Life With PH

Be Their Person.

A disease lurking in the background of any type of relationship is always heavy and a very tricky balance. Romantic especially, but do we put any thoughts into our friendships? Do we actually need to groom, re-balance and gain perspective on these type of relationships? Even though its your best friend, well, yes. Because if a disease eats away your organs and life, its likely to get to anything it wants to and it becomes your job to fight it.


Since my life has been somewhat a wreck lately, I’ve been watching fictional characters live theirs and I’m much happier. AKA, I’m hooked on Grey’s Anatomy and have finished so many seasons in one week its embarrassing. Yes, its unhealthy but we wont go there. I don’t recommend watching greys if you have a rare disease but they make very valid points sometimes. I have found myself bawling my eyes out over junk, drooling over Patrick Dempsey but I was really interested when Izzy (one of the main characters) was diagnosed with cancer. I watched as her friends had no idea how to handle her, react or what to say. She was admitted into the hospital (where they work) and kept saying that she was fine. So all her friends took those words and tended to their jobs while Izzy sat in her hospital bed, bored, alone and knitting. Eventually chemo caught up leaving her extremely sick and she ended up having to go back into surgery. If anyone knows Doctor Miranda Bailey (LOVE HER) she told the friends what a crappy job they did and tomorrow, do better.

Why am I telling you this? Because there is so much truth in it, its ridiculous. All the time we try to show everyone how strong we are with our disease. That it has our lungs and that’s it! We are fine, we are good, we don’t need anything…except we do. And that’s ok. Stop trying to play strong when you’re going to a very big appointment, surgery or maybe when its a bad breathing day. Communication gets you places and your friends have no idea what you might need or want. They are trying to do anything you say so when you reply with, “I can handle it” then that’s what they hear and move on. You have to speak up. I tell Candice all the time that I will have enough family at a surgery and that I need a friend. Luckily, she was there when the doctor told me I was in heart failure and she got to hear that breakdown, but I’m glad I didn’t have to do that by myself. If you’re the friend and not the patient? We always pretend that we’re ok, but really we are struggling. Whether that’s physically or mentally, we have demons like anybody that can catch up at anytime. You need to be actively present in their life through ANYTHING. That nine o’clock at night run to Starbucks helps in more ways than you can imagine. We’ve already lost what feels like our own body. We can’t even control it anymore and we are living day-to-day hoping we make it through alive. Don’t make us feel like we’ve lost you too. I don’t care if we say we’re fine, no one wants to be alone at the hospital. Would you? No one wants to sit at home by themselves reflecting on how empty their life is. Step in and be there. Our life is hard enough physically, and mentally is a whole other battle. Don’t forget to breathe for yourself.

What I’m trying to get out is, be their person. Thats all anybody really needs is a loving family… and their person. It’s a tough job, can you handle it?



4 thoughts on “Be Their Person.”

  1. An overwhelming ‘yes’ coming from me.
    My god, Haley. You remind me of myself but that makes sense since we share this crappy illness.

  2. Resonates with me, so lucky that I have incredible friends to support me, but one in particular who I feel I can break down to and she is not put of by it and completely gets me!! Supportive friends who do realize how hard your condition is and how serious it can be also the emotional toll it takes everyday!! I’m sorry you are having a tough time atm! Such an emotional and physical roller coaster! So glad that I found your blog its nice to be connected to people around the same age as you that are going through and experiencing similar things to you or have already gone through it and understand what you are going through!

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