When my son was diagnosed with pulmonary hypertension (PH), his doctors were proactive in caring for his physical health and forthright about maintaining his mental wellness. He was 8 years old and facing adult-sized concerns and realities.
To help process all that was happening, they referred him to a child psychologist. As a family we routinely visited one a few times every month.
The appointments began with a group meeting that would lead to individual sessions. We primarily discussed what Cullen was going through and how, as a family, we were dealing with it. The doctor guided us over emotional hurdles and taught exercises that could help relieve anxiety.
We discovered that maintaining mental wellness can be hard work. Scheduling appointments around work and school was challenging. Discussing our feelings was even more so, and sometimes intense. I even caught the doctor getting teary-eyed a few times. When Cullen was placed on the heart and double-lung transplant list, the appointments became focused solely on him.
Unfortunately, having more time devoted to sharing just his thoughts was not in Cullen’s comfort zone. He dreaded the psychiatry appointments and his trepidation increased as he grew into a teenager.
Being an introvert made these visits extra difficult. Cullen would much rather think about and examine things in his own mind. When he shared his feelings, he preferred it to be with a select few — his parents, brother, and best friend. Cullen felt strongly that this process worked well for him, and that professional intervention was unnecessary.
After his transplant, it was a toss-up which was more painful to endure, the excruciating breathing treatments or visiting with the psychologist. Caring for his mental well-being was considered critical in helping him maintain the responsibilities of keeping his new heart and lungs healthy. The appointments were no longer a suggestion but a requirement.
Cullen has always put forth great effort into being a compliant patient, but sticking with his therapy sessions was his Achilles’ heel. The introvert in him felt violated. He would much rather end a long day of appointments and physical pain with quiet reflection and relaxing activities that did not require conversation.
He wished that the doctors would take his personality and maturity into consideration. Cullen wanted the freedom to decide when he needed to be seen, and when other therapeutic venues would be more helpful. For example, his therapy sessions frequently followed those painful breathing treatments. Rather than discuss his feelings at that time, Cullen would have preferred to quietly listen to music or watch television.
In Cullen’s defense, I agree that silence has its therapeutic benefits and is not always a sign of avoidance. Sometimes, it is just what a person needs.
An example that I shared with the psychologist was Cullen’s reaction to an unexpected visitor during a long PH hospital stay.
He was feeling a mix of sadness and anger until a young man knocked on the door of his hospital room. No words were spoken, just a nod toward a gaming system in the corner. Cullen smiled big, quickly sat up in bed, and the two started playing a video game. The volunteer returned a few times over Cullen’s stay. No words were ever spoken, not even an exchange of names. It was a form of emotional support that suited Cullen well. I noticed an improvement in how he handled the rest of his hospitalization.
His special visitor explained to me that he was once a pediatric patient and understands the benefits of silent distractions. His gift of time, but not words, helped to clear Cullen’s mind and rejuvenate his spirit.
Talking through his problems was not the only struggle Cullen faced, so was the decision to take an anti-anxiety medication. When recovery became more challenging, he agreed to give this offer of extra help a try.
It worked. My doctor had prescribed a low-dose anti-anxiety medication for me when Cullen was listed for transplant. As I explained to Cullen, there is nothing wrong with accepting that kind of help. It is as valuable and important as any other treatment.
Once past the rough road of transplant recovery, Cullen’s doctor approved his request to discontinue the anti-anxiety medication. He has done well without it for four years, but should he need it again, I hope he would not hesitate.
Cullen is in college now and studying to become a social worker. He enjoys his psychology classes and is looking forward to the day when he can apply both his educational and personal experiences to helping others — especially fellow introverts.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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