This week marks four years since my life changed forever. On Dec. 21, 2013, I was officially diagnosed with idiopathic pulmonary arterial hypertension. My doctor told me I had a few years to live. Since then, I have been holding my breath, waiting for the other shoe to drop.
I wasn’t sure what would happen first, my impending death or the looming breakup of the relationship I was in. Well, that shoe dropped a few weeks ago, and because I am writing this you can probably assume what happened.
After my diagnosis, I developed a new fear. Sure, I became afraid of disease progression and had all of the typical fears associated with living with PH. However, I became deeply fearful that I was now unlovable. At 25, I was handed this devastating diagnosis. My life no longer was contained in a neat little package; it became complicated by uncertainty, illness, and disability.
In some ways, I died the day I was diagnosed. Parts of me had to wither away to allow new parts to grow. Unfortunately, I lost some of my good qualities in the fire — but these metaphorical deaths also allowed something more to grow. My life got cranked up to high speed, and I found myself trying to learn lessons most take a lifetime to discover.
These lessons made it difficult for me to relate to the normal stresses of life. My now-ex was obsessed with success, certainly an admirable quality to have. However, working nearly seven days a week tends to push most people to their breaking point — no matter how much they love their jobs or are focused on pursuing their dreams. It also makes it difficult to maintain a relationship; it became clear to me that his values had shifted. Because he is in sales, he would be upset if he had a slow day at work. Although I wanted to support him, it was hard for me to find the amount of empathy he wanted from me.
I think we both felt disappointed. He couldn’t understand why I couldn’t be more empathic about work, while I couldn’t understand how something like that could impact him so deeply. In the past few years, I have learned that happiness and love are probably the most important things to chase after. I felt frustrated that we didn’t share this lesson, despite going through this awful experience together.
As the years went by, I felt more like an obligation rather than an equal partner. Eventually, I started to hear, “But I’ve stayed with you since your diagnosis,” more and more, only reinforcing my fear that I have become unlovable. It made me feel as if I was unworthy, or as if I was the only lucky one in the relationship. As if I was lucky that someone wanted to stay with me, even though I have a life-threatening illness. Everything else that was once great about me felt overshadowed; I was just a hollow shell.
I now worry that I won’t be able to form any future relationships — partly because of my hot mess of a life, partly because I could never ask someone to get involved with everything PH entails.
Last week, I discovered the Finnish word “sisu,” which seemed to have found me just when I needed it. According to Finlandia University, it is “roughly translated into English as strength of will, determination, perseverance, and acting rationally in the face of adversity. … Sisu is the quality that lets them pick up, move on, and learn something from previous failures. It’s the hard-jawed integrity that makes them pay their war debts in full.”
The meaning behind sisu really resonated with me. It is a trait we discover and possess after being knocked down, whether by a diagnosis or a breakup. Many of us reinvent ourselves after these hardships, becoming a stronger version of our previous selves.
I now find myself having the chance to allow something to die in the hopes of something better growing. Just like after my diagnosis, I have to find myself again; only this time, I have to discover who I am without him, not who I am with an illness.
And if I made it through the last four years, maybe I can get through anything (with the help of a little sisu).
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.