I Have a Tumor…So Now What? The Mental and Emotional Side of Pituitary Disorders

An article from Marriage and Family Therapist,  Mental Health expert and author Linda M. Rio, MA, LMFT  –  As a mental health clinician my job is to listen to the sometimes intense and very personal emotions people have, then help them to develop healthy skills and a plan to cope with their life, their emotions. The diagnosis of a pituitary tumor is serious not only for the patient but also family and friends of that person who often has a lot of emotions upon getting the diagnosis.

As editor/author of, The Hormone Factor in Mental Health: Bridging the Mind-body Gap (2014), my hope was to bring together contributions from top medical as well as mental health, nutritional, and patient advocacy professionals. The words of actual patients help paint a complete picture of just what it is like to deal with this often tiny growth in the head that can have a very big impact on lives. I have found that the emotional and mental health side has often been overlooked or not fully understood by physicians, mental health professionals, or even patients themselves.

One of the reasons many patients have intense anxiety and present to their doctors as highly anxious is the substantial time it may have taken them to get an accurate medical diagnosis of the presence of a tumor on or near the pituitary gland. Often patients have had symptoms for years, even decades, and may have had negative experiences with doctors and/or mental health therapists who have doubted their symptoms. Since human beings have a strong desire to be acknowledged and believed it is disheartening when something feels wrong in the body but it cannot be verified, or takes a very long time to confirm a diagnosis. The often long search for answers also can take its toll on relationships. Marriages that focus intently and solely on finding a medical answer can crush under the strain. Days taken off work due to headaches, painful joints, mental confusion etc. etc. can lead to unemployment and worse.

I presume that those who may be reading this are the “lucky” ones…who have found the expert physicians who have confirmed a diagnosis of the presence of a tumor or other disturbance in or around the pituitary. The question then becomes how to effectively cope both physically as well as emotionally.

Coping skills for any medical illness is a huge topic but there are some important basics to keep in mind. Having a healthy relationship with the chosen doctor(s) is extremely important. Whether it is a highly specialized neurosurgeon, pituitary endocrinologist, or primary care physician it is important to feel confident in their skills. Highly skilled and expert physicians are up-to-date about treatments in their particular specialty. Once the choice for a physician has been made it is important to come to appointments prepared (I recommend having written notes prepared ahead of time) to succinctly discuss concerns with the doctor. It can be sometimes helpful to bring a spouse or friend who can take notes during discussions with the doctor since patients often are anxious during such appointments. Anxiety, even normal everyday anxiety, causes a reduced ability to hear and recollect accurately so bringing an ‘advocate’ can help. It can, however, be frustrating for a patient to experience a physician who has little time to spend with them. If there is a need for more extensive discussion about one’s physical and/or emotional health then choosing a mental health therapist can be quite helpful. A mental health clinician who has knowledge and expertise in dealing with serious medical illnesses can provide the time and space within a trusted and safe environment to discuss medical concerns. It is important to find a therapist who is willing to consult with physicians in order to develop the best treatment plan for each unique patient and their family. Therapy can provide tools for individual patients as well as helping support marriages and families throughout the medical treatment process. Terms like “collaborative”, “functional family medicine”, “integrative care”, and “family medical therapy” are used by those in the mental health profession who have training and skills to work with chronic/serious health issues and used by those more likely to be helpful in understanding pituitary disorders.

Both the mind and the body are affected by pituitary disorders and whether directly or indirectly linked mental health symptoms are common. A team approach for lifelong health is particularly suited for those with pituitary disorders. The team of physicians who are considered expert in their fields includes an endocrinologist and perhaps a pituitary neurosurgeon but also others associated with a pituitary treatment center. Depending upon the length of time to obtain a diagnosis and the severity and type of symptoms a patient may have the team can also include a psychiatrist for anxiety and/or mood management, psychologist or marriage and family therapist for individual and family counseling, and social worker to assist with community resources. Meeting and talking with other patients and family members in a face-to-face support group setting can provide invaluable understanding from those who are also dealing with same or similar health challenges. There are also online support groups and chat rooms available. An important caveat is to find the kind of support that encourages each patient/family member to develop inner resources and positive skill building versus the negative energy that ‘complaining-only’ groups sometimes offer.

