So, What Might Make Having PH Worth It?

I have really struggled coming to terms with my diagnosis of pulmonary hypertension. The first year was especially difficult. I felt frustrated that I had a lung disease when I had never smoked in my life and did everything “right” growing up. It didn’t seem fair. I felt heartbroken thinking about my future, feeling as if I wasted so much of my past on investments I would no longer be able to cash in. I felt isolated and I felt scared.

It was clear that I was struggling. I was having more bad days than good. I cried before I went to bed, and again when I woke up in the morning. At 25, I can’t say that I was OK with what was happening, and there is little support for young adults facing such a heavy diagnosis. One doctor had even suggested that I had already lived a full life. The lack of training available to those taking care of me would become even more evident.

Eventually, one doctor suggested I go on anti-depressants. I politely declined, wanting to try a more holistic approach first. Besides, I figured, of course I was devastated. Not many people get to mourn so many of their own losses. In a flash I had lost my career, the potential to be a parent, and my future — or at least what I thought my future would entail.

I started the journey of turning to many alternative sources, some of which were incredibly helpful. In general, the practitioners I saw who focused on the holistic were more empathetic, and better equipped, to talk to me and help me emotionally.

One of these practitioners was a hypnotist and life coach. (For those of you who were wondering, yes I was hypnotized, and no I didn’t cluck like a chicken.) Her office was far less imitating, depressing and sterile than a doctor’s office. Her office was setup with water bottles and snacks. There were stuffed animals to hug on a reclining leather chair, along with a blanket and various essential oils. The walls were covered with inspiring quotes.

During one visit, I mentioned I was having a really difficult time trying to accept my mortality, and the possibility of becoming even more disabled. She asked me, “What is one thing about your illness that makes it all worth it?” She wanted me to name at least one thing that has happened as a result of having pulmonary hypertension that was a positive.

I answered that I had become closer with my family.

I spent more time with both of my parents, both individually and together as a family. Although I am sure we could have all happily lived without pulmonary hypertension, it did push us together. I got to know my parents better, and looked forward to the weekly outings they planned with me. My father and I have made playing video games a regular routine, which is one of the only things that takes my mind completely off everything else (for whatever reason, it makes my sats — oxygen saturation — amazing!).

I always knew how great my parents were, but I learned that they were the best support system anyone could ask for. I really do feel like I had the best parents in the world.

And maybe that makes this disease worth it.

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.