The Real Life of a Pituitary Patient

From Linda M. Rio, MA, Marriage & Family Therapist

A young woman called me last year to make an appointment. She told me she had recently had endoscopic neurosurgery for craniopharyngioma. She was suffering from severe anxiety and depression and hoped to find a mental health professional who would understand the important link between the endocrine system and her mental health symptoms. When searching her insurance for mental health providers she told me she was somewhat shocked to find my name on the list having just heard about my book and realizing my office was actually geographically close to her home. Since I’ve received email and phone calls from around the world I too was surprised that she was located so close and would actually be someone I could see. From the patients who’ve contacted me this is far too often not the case. Most often it is nearly impossible to find a mental health professional with any knowledge about the pituitary, adrenal or the many disorders that affect the endocrine system. Hopefully, things are changing. I believe patients and their families can help advance knowledge and awareness to the medical as well as mental health communities.

For this particular woman (identity kept private) just being able to talk with someone who understands that as amazing as today’s neurosurgical techniques are (at least in the hands of only the most expertly trained and experienced neurosurgeons) life isn’t healed after surgery. Surgery can heal the body. The havoc often left in the aftermath of a tiny growth at the base of the skull is much more than the size of a tumor. Emotional debris may be scattered far and wide before and also after surgery. When a patient is lucky enough to find the right surgeon and treatment center this is often just a part of the journey toward health. And, often patients search years, even decades for the right medical help. Patients will often say they just “knew” or “had a feeling” what their doctors, psychiatrists, therapists told them was not right. Patients are often told, “It’s all in your head” or “you just need to not be so sad, depressed etc.”. Worse yet are those primary doctors, nurses, family, “friends”, who tells someone they “just” need to lose weight or even being disparaged or rejected by being called “fat”. And, what an experience when an endocrinologist or neurosurgeon finally confirms the true diagnosis! Finally getting an answer, someone finally believing there is a real problem can be quite a relief! But then comes the reality, “I have to have neurosurgery!”

Is depression: The not wanting to go to work (if you’re lucky to still have a job), not wanting to get out of bed, having no energy to socialize, feeling weak, tired, sleepy, wanting to stay shut-away inside directly related to an endocrine disorder? Is the feeling of anxiety: The feeling nervous, feeling fearful of what people will say or think about the weight gain (or loss) or changes in facial and other body features directly related to an endocrine disorder?

The answers to such questions remain a bit elusive. Research shows there is a link. Clinical and anecdotal reports most certainly support a relationship between the biology, the physiological findings of hormonal disorders, endocrine tumors and such. My experience in speaking with patients as well as family members is that often long before the actual discovery of hormonal imbalances, MRI scans and other numerous medical explorations there are often mental health signs and symptoms predating any actual medical diagnoses. It is also my experience that mental health symptoms may lift following surgery or other treatments but often not rapidly and sometimes never.

The young woman who came to see me wanted her “old life” back. It was my job to tell her that no amount of psychotherapy could do that because her life was permanently changed through her experiences with her medical illness, through her experiences with neurosurgery, through her experiences with those around her (family, friends, co-workers etc.) and their reactions to her life changes. I further explained that although she could not regain the life she longed for, this did not mean she could not have a good, healthy quality of life going forward. It took her time to get the medical diagnosis, time for the medical tests, time in the hospital due to complications following surgery, time for her body to heal…and time for her to heal her mental state and her relationships with those around her. Having a tumor in your head is a major, life altering event but life can go on, move forward.

Now, more than a year after her surgery this young woman has made peace with the reality of her “new” life. She needed to grieve the life she thought, imagined she’d have then slowly, with help, develop a new plan. Relationships also needed to be healed as she had let anger/rage erupt during times of hormonal instability. She needed to learn that she had to take a lot better care of herself and to listen to her body when she needed to rest and be calm. She joined a pituitary/endocrine disorders support group to be able to talk with those who actually know what life is REALLY like for patients. Therapy helped her learn to listen to herself, ways to more clearly communicate with her doctors and others, and most importantly respect that inner voice that would help guide her on her continued life journey.

You can read more about Linda’s book here.

Photo by Frank Tasche

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