Dropping the bomb to others (and myself) on having terminal PH

[vanessa-vaile]

Years back a friends with a neurological condition that seriously limited her without without her looking it, taught me a lot about pacing myself, treating myself well and especially what to do about just this sort of reaction. Her in-laws were particularly difficult. It took years for them to really get it.

Take care of yourself. Remember that such comments say more about the speakers than they do you or your PH. Keep trying to educate them but also give yourself permission to ignore them. My academic background, but I’d favor homework — reading assignments.

[v-r-peterson]

I hope nobody minds, but I’d like to explain it from another perspective. Whether you’re the one going through it or you’re one who’s close to the patient, you’re going to deal with the five stages of grief. Four years ago, I could clearly see that my son wasn’t well, but when he finally got the diagnosis, I went through the first stage — disbelief. Thankfully, I never expressed that disbelief out loud, so I don’t think it hurt my son. It wasn’t until I was able to visit him in the hospital, and the doctor who wrote an “excuse note” for my job wrote that it wasn’t known if/when my son would leave the hospital alive. That woke me up real fast. I don’t know if your family members are dealing with the first stage of grief or if they’re just ignoring the obvious. I second the suggestion to have your family members go to your appointments. It may be the only thing that will wake them up. I’m sorry you’re having to deal with this serious illness, along with people who don’t take you seriously. That’s got to make it so much harder to deal with.

[brittany-foster]

Thank you so much from this perspective!
I know first hand how denial can be strong for family members too, not just the patient facing the condition. it took me awhile to accept what I have and the cards I have been dealt so I can only imagine how difficult it is for family members. I’m so sorry about how the doctors note was written but I’m glad that it helped you to accept what was going on even if it was extremely hard to do that and see that. Acceptance is so important and that’s how I was able to better advocate for myself and educate others once I accepted this is what I had. Then I made that my mission. Thank you for sharing from this other perspective though, that is so helpful !

[azebraman]

Hi Vanessa,

Thank you very much for your kind and helpful words!

I do understand that the problem isn’t with my disease, it’s with those around me. That means I might have to find entirely new friends (and/or family, though that one’s a lot more difficult!).

[v-r-peterson]

Thank you. I should have also mentioned that two years after his Pulmonary Hypertension diagnosis, they discovered it was CTEPH, the only type that can be cured with surgery. Because many of his clots were distal (in the artery ends where they couldn’t get to them), surgery wasn’t a total cure for him. Thankfully, it did help significally. They didn’t expect him to see his 30th birthday, which he hit this year. Now, even though he’s doing better (though still on some meds), I keep worrying about those distal clots that are still there and how they’re going to affect him later on. I keep those thoughts to myself, because I don’t want to worry him any more than he already is.

[kathleen-sheffer]

I’m so glad your son is living into his 30’s. I appreciate your perspective on denial. In my family, we use the denial as a tool. Being fully aware of the reality of my situation doesn’t help us function day-to-day. We do what we can, what needs to be done, but then we try not to dwell on my prognosis so we can enjoy today. As long as your son is staying on top of check-ups and any medication he’s on, you can let your worries go and tackle the challenges as they come.

[brittany-foster]

I also find a lot of hope with stories that prove the doctors wrong ! I’m glad that he is celebrating his 30th. Is he interested in joining the forums too? I am 27 so close to his age ! I can’t even imagine all the worries that parents have that they don’t say out loud. My mom always asks me for oxygen readings and pictures of the readings during the day when she knows I’m not feeling well. The care and support you have for him is powerful and I know he feels that.

[v-r-peterson]

I’ve tried to convince my son to join support groups. So has his wife. He says he’s too busy. If he ever changes his mind, I’ll point him this way.

[brittany-foster]

Definitely ! Especially because there are others around his age on here with it too! Even his wife is more than welcome to join too.

[v-r-peterson]

Thank you. I’ll let his wife know about the forum.

[brittany-foster]

It was very difficult at first for people to accept that I just wasn’t the same. I found myself hiding it myself which just made things worse because they couldn’t physically “see” how sick I was on the outside. I had to get more comfortable around my larger family to even wear my oxygen in front of them. I think what really made my immediate family realize how serious everything was and also what helped my boyfriend to sort through a lot of this is going to appointments with me. I would suggest that if you have a close friend that is having a hard time accepting this as part of your life, ask them to go with you to an appointment. It gives them more clarity. I would do this for the people in your life who you do not want to lose. I learned that maybe it’s not a matter of them being ignorant or rude, it could just be that they are putting blinders up and don’t want to accept or hear the truth.

[jen-cueva]

Hi VK,
Living with PH since 2005, I STILL have family and so called friends that continue to be in denial. It’s tough , especially that I usually only go out or see most with makeup on and “fixed up “. They often think if I’m NOT in the hospital, I’m fine. It’s a constant battle that I refuse to try and fight as I prefer to save my energy for fun things and appts, lol

It’s definitely most important that we take care of ourselves and try not to stress over this, it’s not an easy task, but it will drive you nuts if you focus on this. Hopefully you have at least one supptive person , if not, the PH community is a great support.

[kathleen-sheffer]

Well said, Jen and Brittany. I’ve always treated this problem as a filtering method to help me find good friends and partners who take my health seriously, support me through challenges, and celebrate my triumphs. That doesn’t make it any less painful, and I am blessed with parents who are with me through it all.

[brittany-foster]

So true Jen,
it is hard to get caught up with thinking about who we have to “convince” of how serious things are. Some people just unfortunately do not want to face the reality of it. If I could choose to turn a blind eye to what is going on with my own body I would much rather ignore it too. Unfortunately, we don’t get that choice because if we ignored how we felt every day we wouldn’t be here to talk about it. As you said, Jen, as long as you have the support of a few people and this community, that is important !

