The Importance of Peer and Family Support in Dealing with Chronic Illness

From the desk of Linda M. Rio, M.A., Marriage and Family Therapist  –The Holidays are upon us at last, which means an inundation of television and media ads to encourage us all to spend money! The holidays also mean for many a time of rushing to buy presents and attend parties in addition to completing routine work. Holiday shows are in theaters, on T.V., Netflix, HBO, and all the other multitudes of ways we all receive entertainment these days. Of course, not everyone celebrates or has a reason to be joyful, but it is hard to avoid the message that we all are supposed to be happy. Some people are alone. Some are isolated.

This past October, Pituitary World News hosted its first Patient Conference on the campus of the University of California, San Francisco. The ability for patients to not only hear presentations by world-renown physicians but also then be able to meet and converse with these physicians cannot be overstated in its significance. And, to have the chance to see that these doctors do care deeply about patient health and healing can be a cherished opportunity. Far too often, our healers are kept at a distance by the very institutions meant to provide needed help. So, a gathering of this type is exceptional. I was most honored to be a presenter, and to be asked was truly humbling considering the list of others there. And, since it was a small enough event to allow interaction with those who attended, we all had chances to talk and converse with those who came, often great distances.

Much importance, research, financial, and other resources are placed on the medical and physical symptoms and treatment of pituitary disorders. And, of course, pituitary disorders require highly-trained specialists to diagnose and treat properly. But there is often also another side frequently overlooked before, during, and following successful medical treatment. Any physical illness, especially severe and chronic, has an emotional, psychological element attached. There is a sub-specialty within the general field of psychology called Family Therapy. Family Therapists look to the whole of a person’s system to help understand, explain, and heal emotional and relationship concerns. Within Family Therapy is another specialty called Medical Family Therapy. The fundamental tenet of medical family therapy is that all human problems are biopsychosocial systems problems. There are no psychosocial problems without biological features, and there are no biomedical problems without psychosocial characteristics. All therapeutic issues involve complex systems dynamics at biological, psychological, interpersonal, institutional, and community levels (Doherty, McDaniel, & Hepworth, 1994).  So, from my perspective not only should pituitary disorders be viewed through the individual patient’s lens, but also through a broader lens that includes the people around the patient, those with which the patient interacts, and most importantly those who support them emotionally as well as physically, medically and psychologically.

One of the things I heard from several of the patients who came to the PWN Conference is that this was their first, only time to meet with another human being who also had a pituitary disorder! From what I could discern, this was a special, even profound experience. What a potential antidote to isolation and loneliness! Chronic condition self-management refers to a person’s ability to manage the symptoms, treatment, and physical, psychosocial, and lifestyle changes that are associated with living with a chronic condition (de Silva, 2011). But, trying to “manage” alone can be genuinely lonely and isolating. The fact that pituitary disorders are considered “rare” can add to the isolation (Pituitary Foundation, 2019). A person with pituitary disease may incur a variety of losses, from the loss of seeing oneself as healthy and invincible, to an inability to work, to loss of sex drive and intimacy, to the inability to fulfill other usual social roles in life (2013). Anyone of these and more seems to more than qualify for true understanding, care, support. 

Emotional support has been described as involving caring, empathy and encouragement; informational support involves advice, suggestions with alternative actions and factual feedback relevant to a particular topic; and appraisal support involves affirming feelings, thoughts and behaviors and therefor is motivational and encouraging the individual to continue with problem-solving attempts despite setbacks (Dennis, 2003). And, most of us have had the experience of having a friend, family member, co-worker etc. say, “I understand”, but know they REALLY do not. There is a skill, a quality involved in truly imparting support and understanding. Often, hearing that another person is going through a very similar experience reveals an automatic understanding that needs few words to express. Peer support in the context of chronic disease management refers to ‘support for a person with a chronic condition from someone with the same condition or similar circumstances’ (Heisler, 2007).

Peer support offers a level of acceptance, understanding, and validation not found in many other professional relationships (Mead & McNeil, 2006). Generally, there are several predominant types of models for peer support in chronic condition management. These include those led by a professional that encourage peer interactions and discussions, structured peer-led self-management, peer coaches, community health workers, support groups, telephone-based peer support, and web-based and email-based programs. Attending at a conference where one can actually hear and speak with other patients isn’t (yet) listed in the professional literature, but in my mind certainly counts as support, even if this is brief and time-limited. I can only hope that some of those at the conference exchanged contact information and will continue to provide encouragement, information, even friendship. 

