How I Have Dealt With PH Mind Games

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by Colleen Steele |

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If you feel like pulmonary hypertension is messing with your mind, you are not alone. Over the years, many have expressed similar concerns. 

I have been a member of a Facebook group called “Families of Children with Pulmonary Hypertension” since my son’s 2008 diagnosis, and this month, I am celebrating two years as a Pulmonary Hypertension News Forums moderator. 

Throughout these years, I have gained a lot of knowledge and insight from online support groups. At first, my participation was mostly one-way. I needed information and support, but ironically, I sometimes felt guilt or worry about sharing my own thoughts and experiences. I was afraid that my son’s good days might upset others who were going through bad ones, or that his decline would discourage caregivers and patients who were holding on to hope.

I have personally struggled to overcome those conflicting emotions, but I’ve learned to not let them affect my mental wellness and limit the emotional healing and strength that support group membership can provide.

My participation has taught me I benefit most when I share all aspects of my experience. Being open about the good and the bad offers much-needed balance. Advocacy and emotional stability require sharing both sides of the story. There is little value in a picture half-painted.

Overcoming the fear of open and honest communication may help you discover that the bigger things wreaking havoc on your mental wellness might not be so unique to you. Be assured, I have never experienced a PH support group member saying to another, “I wish you didn’t tell me that!”

My son no longer has PH since receiving a heart and double-lung transplant in 2014, but as his caregiver, I still grapple with the heartbreaking fear that my son might die before I do. I have spent way too many holidays panicking about how special or not I was making them. I’ve obsessed over taking pictures of everything from mundane moments to special events because memories must be captured.

Even when the bump in the road is small, and for the most part, my son is doing well, I still sometimes shed tears thinking about what life would be like without him. I’ve witnessed too many families lose a loved one to PH or post-transplant complications to not have a strong understanding of that kind of grief, and the possibility that I might someday have to endure it. 

And with that realization lies the struggle to focus on and appreciate the here and now. Do not lose today’s happiness on tomorrow’s sorrow.  

A PH community member recently shared a column from Verywell Health that refers to grief before death as anticipatory grief. It is common among people facing the death of a loved one or their own. This information has helped me come to terms with my own fears.

Sharing feelings like this is an example of why I still advocate for PH and maintain my spot in the community — because I believe my experience can offer guidance and hope to others, as they continue to do the same for me.

If you are a transplant recipient or a caregiver and feel you must give up your PHamily because you are no longer living with the disease, think again. I recommend taking the next step by reaching out to a transplant support group.

Lung Transplantation: Taking Flight with New Life Support Group” is a Facebook group I have benefited from, but many other choices are available. 

Whether you or a loved one are on the PH or transplant journey, there is no need to walk it alone. Because May is “Mental Health Awareness Month,” it reminds us of the importance to advocate not only for our physical health, but our mental health as well.

“Do not judge my story by the chapter you walked in on,” is a popular quote by an unknown author. As a PH patient or caregiver, you might feel like making this your mantra. But in the right support group, it won’t be needed. 


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, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


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