Wednesday, 28 October 2015

The 'S' Word

What comes to mind when you think of the 'S' word? Is it a four letter word, or is it an eight letter word? The word I am referring to isn't a bad word (although it felt like one for a while.) It felt like word I wasn't allowed to use. I thought this word was off limits for me because I haven't "beaten" Pulmonary Hypertension, or because I haven't lived with the disease for over seven years.

The word I am talking about is survivor.

People who have lived with Pulmonary Hypertension for over seven years are considered a 'long-term survivor.' For those of you not living with PH, I can't even begin to explain how daunting it is to know that if I make it to my 33rd birthday I will be considered a 'long-term survivor.' For those of you who have PH, you already know how this pit in your stomach feels. I have only ever seen the word 'survivor' attached to the phrase 'long-term' when referring to PH. As I have mentioned before, there are not any treatments available that provide a chance of remission or a cure for PH.

When I was diagnosed the specialists came into the room and slapped an expiration date on me. He said I have " about 5 to 10 years." I asked "5 to 10 years for what?" Dying clearly wasn't on my mind. Sure, I Googled the disease before I went to my appointment, but me? Fatal disease? Part of me thought that couldn't possibly happen to me. But I guess it did happen to me, and it is happening to me. Most of us do not get the chance to beat the disease, and are therefore not often considered a 'survivor' unless we beat that crummy expiration date that doctors try to pin on us.

My question is why not? Why are we  not considered survivors the day we are diagnosed?

How do I go from a doctor's appointment where they discuss putting me on the transplant list as 'insurance,' and try to maintain a relatively normal social life? What do I have in common with my peers? Suddenly we are forced to find the fine line between living and dying, and balance it in a modern world. Pay your bills. Take your pills. Don't have an emotional breakdown in public. (Although, it is totally okay to cry in public. I have seen my fair share of people cry at night clubs before I got sick, and it was mostly over guys and french fries.)

How do you love something when you feel like it betrayed you? For me, it became incredibly hard to love myself after diagnosis. After diagnosis we have to try and learn to live with ourselves (and our diagnosis) the best we can. Suddenly our bodies are different and we rely on medication. The most effective medications have horrible side effects, are quite visible, and require that the medication is administrated 24 hours a day, everyday. You also never get a break from the equipment, or a vacation from being sick. Some of us also require supplementary oxygen, which comes with its own separate handful of problems. (Like "do I have enough oxygen to go shopping with my friends? What happens if the power goes out?") Suddenly our bodies are different, along with our lives and what we thought would be our future. I remember feeling as if I could physically feel my body betraying me when I first diagnosed. Worse than that, I felt like everyone could see my body crumbling away. It was hard to love myself, or believe that anyone else could love me. I felt invaluable because my body, for whatever reason, decided to self destruct. After diagnosis, I feel like many of us question our self worth and face self-esteem issues.

We have to try learn to accept, and hopefully love our bodies, despite all the things we might require to stay alive. I learned that I could not love others if I did not love myself. (I know how cliche that sounds, but there is a reason so many people offer this advice.) While I still struggle with trying to accept all the changes in my life, I am also less hard on myself. Superficial things don't hold much merit anymore. Sometimes you just have to accept things for the way they are. That way you can move on and really enjoy what is happening in front of you in this very moment. My boyfriend told me a few months ago that I wasn't affectionate anymore. Truth is, I hadn't been affectionate since after my diagnosis. I was scared he could feel my body betraying me when we hugged. Could he see the expiration date stamped on my body? I also had a hard time really connecting to him. I was tuned out a lot. I was in my own little world full of fear and depression. I still have those days, but I try to focus on living in the moment. I was so closed off, my boyfriend wasn't sure I loved him anymore. I realized that I had shut him out because I was so scared of him leaving me because of my diagnosis. I felt so unlovable, and it was easier to shut him out so I couldn't get hurt in case he decided he couldn't be with me anymore. I learned that it wasn't my diagnosis that was pushing him away, it was me.

Not only have I battled physical obstacles since diagnosis, but emotional. I know that I am not the same person anymore, and I doubt anyone who goes through this experience could be. In fact, I think the core people in my life have changed as a result of my diagnosis as well. They say death changes you. Well, what do you think happens when you get an invitation to the Grim Reaper's party instead of the standard surprise party? Obviously you have time to think about a party that you weren't really planning to attend yet (or even prepared to go to.) This is what I mean about the fine line between living and dying. We are constantly trying to balance both, and still be functional. "Did I leave the stove on? I need to pick up dog food. Should I make a living will?" The last thought shouldn't be something I have to worry about, but it is.

