How PH Changed Me, from Being More Compassionate to Managing PTSD

Colleen Steele avatar

by Colleen Steele |

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When my son was diagnosed with pulmonary hypertension (PH), I noticed a change in how people interacted with me. They hesitated before sharing personal problems, and if they did share, they would often apologize: “I shouldn’t complain because it’s nothing like what you are going through.”

What I sincerely try to explain is that I don’t make it my business to rate people’s problems. Life is hard, and most people are going through something. We can all relate to feeling sad, scared, angry, frustrated, etc., and the best way to work through those moments is by sharing our feelings with others.

It’s ironic that we avoid sharing our problems with people we think are carrying bigger burdens, because those are probably the best people to seek consolation from. Living with my son’s health concerns has honed my listening skills and taken my compassion for others to a higher level. Being the listening ear and shoulder to cry on also helps me feel like my life isn’t so one-sided. It’s good for my mental wellness to not always be on the receiving end of compassion, but to also be the one providing it.

Be prepared, however, that I might get teary-eyed along with you. This is a change in myself that took some getting used to. I’ve always been a sensitive person, but tears were usually shed in private. That quickly changed when my son became seriously ill.

My new lack of emotional control often took me by surprise and caused me to feel embarrassed and apologetic. I also feared that crying made me look weak and incapable of being strong for my son. I eventually realized it takes less energy to cry than it does not to. Now I think of crying as a way of conserving my energy. It’s a healthy human response and, as a doctor once told me, “Colleen, I would be more concerned if you weren’t crying!”

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The author of this quote is unknown, but it is one that I have come to favor: “A strong person is not the one who doesn’t cry. A strong person is the one who cries and sheds tears for a moment, then gets up and fights again.”

Caring for my son through his PH and post-transplant experiences has changed me in more positive ways than I ever would have believed possible. I’ve come to respect the hypersensitive, compassionate, caring person that I am now, but inevitably, I am also challenged with what I believe to be post-traumatic stress disorder (PTSD).

I am often asked if I worry less and feel more relaxed since my son’s transplant. For the most part, the answer is yes, but after 10 years of dealing with health emergencies, my brain is programmed to always be on alert for distress. I sleep better, but after years of listening for my son during the night, I still wake at the slightest sound. The same problem distracts me from the simple pleasures of reading a book or watching television, and multitasking is much more challenging. It’s taking longer than I expected to learn how to live without constantly being worried.

Having spent a lot of time in hospitals, where it’s not uncommon to approach and comfort a distressed stranger, I find myself fighting the urge to do this in the “real” world.” It’s been a struggle to balance my compassion in a healthy way and not always wear my heart on my sleeve.

A common symptom of PTSD is sensitivity to certain noises. For five years, my son was on an intravenous medication, Flolan, and the pump that it ran on had an alarm to notify us if it stopped functioning. To this day, if I hear a sound similar to that alarm, my heart rate increases, and I start to feel anxious. Sounds that mimic those heard in hospitals also trigger the same response.

PH has changed me, but it surprises some people in the way that it hasn’t. I still occasionally sweat the small stuff and get annoyed by pet peeves and idiosyncrasies. I’ve had people remind me on days of ordinary annoyances that I should be grateful that my son is doing well. Trust me, I need no reminders — but I am still human. If I am stressing over something trivial, feel happy for me, because not having more pressing issues weighing on my mind is a welcome change.

Change is difficult, especially when it is so personal. The book “Chicken Soup for the Soul: Think Possible” quotes an unknown author: “Getting over a painful experience is much like crossing monkey bars. You have to let go at some point in order to move forward.” I had to let go of the person I was before PH in order to move forward. In doing so, I proved to myself that although I have changed, I am not broken.


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.


maureen avatar


I admire your courage with everything you have been through pulmonary hypertension, along with copd is no fun, i still go to rehab for pulmonary after 2 years being diagnosed

Colleen Steele avatar

Colleen Steele

Thank you, Maureen! As a mother/caregiver, finding my courage has meant allowing myself to express my emotions instead of hiding them. I have learned a lot more about courage from my son and other's such as yourself, who are battling this disease.

V.R. Peterson avatar

V.R. Peterson

Thank you for this timely column. I didn't experience the stark terror for as long a time as you did, but the four years before my son's PTE surgery was enough that I still have to remind myself that he's no longer dying. Most of the people I know just don't get it. They think, because he's doing better now, that I shouldn't be affected by PTSD. If only it were that simple. It does get better with each passing day/week/month/year, but I still have moments where my body reacts as though he weren't well. It helps to know I'm not alone when I experience these moments.

Colleen Steele avatar

Colleen Steele

V.R., you are definitely not alone! Your experience was traumatic and not one that you will soon forget. As you mentioned, living with the memory does become more bearable but inevitably there will be certain triggers that will force a reaction out of you. Also, you are a mother and worrying is what we do. It's a reaction that comes from love and there is nothing wrong with that! Thank you for your comment!

Jimi McIntosh avatar

Jimi McIntosh

Thank you, this PTSD is nearly what you go thru after being in the military. The sounds, the scenes and the memories, never really go away. You learn to live with the ups and downs of life, always aware that everything is subject to change.
Thru your personal suffering, you give hope and encourage other suffering people.

You never really relax and take
things for granted. This is your new normal. I wish this on no one. Only those that are on this journey or caring for them can understand.

Colleen Steele avatar

Colleen Steele

Thank you Jimi, for reading the column and for commenting. It wasn't until my son was post-transplant that I recognized that PTSD can develop in anyone, not just those in the military. PH is a type of battle though, isn't it? The "new normal" isn't an easy adjustment but somehow we find the strength to survive.


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