a significant stressor that increases marital dissatisfaction and the likelihood of a subsequent divorce (Daniel et al., 2009).
There are many variables necessary to consider when it comes to the impact pituitary illness has on a family: (1) religion; (2) personal and family belief systems; (3) level of education; (4) socioeconomic status; (5) employment history and status; (6) current age; (7) gender; (8) the quality of medical care received; (9) age at diagnosis and initial treatment; (10) tumor type and stage, and (11) marital status and sexuality (Weitzner & Knutzen, n.d.). Some research indicates that couples seem to be more affected by more specific situations in their marital relationship versus a catastrophic event such as a global pandemic, thereby generating a greater rather than lesser understanding in the couple (Allen et al., 2020). Current studies also show a 68.7% concern among couples about the fear of salary reduction since the pandemic (Salas-Nicás et al., 2021). In the first systematic review of the literature Jonathan Martínez-Libano1, María Mercedes Yeomans reviewed studies that thus far conclude that it cannot be ascertained whether the COVID-19 pandemic has had negative or positive effects on the satisfaction of couples around the world. However, it did find the risk factors of high anxiety and anguish, high levels of stress, social isolation, worse mental health perception, job loss, reduction of salary, symptoms of depression, fears of getting COVID-19, being a woman, parental exhaustion, low wages, and being a parent of children with chronic diseases to be factors that do affect couple relationships particularly at this time (Martínez-Libano & Mercedes Yeomans, 2020). So, just like most things, there is no one definitive answer as to whether the pandemic has helped or hurt couples and families, but rather, it depends upon many individual factors. How a family was functioning prior to the isolation, financial, social etc. stress COVID-19 brought on affects how they have responded since. For some families, this has been the biggest stress faced and has helped them pull together or pull apart.
Those couples/families facing a pituitary disorder either prior to the pandemic or since have had additional issues to face from the general population. Many pituitary patients have had fears and concerns about their physical vulnerability. Of course, each patient needs to consult their physicians to determine if, in fact, COVID-19, is a greater threat to them and placing them in the highly vulnerable category. This is not the case for all pituitary disorders, so they must be evaluated on a case-by-case basis. It is well-documented that anxiety tends to occur frequently among those with a pituitary disorder, even post medical or surgical therapy of prolactinomas, Cushing’s, or acromegaly (Sobrinho, L., 1991). Those who were vulnerable to feelings of fear, worry, sleeplessness and more before a worldwide pandemic are unlikely to not feel an increase in such emotions in the past eighteen months or so. And we know that according to family systems theory that every part of the individual and familial system feeds off of other parts of the system, and in this way the social context in which a person lives impacts the entire family system (Nichols& Schwartz, 2001).
In today’s world, it seems impossible to ignore the worldwide effects this COVID-19 virus has had on the multiple systems, work, school, family, social, political, etc. on all lives, but especially for those who are dealing with any form of serious and/or chronic illnesses. And, it is well-documented that some disorders of the endocrine system tend to go hand-in-hand with emotional dysregulation, so in those cases, it is crucial for families to understand these common mental health comorbidities and to find ways to work with a mental health therapist as well as among each other to construct a plan for when symptoms, such as anxiety or depression, occur and how best to handle these (Banker, Valeras, & Rio, 2014).
Any illness, especially one that poses a significant health risk, affects not only the individual concerned but the entire family system. And, unfortunately, there seems to be little research or literature about how pituitary illnesses may be the same or unique in terms of stress on the family. It does seem reasonable to assume that each illness affects individuals and their surrounding families in slightly different ways depending not only on the properties of the disorder but how the person and their family functioned prior to symptom development as well as other factors including financial, social, and spiritual support. Weitzner and Knutzen have written about patients with pituitary disease who have apathy. They state that such helpful skills as problem-solving are likely to become frustrating in such cases and result in escalating emotional outbursts and blaming. They recommend that family members be apprised of what they can expect from the affected family member and adjust their problem-solving strategies appropriately. Families with good problem-solving skills are able to benefit from the knowledge obtained from the treatment team and come to accept and compensate for the change in the family system (Weitzner & Knutzen, n.d.).
COVID-19 or some variant is likely to stick around for some time so finding healthy ways to accommodate to this unfortunate reality may be quite necessary. Recognizing that not only COVID but pituitary disorders also have an effect on more than just the patients is important.
Pituitary, Pandemic and the Family: What Might Help?
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- Talk as a couple/family about what it means to have a pituitary tumor/disorder. Even children’s anxieties about a parent’s health can be helped, not hurt, by sharing simple but accurate information about medical procedures as long as it is shared calmly and with the assurance that children will be cared for no matter what happens with their parent or in the world.
- Ask specific rather than general questions. For example: rather than, “So, do you have any questions?”, it’s better to presume there are thoughts, questions that are hard to verbalize so better to ask, “Do you worry I might get COVID more easily because of having this tumor?”
- Have a spouse, partner accompany the pituitary patient to endocrine and/or neurosurgical appointments. At the very least inviting a close family member sends the message they are included in the process and recognized as impacted but also valuable in the healing process.
- Ask family members if they’d like to join a patient social networking group.
- Send Pituitary World News announcements, articles, podcasts etc. to family members so they can receive up-to-date and accurate medical information relevant to the specific diagnosis.
