Life With PH

Destroying Myself

I hope y’alls week has been good so far. This has been a highly emotional week for me because of changes in my personal life. It’s all just overwhelming but its life. Just letting y’all know that you have only TEN DAYS LEFT IN THE NAIL COMPETITION. Pleeeeeease enter so you have a chance to win a Just Breathe shirt and beauty prize pack! We have very few entries so at least try. πŸ™‚


Moving onto a more serious subject, I’ve been thinking about personal relationships lately. What they mean to us as a patient and more importantly the other person that has to “deal” with us. I’m 21 years old so a lot of dating questions get thrown my way everyday. Your boyfriend must do this, you would be so cute with this person, how is dating going…blah blah blah. I’ve been single for a while now because I can just honestly say I’m picky and who wouldn’t be with what I have to deal with? The last person I dated knew me pre-diagnosis then had to “accept” me during and after my disease. He didn’t do well with the accepting part and that’s an understatement. My disease was weight on my shoulders and was something that clouded his thinking. Pulmonary Hypertension was parked right in the middle of our relationship. This wasn’t by choice but instead because of coping and I knew he didn’t accept me so why should I accept myself? He hated what my body and life was becoming and I could sense it. The relationship crumbled along with my mental status. What a gem he was…hahaha.

Now here I sit with Rocco at my side and a list on my bulletin board of everything I want in a man. I’m patiently waiting and hoping that someone out there maybe, just maybe will be able to accept me. And then it hit…I’m 21 years old. There is no one my age who needs or want someone like me. I am an old lady trapped in a young persons body. I am not concerned with parties, doing whatever I want, living with whoever I want, drugs and random guys. I dont have the physical, mental or moral energy and time for that. I’ve got to balance medical bills, insurance, money for college and my actual health. I can’t just look for any guy, I’ve got to look for someone who is chasing a great future because its going to take his and my salary to keep me alive. I’ve got to look for someone who is ok with my medical bills that have piled up and overall what my body is about to become. I will deteriorate and fall apart one day which is something I’m prepared for but Lord knows what he could think. Bottom line, I don’t blame people my age not finding my life style attractive, they deserve a young person. It hurts, not going to lie but its the truth.

But how do people and PH balance in a relationship? Well, from what I’ve observed and a few experiences here and there, PH is never the rock in the relationship. When you give a disease all the attention, the relationship will crumble under that light. There will be times when you need to vent about certain things, there will be times for doctor appointments and procedures and that’s all the time it should get. What if this is a new thing and they still have no clue about your disease or its limitations? This is never a “first date” conversation because that just sends people running. It’s not a second or a third date conversation either or an out of the blue conversation. This is a “when something comes up” conversation that could somehow play into your disease. A guy and I had been talking for almost a week and knew each other quite well except for this one big detail. He asked one night if I played any sports in high school and I calmly mentioned my disease, its limitations and I wasn’t able to play sports. immediately, he was overwhelmed by the info and wanted to know more so I very very very simply explained what PH is, what I do for it and how it affects my future. He didn’t get all the intimate details but he got the outlines for sure. I kept it SIMPLE, and that is key. From then on unless things got super serious he wouldve never known the intimate details, he wouldve only heard about my disease unless I landed myself in the hospital or something. Thats it…if he accepts it he does and if he doesn’t, well then that’s your answer with him.

I’m always so negative about this relationship stuff well because I’ve had nothing but negative guys. It sucks, its reality and I’ve tried and tried to improve myself. Sometimes I turn it back on me which strikes up an insecurity mindset that I’m battling but it’s not an easy cycle…people destroy you which you learn from. Then you start to destroy yourself.


Folllow Haley on Instagram! haleyann92

Enjoy the new song of the week! Disco Lady by Johnnie Taylor! The smooth sounds are relaxing and fun all at the same time.


