When My Doctor Told Me That My Situation Was Hopeless


My obsession with hope began when it was taken away from me nearly four years ago. I was alone in a doctor’s office, watching snow fall through the window. My parents had been taken out of the room to talk privately with my doctor, which I correctly assumed was a bad sign.

A few moments later, my parents and my doctor returned to the office. It was then the doctor officially shared the diagnosis with me of idiopathic pulmonary arterial hypertension (IPAH), and he informed me of my life expectancy. Speechless, I stared out the window silently. It was then that my mom said, “It will be OK. We will have hope, and we will get through this.”

The doctor responded with, “This disease is not cancer; hope will not help you.”

I understand that deciding to become a pulmonary hypertension (PH) specialist probably isn’t an easy choice, and perhaps some doctors become jaded over time. It must be difficult trying to treat patients with an incurable, progressive and often fatal disease with the limited resources. And I can only imagine how much death and devastation these doctors must see. But I don’t think that gives anyone the right to take away someone’s hope.

Obviously, my optimism was fragile, and I felt the remaining hope I had break that day. The disease took away my hope, but the doctor made it more difficult to rebuild it. What do you do when your doctor tells you your situation is hopeless?

I got angry, and my anger ignited me to search for hope.

It was during this time that I began The PHight or Flight Project, where I began finding exceptional people with PH, and asking them to share their stories on my blog. Being exceptional wasn’t just about being a long-term survivor; it was about an attitude, and finding ways to live again after such a heavy diagnosis.

Unfortunately, I’ve learned that hope is hard to hold onto. Even though I was surrounded by so many encouraging stories from my fellow PHighters, I would always go back to feeling like a lost cause. An inspiring story might motivate me for a couple of days, weeks or maybe even a month, but eventually I would feel my hope slip through my fingers like grains of sand.

I felt especially hopeless the first year following my diagnosis. I lost a lot of things, including my career, and spent most of my time crying in bed. But eventually I found my courage, and it was hope that told me to start to trying to live life again instead of just living in fear. I realized that I was letting fear hold me back, and only I could decide whether there was any point in holding onto hope.

Last week, I realized how important hope has been to my life these past few years. If I never found the motivation to leave my bed and try again, I never would have been able to experience things like feeling proud of  accomplishments at work (something I never thought I would be able to say again), seeing a beach again, or most recently, dancing for nearly two hours at a concert.

 

As I write this, I am currently nursing what feels like a hangover for the chronically ill. I spent my Friday the 13th in Toronto, and went to Massey Hall to see Paramore – something I would have been too afraid to do just a few years ago. Hope encouraged me to try to live again to the best of my ability. I even managed to dance for the first time since my diagnosis, a dream I was afraid to try again for years because of my physical disabilities. It was so freeing to forget about all my fears – even if it was only for one song at a time.

Whenever I start to feel hopeless, I listen to the song “26” by Paramore. They performed that song the night I saw them, and there was something so emotional about hearing nearly 3,000 people sing along to the lyrics. Maybe we are all just chasing that piece of hope that belongs to us and remains unshaken by the hardships of adversity. And maybe these lyrics will help you, too.

“Reality will break your heart
Survival will not be the hardest part
It’s keeping all your hopes alive
When all the rest of you has died
So let it break your heart
Hold onto hope if you got it
Don’t let it go for nobody
Hold onto hope if you got it
Don’t let it go for nobody
And they say that dreaming is free
I wouldn’t care what it cost me”

“26” – Paramore

This post was originally published on Pulmonary Hypertension News.

We want to hear your story. Become a Mighty contributor here.

JOIN THE CONVERSATION

Related to Pulmonary Hypertension

ph aware banner

I’m Aware That I’m Rare: Victor Test, MD (Part 2 of 2)

Victor J. Test, MD is a professor of medicine at Duke University School of Medicine. He treats patients with pulmonary vascular diseases including high blood pressure of the lungs (pulmonary hypertension) and unresolved blood clots in the lungs (pulmonary embolism). His research specifically focuses on chronic thromboembolic pulmonary hypertension. In this episode, Dr. Test discusses [...]
ph aware banner

I’m Aware That I’m Rare: Victor Test, MD (Part 1 of 2)

Victor J. Test, MD is a professor of medicine at Duke University School of Medicine. He treats patients with pulmonary vascular diseases including high blood pressure of the lungs (pulmonary hypertension) and unresolved blood clots in the lungs (pulmonary embolism). His research specifically focuses on chronic thromboembolic pulmonary hypertension. In this episode, Dr. Test discusses [...]
ph aware banner

I’m Aware That I’m Rare: Ashley Schroeder

Ashley Schroeder is a wife, mother of two daughters and familial pulmonary hypertension patient of five years. Ashley discusses being diagnosed, improving beyond what doctors expected, the importance of finding the right combination of medication and why raising awareness of pulmonary hypertension is so important. Transcript: Hi, my name is Ashley Schroeder and I’m from [...]
ph aware banner

I'm Aware That I'm Rare: Brian Hanna, MDCM

Brian D. Hanna, MDCM, PhD, FAAP, FACC, is a board-certified cardiologist and Director of the Section of Pulmonary Hypertension at Children’s Hospital of Philadelphia. His research Interests include: natural history of pediatric pulmonary hypertension, treatment trials for pulmonary hypertension, and the role of pulmonary hypertension in congenital heart disease.  Dr. Hanna discusses pediatric cardiology and [...]