There is life after pituitary surgery or living with a tumor. Many people have pituitary tumors their entire lives and never need medical treatment at all! Those who are lucky enough to have received the best medical advice and get a diagnosis of a tumor can and do find ways to live healthy, satisfying lives both physically and mentally.

 

Note: Linda is a Marriage and Family Therapist practicing over 28 years in Camarillo, California – www.lindamrio.com -. She presents at conferences and consults with mental health professionals worldwide to help them understand the connections between pituitary and other endocrine disorders and mental health. Linda is most grateful to Dr. Lewis Blevins, MD, for his contribution to, The Hormone Factor in Mental Health: Bridging the Mind-body Gap (2014)

The book is available through Amazon.com and other major booksellers!

 

© 2015 – 2017, Pituitary World News. All rights reserved.

9 COMMENTS

  1. It would also be good for your audiences to know that sometimes extra anxiety comes from a change in Pituitary hormones such as Growth Hormone Deficiency which can be the result of a damaged pituitary from surgery, accident or it can even be idiopathic.

    I thought I was loosing my mind!!

    • Some of the doctors I have seen in the past 10 years since
      my ordeal with acromegaly,don’t have a clue how to discuss
      or even understand, the emotional roller-coaster, I have been on and continue to ride, to this very day. There are no words to hardly describe even to the average person,
      what its like to deal with acromegaly.Fact of the matter
      I would like to just give them a pamphlet to read about it ,instead of trying to explain to them something so
      devastating. most people in general “just don’t get it!!
      and yes, I too, thought I was gonna lose my mind!!

      • Hi Butch,

        I was recently diagnosed with acromegaly and it has taken an emotional toll on me. I am scared, I fear the surgery and what my future holds. I am also grateful that I now understand why the symptom have been happening so meany years.

        Can you tell me more about b you’re emotional roller coaster and what you have to deal with by having acromegaly?

        • I have been under the weather for a week or so ,so I want to get back with you in a day or so and I will share with you what its been like battling the “beast” called acromegaly. Please let me gather my thoughts and I will certainly get back with you.ASAP

  2. I have Cushing’s Disease. I had a 9mm Pituitary tumor that pointlessly ripped away everything i loved about my life. My spouse, my career, my confidence, my kindness, my body; it changed the look of my face, in turn i couldn’t recognize myself physically or emotionally. The years if no doctors believing something was detrimentally wrong took a toll on me and my love ones. I began to believe i was crazy and just “letting myself go”. At one point I even wanted to take my life because i couldn’t imagine living the rest of my days in that torture. I finally was saved by a team of medical angels in Edmonton, Canada. My tumor has been removed and I’m 15 months post op. Many of the physical symptoms are gone and my mental state has improved. However, my family us still healing from the trauma and I’m suffering from ptsd and I’m unable to cope with the loss of my former life. I have trust issues with new doctors and high anxiety when I’m ill. My body image is horrendous and i sirens most days in a “positive” facade. I am seeking counseling and even without the difficulties of finding the right therapist, i will not give up. That little tumor and little pituitary can not rob me of a fulfilling life forever. I’m going to make peace on day. Me and my brain are going to find common ground. With the help of great doctors, I’m hopeful.

  3. Is it possible to not have any type of surgery done for a pituitary tumor & live a normal life? Can a person die if the tumor isnt removed?? What would happen if decided to just do nothing…..what will happen??

    • Thank you for your comment. You really should seek a specialist, either an endocrinologist or a pituitary endocrinologist, to answer your question.
      Good luck and please stay in touch.
      PWN

  4. Wow, I’m not the only one then. Life sucks after OP. It’s never been the same and I just wanna dissappear. It’s now bin 6 years of hell. One day can be ok then the next one I could be bipolar an go from 0 to 100 real quick yelling or breaking my things in hand. I lost all of my friends and family to it I’m ready for change, it’s just me and my dog living a humble life and coping with what life gives us.

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