From Linda M. Rio, Marriage & Family Therapist and PWN contributor – My husband and I just returned from driving over 3,000 miles to and from Arkansas. We live in Southern California. As a passenger in the car for that many hours one can only listen to so many songs, discuss current events, and look out at the cacti, Native American trinket shops, and numerous truck stops before one begins to think…a lot…about a LOT of things. We drove for a very specific purpose, to visit a dear friend who was just recently diagnosed with breast cancer, and her husband. They were both, understandably shaken and in need of support. Least I sound too generous, I must admit that our friends have a lovely house on a huge lake and had been trying to get us to visit for years so our trip was definitely not solely focused on dealing with a serious illness.
There were tiny signs of the onset of leaves changing color and just a bit of crispness in the air so it was also a pleasant way to begin the mental transition into another season. And fall has become my favorite season which is strange since in our home locale we rarely have much other than tiny, almost imperceptible seasonal differences. So, as I watched the desert landscape pass bye I began to ponder the change of seasons, the changes in the body due to age, and changes that are indicators of something more than normal or expected.
My friend received her breast cancer diagnosis during her usual annual exam but only due to her speaking-up to her doctor and questioning the results from her prior tests. She had for many years almost predictable call-backs following her annual mammography due to her dense breast tissue. Only this time she questioned her doctor about what was up with always needing to come back. Her question apparently sparked the decision to order an MRI which resulted in the surprising result of the cancer.
My musings about our friend’s experience caused me to harken back to the innumerable accounts from pituitary patients about all the years (decades, often) spent having suffered symptoms that only much later were attributable to a disorder of the pituitary or other part of the endocrine system. Many patients I’ve talked with report that their mental health showed the earliest signs that only in retrospect could be attributable to being affected by a disordered hormonal system. Other physical signs were only identified when finally viewed from the lens of a qualified medical specialist or one open-minded enough to refer for proper assessment. But patients often, quite often report that they “knew” something was wrong. Unfortunately, patients often do not know how to appropriately “question” their doctors and/or mental health professionals.
We all can question our own judgment and self-doubt ourselves especially in the presence of a professional who is “supposed” to know more. But, sometimes we need to speak-up, question, ask for another opinion, read, investigate, educate ourselves.
And, yes this sometimes even means using the Internet, much to the chagrin and consternation of some doctors. I am not recommending using Wikipedia as a medical resource but there are reliable resources that can help anyone become educated to then begin asking questions that might help your provider understand your concerns better. Pituitary World News, is of course, one of my top recommended sites. And, since neither medicine nor mental health are the exact sciences most folks presume or wish they were patients often must do their part to foster their own health. A lot of what helps providers is to have good, clear, precise and descriptive information from patients. Developing a clear line of communication is also helpful. Doctors cannot read minds and in spite of popular myth neither can therapists. This is why I often coach patients to first and foremost being with clearly communicating with yourself. This may sound silly but it is not uncommon for people to deny awareness of their bodies or minds, to just push forward and allow themselves to be distracted by life until it may be too late. Learning how to listen, truly listen to your own body, thoughts, feelings is an acquired skill. Learning how to then trust your own perceptions can be very rewarding. Here are just a few ways to begin that inner trust building process.
Keeping a diary or journal can be satisfying on many levels. If there are physical and/or mental pressures, pain, concerns then documenting symptoms, medications, treatments tried etc. can become helpful not only to the patient but when communicated succinctly to a doctor can also help detect problems. Writing in a journal provides a place to “talk” to oneself, and therefore a way to practice assertively addressing medical concerns with a doctor.
The term “mindfulness” is used frequently in today’s mental health landscape. This borrows from some eastern philosophies that stress awareness of one’s body, mind, and physical surroundings. Mindfulness trainings usually emphasize starting with awareness and control of the breath as a method toward true awareness. Yoga and other body therapies also commonly incorporate some form of mindful awareness. Any of such practices can help in stress reduction (often very necessary for pituitary patients). True mindfulness takes a lot of effort and practice but some simple steps can easily be integrated into daily life to help a person “know” their mind and body better.
Besides learning breathing techniques, I find it useful to simple begin by sitting in a chair and noticing different parts of the body while sitting. For example, observing how the feet feel as they are on the ground (it helps to sit straight, back against the chair), notice how each limb feels, notice fullness or emptiness of the stomach etc. progressing up or down the body just noticing the major body parts and organs. Observing the temperature in the room and any pleasant or unpleasant odors can also help with awareness inside and outside the body.
Volumes have been written about improved ways of communicating one person to another. So, I will not here attempt to even summarize such works other than to make just a few suggestions. Once you have first allowed yourself to become aware of positive and negative symptoms (if there are some), practiced by writing in a journal and/or a list, then it can be helpful to talk with a friend (family members are often too close to hear you properly). Find someone who knows you well enough to be honest with you and who can provide healthy feedback. It is important to understand the basics of the biology of stress and what changes result. When under stress, such as a visit to a doctor (or the tenth visit, to the tenth doctor) it is expected that a patient would have a certain amount of stress. Under such circumstances the parts of the brain that are good at remembering and being logical and organized temporarily go off-line. The emotional part of the brain then tends to dominate which makes clear, concise, precise communication within a very short time period allotted for most medical consultations rather pressured. Therefore, knowing this in advance it is important to come prepared to any medical appointment with clearly written notes that include your list of questions. I even suggest that you write on your list things like “remember to breathe”, and “it is ok to ask the doctor to talk to me in non-medical language if I don’t understand some terms used.”
My husband and I were asked by our friend who has breast cancer to meet with her doctor at a crucial appointment where the treatment strategy was to be discussed. We didn’t say anything but merely were there to be supportive and listen. Later she expressed an enormous amount of gratitude to us. We also now have a different kind of bond that goes beyond the sharing of good times. Sharing even a tiny part of another person’s pain or struggle can only deepen a relationship in a very profound kind of way. None of us would ever have asked for this but through the tears, hours and hours of talking we have come to see a new depth for us as individuals and in our relationships with one another.
By the way…our friend is doing well with now a very positive medical prognosis and on her way toward total healing and recovery.
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