Of course, our most sought-after support is most frequently with family and close friends. Unfortunately, family rarely come equipped with the skills or training to know how best to provide that much-needed support. This is where formal counseling or Medical Family Therapy can help by providing the opportunity and training in such vital skills as effective communication. Often without intending, close family members can miss or not understand signs and symptoms, which can be quite disturbing to the actual pituitary patient. 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). This can be where a family gathering together to learn and understand more about not just pituitary disorders, but the specific one diagnosed in that family, can help the entire group. A therapist or social worker can, of course, help facilitate such discussions so they can be meaningful and productive. 

Online, real-time social media platforms, such as Facebook, may offer solutions to existing problems with accessing traditional group-based programs for chronic disease management. In mid-2017, Facebook’s community reached two billion people (Partridge, Gallagher, Freeman, &Gallagher, 2019). Facebook in everyday lives has contributed to the emergence of a potential new era of health care information delivery. However, the potential for Facebook groups to provide novel methods for delivering group-based health care, and enabling support from health care professionals and peers, is yet to be fully harnessed.

Having a pituitary disorder can be difficult, challenging, fear-producing, confusing, and much more. But, having a pituitary disorder does not have to be isolating. This is one reason why Pituitary World News exists, to provide accurate, research-informed, up-to-date medical information, but also to help provide emotional support so patients and their families won’t feel alone, at the holidays or any other time of year. Perhaps next year, more patients will be able to attend the PWN conference, bring family members, and make connections with others who truly do understand. 

Editor’s note:

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

de Silva, D. (2011). Helping people help themselves: a review of the evidence considering whether or not it is worthwhile to support self-management. London, UK: The Health Foundation.

Doherty, W.J., McDaniel, S.H., Hepworth, J. (1994). Medical family therapy: an emerging arena for family therapy. Journal of Family Therapy (1 994) 16: 314 0 1 63-4445. Retrieved 12-2-2019. https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1467-6427.1994.00775.x

Dennis, C.L. (2003).  Peer support within a health care context: a concept analysisInt J Nurs Stud, (40) pp. 321–32. 10.1016/S0020-7489(02)00092-5 [PubMed]

Golden, V. (2013). Psychosocial aspects of pituitary disorders. In E. Laws, S. Ezzat, S. Asa, L. Rio, L. Michel, & R. Knutzen (Eds.) Pituitary Disorders Diagnosis and Management. Oxford: Wiley-Blackwell.

Heisler, M. (2007).  Overview of peer support models to improve diabetes self-management and clinical outcomes. Diabetes Spectrum, (20) pp.214–21. 10.2337/diaspect.20.4.214

Mead, S., & McNeil, C. (2006). Peer support: What makes it unique. International Journal of Psychosocial Rehabilitation, 10(2), 29-­‐37.

Olney, M.F., Kennedy, J., Brockelman, K.F., & Newsom, M.A.  (2004). Do you have a disability? A population-based tst of acceptance, denial, and adjustment among adults with disabilities in the U.S. Journal of Rehabilitation (70), 4-9.

Partridge, S.R., Gallagher, P., Freeman, B., Gallagher, R. (2018). Facebook groups for the management of chronic diseases. J Med Internet Res 2018;20(1):e21 doi:10.2196/jmir.7558. Retrieved 12-2-2019 https://www.jmir.org/2018/1/e21/

Pituitary Foundation. Retrieved 12-6-2019 from https://www.pituitary.org.uk/information/pituitary-conditions/

 

Photo courtesy of Tyler Nix@jtylernix

 

 

 

© 2019, Pituitary World News. All rights reserved.

2 COMMENTS

  1. I’m new to your news…I have a pituatary tumor that’s grown & pinael cyst & arachnoid cyst..that’s grown..I have No support or help!…I’ve had these for 10 years & each year my symptoms have gotten worse! …my most recent is periphael vision loss, headaches & nausea, eye pain & extreme fatigue…I use to be a flight attendant with a major airline 10 years ago, all of a sudden in the airport the whole airport got blurry & double vision, I was pulled off the flight to Calgary & lost my 37yr.flying career!…because of pituatary tumor, they said It could rupture inflight? Since then, in my State of Oklahoma, I’ve been to numorous nuerosurgeins & endos..because of Cushing symptoms very fast extreme weight gain etc…now my fatigue & moods& vision are unbearable at times!…I was told by 1 nuerosurgein he thought my pituatzry tumor was my problem & I need an out of state specialist but doesnt know where to send me.., I desperately need help & direction! Thankyou! Desparate in Oklahoma!

  2. I have partial empty sell syndrome and various problems with thyroid, graves, lupus ,unknown skin conditions and many other conditions

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