When I was first diagnosed I noticed how easy it was to stay in bed, not change out of my pajamas, and make excuses not to do things with the people that I love. It was easier to stay in bed, be alone and wallow with my thoughts. Once I started to stabilize I was still avoiding doing things that I would genuinely
enjoy. I had this idea in my head that I had to wait for things better. By better, I didn't just mean my health stabilizing. I meant I was waiting for some kind of miracle to make the PH go away. I felt like I couldn't enjoy life unless I was perfectly healthy. I have started to accept my health for what it is (although it is challenging.) When I was diagnosed I was very sick. I was diagnosed somewhere between a stage 3 and stage 4. There is no stage 5. As you can imagine I was in rough shape. I went to bed each night terrified I would die in my sleep because of how sick I was. My heart was severely enlarged. Even with oxygen walking a foot to the bathroom was a major challenge. Because I was so sick, I am starting to really appreciate how far I have come. It isn't perfect, and of course I wish I could be better, but where I am now is so much better than where I was when I was first diagnosed and I am fortunate it for that. I've slowly started to realize that I am doing okay, and that there is no better time than now to start living. I am not sure what my health will be like in the future, so I can't waste anymore time waiting for things to get better before I start living again.

This might sound a little strange, but I don't identify with the colour periwinkle or zebras (things affiliated with PH awareness.) I consider myself more of a unicorn, and I like the colour seafoam. I also don't identify with the word 'patient.' I have had to correct people from referring to me as one because my name is Serena and I am so much more than my diagnosis. (Unless I am in the hospital, I am not a patient.) It took me a while to come to terms with the word 'survivor,' and perhaps you don't feel comfortable referring to yourself as one. Through this experience I have come to realize that we are constantly learning in life, regardless of conditions. After my diagnosis I had to do a lot of re-learning. I am re-learning to live again. I am learning how to live a different life. The lessons that I have learned are things that can not be taught, but only gained through experiences (which are sometimes very painful.) What I have learned is that if you can continue to live, learn and love despite your diagnosis, which could very easily make a person hard, you are a survivor. Even if the word survivor is not a word that you are comfortable with, please do not deny yourself the love and recognition that you deserve. If you continue to live, love and even laugh despite everything; you are at the very least a bad ass.


  1. Serena, thank you for writing this! Sometimes I can't put my thoughts into words and this is exactly how I've been feeling as of late. I celebrated my PH anniversary this month. It's been 8 years. I feel good, but there are days when I still get scared. The idea of hanging out with friends can seem daunting, only because I do get tired. Sometimes I'll mention it, but I smile through the pain. To take my mind off of things, I just remain positive, mostly through music and writing. Photography too! :D

    My medicine regimen can still seem like a chore. Which is why I always have a pill box and constant reminders throughout the day to take it.

    I do my best to not let fear hold me back! I don't want to live with regrets. At the same time, I think about every situation thoroughly, step by step. But I hate overthinking. I constantly do it! :P A lot of it has to do with guys and me being shy. Haha.

    I really appreciate your blog. It's a safe place for me! Thank you again and I hope you're well. :)

    <3, Bernadette (heartbern)

    1. Thank you so much for reading and commenting! I am almost 2 years past diagnosis, and some days things don't feel any easier. I think it is normal to have those days. I don't think we give ourselves enough credit for being young adults and facing what we do. Good for you for staying creative! It is one of the most positive and empowering things you can do for yourself.

      I hope that you can feel less shy around guys. Dating is always tricky, even without PH being thrown into the mix. Hopefully you will find someone who sees you for the bad ass that you are.

      I am glad you are able to find a safe space. That was my intention when creating it, so I am glad to hear your feedback.

      Stay well


  2. Spot on. explaining the complicated issues of chronic illness. I don't really look sick except when I'm out and about with o2 tanks, especially flying having to lug the Tyvaso breathing contraption and portable oxygen concentrator which is already over the maximum carry on bags allowed. Forget about purse or or something to read (I've gotten good at compartment lizing, I used to be a flight attendant so I'm not intimidated. Before I keep going on, I am GRATEFUL to still be is not easy but I realized very early on, do I want to live or live like I'm dying? I am a 9 year survivor. YAY! Thanks for your writing about yours, mine....this disease. after

    1. Hi Cari,

      Thank you for taking the time to read and comment.

      I am sure that traveling with all the extra equipment is a pain, but I am so glad to hear that you are still traveling.

      It is wonderful to hear from a 9 year survivor. If you are interested, please let me know if you would be interested in writing about yourself for a PHighter Friday :)

      Kind regards,


  3. I've been a childhood cancer "survivor" for 32 yrs. but did I survive it? I'm still dealing with the effects of the treatment, and it gave me PH. So what exactly did I survive? My illness just morphed into something else. The word survivor does not resonate with me. I prefer Warrior or bad ass mother fu#k&er!

    1. I can understand why the word doesn't resonate well with you. Thank you for sharing and taking the time to read and write. I think you sound like a total BAD ASS!