7 thoughts on “Destroying Myself”

  1. Don’t worry.. You are just 21 and still a baby! Someone will find you. I am 32 and will likely be single forever at this rate. I’m pretty sure I won’t be around long anyways! Haaa!

  2. Very deep blog Ms. Haley. For someone that is only 21 you have a firm grasp way to early on what many of us younger PHers cope with on a daily basis. I have personally experiences everything you have over the course of the past decade, because much like you, I was diagnosed at a younger age. I have had my share of what I thought was going to be forever moments, and I still linger in the purgatory of what ifs when in relationships. If you ever need anything, I am here you can email, call, text, twitter whatever you need to do if you want someone to listen, need a shoulder to lean on, or just want to vent about it all. Like I told you earlier, you need chicken wire, duct type and gorilla glue to help fix up stuffs, I’ve got your back. Otherwise, keep staying strong, independent, intelligent and beautiful.


    1. Sean,
      Aww thank you so much. πŸ™‚ Its hard to keep a firm grasp for sure but if I’m not doing that then I’m falling apart. Relationships are definitely confusing and hard, and it just makes it worse when you meet someone that agitates all of that. I hope you are doing ok. Thank you so much for the kind words, chicken wire, duct tape and everything else. I have your back too! Aw thank you. πŸ™‚ I hope you are staying strong too!!

      1. Of course I am staying strong. It’s what us resilient young folks do. Granted you are younger than me by just shy of a decade, I can still keep up with you ya whipper snapper *shakes an invisible cane and talks like an old cartoon comic grandpa*. Our age group and struggles with PH make us much the recondite of persons with chronic disease. Some fair well while others perpetually struggle. Keeping a balance of positivity and a healthy expulsion of effluvium of negativity is quintessential to our psychological, emotional, and physical well being. Reading your blog, I can unequivocally say you are definitely ablest and living proof that, while tumultuous, you will stand strong. In the future, you will be a fantastic girlfriend, fiancΓ©e, and wife to someone. That individual will have to deal with your idiosyncrasies and as I like to say, “roll with the punches,” but there is certainly someone out there that can.

        Like Loretta said, you are 21 and have some time. Finish that Bachelors and Masters and then go for that solid rock relationship and eventual family.

  3. Hi Haley
    Wow This feels like everything was meant to be,
    I Also have PH, I was diagnosed when i was 5 with a heart Disease then later on it progressed to severe PH. I was looking for something to keep me busy and to keep me sane because I’m in a depressing stage at the moment when I thought I’m going to start my own blog, then I came across yours, its nice to know that there is other people who feel the same and has to go through all the things I have to go through from Medical to relationships to bills to you name it,
    I always felt so alone, I’m 26, and 9 years ago I met the most wonderful man ever, from day one i was open with him and told him all about my disease and all the complications it has in store and that when he falls in love with me that he knows it will never be easy never be the same as ordinary relationships etc etc… well we fell in Love and 9 Years Later we are now Married, taking it day by day, but what I wanted to tell you with regards to your post, I felt very alone I never wanted to go into relationships etc cause I didn’t want to be a burden on someone, never wanted anyone to feel sorry for me, never wanted to complicate their perfect life with my complications
    But somewhere out there, there is someone meant for you! someone who looks past everything someone who will give anything and everything to make you better and happy at the same time, and doesn’t see your Disease but someone who sees you for who your are.

    Take care x

    1. Laraine,
      Aw I’m so glad you found the blog. I hope it helps you so that its completing its purpose! Holy moly you were diagnosed early. Yes, I’m always staying busy for that exact reason and its totally ok to have a depressed stage as long as its not permanent and you work EVERYDAY to pull yourself out of it. I’m so glad you met someone! I feel the exact same, not wanting to be a burden. But the right person wont see it as a burden, I just haven’t met that person yet. It sucks and its been so hard but I’m trying to wait and be patient. Thank you so much for the sweet comment, it makes it worth it to see things like this!! Please stay in touch and keep doing well! πŸ™‚ Thank you so much.

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