- Write…connect with family, friends, others about your own journey. Use technology to connect virtually with others even at times when it may be unwise, or not feasible to meet in person.
- Invite family, friends to PWN and other pituitary patient conferences where they may be able to meet, connect, learn not only about patients’ issues but also the challenges and benefits of being connected to a pituitary patient.
- Suggest to PWN (and other groups) creative ideas and feedback about what helps, what doesn’t, future thoughts for topics to be covered.
- Don’t isolate but rather let the family, the world know more about what it is really like as a patient, family member. Isolation only compounds the mental health symptoms.
- Make use of social support systems already in existence such as religious, hobby or sports centered, 12 step (AA, NA etc.) and even some workplaces offer options.
- Encourage all family members to engage in whatever type of physical exercise is preferred, tolerated, recommended by physicians. The benefits of physical movement go far beyond muscle tone and weight management with numerous studies showing mental and emotional health improvements. Exercise is also hugely important to anger/stress management.
- Find things other than illness to discuss and have in common. Although it can be hard to focus on something other than what might cause pain, fear, uncertainty it is essential to find balance in life.
- Take time to “play”! Families with children need to play but couples also need lightness, humor, and the freedom that comes with letting go.
- Put an extra focus on finding healthy pleasures in life: reading, mindfulness meditations, music, art, hobbies, pleasurable aromas, massage etc.
- Communicate, communicate, communicate! This cannot be overstated as to the importance to family health and functioning for all families, but especially when under stress of a serious illness, and even more with the global stress of a pandemic.
One positive of the COVID-19 pandemic is that none of us has been unaffected. This is a positive because everyone worldwide knows about it (sometimes too much), so a common lexicon has developed where no explanations are necessary. To a greater or lesser degree, COVID-19 has provided a topic of conversation that anyone can participate in. Of course, along with this new force the world is dealing with comes the controversy and disagreements about what to do about it but at least there is no need to explain what COVID-19 is anymore. Pituitary disorders, on the other hand, being considered “rare” are rarely known by those other than the extremely specialized physicians and other medical/mental health professionals who see such illnesses routinely. But, this pandemic and disorders of the pituitary are both impactful on daily lives to one extent or another, and both are definitely a stressor to individual and family lives. There are steps to take to mitigate the effects of each, some of which have been suggested in this article.
Although something as global and terrifying as a global pandemic can sometimes be hard to avoid hearing about and watching on TV, media, etc., it is important to shut it out at times and just enjoy personal and family time.
A tumor in the head can seem like a personal pandemic for some and have as much or more of an impact on the patient and their family. But overfocusing, talking nearly exclusively about either, will do no good to anyone. The world will and has already found ways to accept the reality of the pandemic. Neither of these challenges of a pandemic or pituitary disorders have been invited into our lives. But human beings have the power to find ways to accommodate, acclimate, adjust, and accept. Acceptance does not mean liking something it just means finding creative inner strength to keep moving forward even in the face of difficulty.
References:
Allen, E., Fredman, S., Rhoades, G., Markman, H., Loew, B., & Stanley, S. (2020). Male service members’ and civilian wives’ perceptions of partner connection regarding deploymentand PTSD symptoms. Couple and Family Psychology: Research and Practice, 9(4), 206–218. https://doi.org/10.1037/cfp0000151
Banker, J.E., Valeras, A.B., & Rio, L.M. (2014). Hormonal disorders and the therapist: a family systems perspective. In L.M. Rio (Ed.), The hormone factor in mental health: bridging the mind-body gap (pp. 138-155). London: Jessica Kingsley.
Daniel, K., Wolfe, C. D. A., Busch, M. A., & Mckevitt, C. (2009). What are the social consequences of stroke for working-aged adults?: a systematic review. Stroke, 40 (6), 431–440. https://doi.org/10.1161/STROKEAHA.108.534487
Huang, Y., & Zhao, N. (2020). Generalized anxiety disorder, depressive symptoms and sleep quality during COVID-19 outbreak in China: a web-based cross-sectional survey. Psychiatry Research, 288, 1–3. Retrieved September 15, https://pubmed.ncbi.nlm.nih.gov/32325383/
Martinez-Libano, J. & Yeomans, M.M. (2020). Couples satisfaction during the Covid-19 pandemic: a systematic review. Psychology and Education. 8(5), ISSN 1553 -6939 Retrieved September 15, from http://psychologyandeducation.net/pae/index.php/pae/article/view/5692/4877
Nichols, M.P., & Schwartz, R.C. (2001). Family theory: concepts and methods. Boston, MA: Allyn and Bacon.
Salas-Nicás, S., Moncada, S., Llorens, C., & Navarro, A. (2021). Working conditions and health in Spain during the COVID-19 pandemic: Minding the gap. Safety Science, 134. https://doi.org/https://doi.org/10.1016/j.ssci.2020.105064
Sobrinho, L.G. (1991). Neuropsychiatry of prolactin: causes and effects. Baillier’s Clinical Endocrinology and Metabolism, 5, 1, 119-142.
Weitzner, M.A., & Knutzen, R. The impact of pituitary disease on the family caregiver and overall family functioning (n.d.) Retrieved September 19, 2021 from https://pituitary.org/medical-resources/pituitary-family-resource-center/the-impact-of-pituitary-disease-on-the-family-caregiver-and-overall-family-functioning
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