Breaking Points

Breaking Points

In Life with PH
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.

9 comments

  1. G says:

    Just as background… My ex-wife was diagnosed with PH a bit less than 2 years before we separated and later divorced. In my case, I can honestly say our relationship ended for reasons unrelated to her PH diagnosis, though I don’t doubt she may have felt that in some way perhaps it was related. I left my wife, and with the problems we had, it was something I should have done years earlier. I did, and probably always will, feel some degree of guilt for leaving her while she was facing this condition. It was gut-wrenching to leave and was the most difficult thing I’ve ever done. But ultimately, I knew I wasn’t leaving her because of PH, and I didn’t feel I owed my life and happiness to her out of obligation because she had this condition.

    So perhaps this is coming from an odd source, but what your ex said to you about “well I’ve stayed since your diagnosis” is awful, and I’m very sorry you experienced that from the one person you’d (rightfully) expect full support from. You clearly realize you are better off without him, and I admire your strength. Best wishes to you, and happy holidays.

    • Serena says:

      Thank you for sharing a bit of your background. I can only imagine how hard it must have been to go through that for both you and your ex-wife. But you are completely right, you cannot stay with someone if things aren’t working (regardless of how complicated the situation may be.)

      Thank you for the kind words and support.

      Wishing you a happy New Year 🙂

  2. Jeanne mattar says:

    Hello,
    May I say I am proud of your decision to make the big step of standing on your own and hope you find a person who would truely love you and care for your good quality and take care of you as time comes, if you are anything like myself I have good days and bad ones, I am very fortunate to have a real good husband that accepts the good and bad, at the moment I am nursing a fractured hip, operation and rehab, (tripped over the oxygen tube) lots of ups and down.
    I wish all the very best in life be positive
    I wish you

    • Serena says:

      Thank you for the kind words. I hope I find someone too, but I understand how PH might scare a lot of people away.

      I am so glad to hear that you have a partner that accepts the ups and downs of PH. Having support is so helpful on this journey.

      Thank you again for the kind words and for reaching out.

      Wishing you all the best and a happy New Year 🙂

  3. Cam says:

    Hello Serena,
    I’m so thankful you wrote this as it is about 100% relatable to me! I was also diagnosed in Sept 2013 with PH (aged 28 – secondary to CHD). It was made clear at that point that I wouldn’t be able to have children and due to complications, I ended up having a hysterectomy too – adding injury to insult! I knew almost immediately that I had changed for good – I was never going to be the pre-diagnosis version of myself again. My partner at the time did the best he could but was pretty much a deer in the headlights to it all – as time went on I could sense that he was avoiding ‘that’ conversation because he thought it would make him a bad person. So I made the decision to end things myself, a little over a year ago now. We just weren’t having the same conversation anymore – I changed, he didn’t, it was just exhausting and sad.
    Only after a year of being on my own now do I realise how right of a decision it was – I have had a year of focusing solely on my mental health – processing the grief and trying to re-adjust to completely new life I now have. The future is a completely blank canvas, I have no idea what is in store for me but for the first time ever I am finding I am just content to live for today.
    Sisu is a perfect word for the long, tough trek back to mental strength – I realise now that resilience and fortitude are very low-key traits, with time and patience, I am being renewed by them.
    I too think that if I have survived all that has happened, then I’m sure I’m ready for whatever is to come to, almost daring to feel a little excited too! 🙂
    Cam x

    • Serena says:

      Hi Cam,

      I am glad to hear you took the steps needed in order to best take care of your self and focus on you, your needs and your mental health. Being diagnosed with PH entails a huge grieving process (one that feels like a roller coaster, at times.)

      It is a bit exciting to have a blank canvas to start over on, isn’t it? Hoping you find something beautiful to “paint.”

      Wishing you all the best, and lots of excitement in 2018. 🙂

  4. Gustavo Hernandez says:

    Hi Serena I completely feel identified with your feeling of not being good enough to be with someone, I also have 4 years diagnosed, I was diagnosed in October 2013, when I was diagnosed I had same feeling, my whole world came down in pieces like a building being demolished, a month after that I was released from the hospital I decided it was time to end my relationship, so I did and I have been single ever since, it’s hard to find someone who can understand what it is living with this disease and that we have good days and bad days and in my case I have more bad than good days, anyways just wanted to share my personal experience and I think that feeling of being unlovable we all go through it when you just find out you are more sick than you ever expected, but with time you understand that if someone comes along the way it will be someone who will try to understand you and help you to the best of his abilities. Great article and hope you would like to add me as a friend on your Facebook acct if you got one. Thanks.

    Gustavo Hernandez

  5. Joanne says:

    Serena….wow. What an incredible article. I was diagnosed at 34 and because I was the 3rd person and knew a lot about PH, I knew I could never have children. I’d been married for 5 years at that time and it was crushing. I was paralyzed for a while, but realized that life was marching on. I’m glad I was able to recover and move on because here I am, 19 years later. I was diagnosed with 2 other serious illnesses that impact me more on a daily basis than my PH does. I worked full time for 13 years, but after the additional diagnoses, I could no longer manage the daily grind and went on permanent disability. My spouse, who vacillated between being supportive and quietly resentful, couldn’t handle this change and became openly resentful, telling me in the evenings that he wished he could stay home tomorrow too. He started getting angry when I wouldn’t participate in certain activities and eventually lost respect for me. It’s time to leave when the person who promised to care for you starts making your life as miserable as possible. I was terrified, but I left my marriage and my home 3 years ago. As I’ve aged, I realize that illness and disability come to many of us. Dating at 53 has shown me that. So, I say good for you, moving on, growing and learning as you go forward. Look up the Haruki Murakami poem that starts, “And once the storm is over…”. I’m betting you already know it :-). And stay hopeful for love. I know two PH patients that met and fell in love and are soon to be married. I know a PH patient who’s now a doctor. I’m working on a book about a notorious relative who lived in New York at the turn of the century. Keep going, you are so talented!!! Cheers to you!

    • Serena says:

      Hi Joanne,

      Thank you for sharing a bit about yourself with me. It is always so hopeful to hear from people who have weathered the storm longer. And thank you for sharing the poem, this really resinated with me, “When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.”

      Thank you again for the kind words. I wish you the best of luck with your book.

      Warm regards 🙂

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