[ronald-cole]

Hello, Ron Here,
Amazingly what a similar problem we face. People look at me as if I am a shirker or lazy bum. First, I am retired from my own company after 40+ years of really working hard. Lazy, If I felt better I would do so many things. Personally, I am ashamed for people who look at us and judge us. I tell no one about my PH, I do not want to deal with the utter bullshit on a daily basis. I thought about it and decided this is the way to go. The home health workers, My Priest and a few!!!! select people know, other than that, the hell with them.
We are so weak, so mentally exhausted from our fears, lack of energy and many other things, we do not need to be judged by anyone. Personally, I am taking a firm stand on that. If you have anyone!!!!!!!!!!!!!!! giving you a hard time, just straighten them out, remember folks my brothers and sisters, we are fighting for our lives, and every day counts. The young beautiful girl that was pictured that just lost her life, brought tears to my eyes, such a beautiful girl, and the photo was so cute and she is dead. Remember, we have rights, the right to tell people to jump in the lake, or just ” Leave me alone. I love you all. Ron Cole

[brittany-foster]

Thanks for the words Ron. Having something like death happen in this community especially to someone so young opens up your eyes to who is important in life and who is going to be there for you through all of this. I am glad that you have people in your life who you trust enough and can open up to about what is going on with you. I know the fears and exhaustion all too well. Life is way too short to worry about how others will perceive us. of course, not worrying about it is much easier said than done especially if we have such close friends that or even family members that are stuck in denial or are unwilling to accept what is going on. Thanks for all your input ! Glad to have your support here and have the voice of reason.

[azebraman]

Hi all, especially moderators!

It’s very heartwarming to have gotten all the replies (and even a courtesy stock image!) to my post.

My biggest hurdle right now is actually my parents. I can choose to get rid of ‘friends’ but doing the same with parents is tough, although I have considered doing it. I don’t think they understand the concept of terminal illness all that well and conveniently deny it because they think it’ll make them look bad. They’re also of the opinion that they deserve a daughter-in-law and grandkids from me. Yeah Right (TM).

@texas2018 Ron: I’m so sorry that people still dare treat you like such crap. Your body’s gone through ravages of both 40+ years of working and PH illness and I wish people would be more respectful of you.

[v-r-peterson]

VK, that’s one of the reasons we didn’t tell my mother about my son… she’s of the opinion that any serious illness is because the ill person must’ve done something to deserve it and is being punished. Poppycock! She figured out that he wasn’t at work for several months because he’s a butcher at the local grocery store. Luckily, she thought it was because he had been fired. Then, when she saw he was back at work, she changed her mind and decided he was rich enough to take an extended vacation. That really impressed her. <sigh>

I guess my point is, try not to let the attitude of judgmental people affect you, even if they’re your parents. For reasons that have nothing to do with my son, I had to stop calling my mother quite some time ago. I’ll talk to her when she calls me, but even then the conversation is on my terms. She loves to gossip, and I refuse to discuss anything gossipy. It took me years to get to this point (and lots of pulled hair).

[brittany-foster]

V.R.,
I’m sorry you had to go through all of that too. It takes a lot of self control to not fully lay into people the way they probably deserve ! But it’s true that in the end it’s just a waste of time. A lot of older people tend to think that things can be changed with a better attitude and some positive thinking. Unfortunately, that’s not how chronic and serious illnesses work. Even thinking about my own grandparents, a lot of things that are negative and hard to handle are just kind of shoved under the rug or not talked about. My nana has come a long way with accepting things and wanting to learn more about my conditions though. It helps when I ask her to come to appointments with me and especially when she was at my last surgery really seeing firsthand what I go through.

[ronald-cole]

Brittney, The true voice of reason here, helping all of us with PH, a solid foundation of reason and direction. The newcomers to PH the Malady need to begin reading all of Brittney’s comments, she truly is a beautiful, young woman who ‘GET’S IT”. Personally, I think my suffering is not as bad as what I read, or perhaps I just ” deal with it”. just another reversal. Whenever I feel sorry for myself, I am at the Hospital and see those people just Rolling in and I realize that we are the lucky ones, we are the most fortunate because of thinking about it. We have time to die!!! we can make amends, we can get right with our God, we can tell the jerks that have harmed us to put it where the sun does not shine. I prefer this to getting hit by a bus on the way to work. It has been a time for me to get my life right, and get my value system in order and a time to devote to meaningful things. I try not to sit around contemplating my navel. I fight this, I live alone, in a new area, now making friends. I moved from California to South Carolina, Charleston, and retired in a beautiful Home on the Ocean, furnished it and as a veteran had a cute service Dog named Oreo>In one swop I lost EVERYTHING INCLUDING OREO in Hurricane Irma. I evacuated and ended up in a cottage in Texas by a stream. People here are great and I am 20 minutes from UT TEXAS Med Ctr. specialist clinic for PH. God loves us and I love you all.

[brittany-foster]

Ron,
Thank you so much for the reply and thank you for the shout out to my columns! Hearing positive feedback truly encourages me so much and can turn any day around for me! You’re right, in this life we must do what makes us happy and live it to the fullest. I’ve spent a lot of time worrying about future plans and have always come to the same conclusion that there is no way I will be able to fully “plan” for much. I shift my focus to the day and find that life is way more enjoyable that way! 🙂

[brittany-foster]

VK,
I’m glad you are getting some good feedback from your post. It makes me so happy when we are all able to have such great conversations on here with those who truly get it. You’re right. It’s not easy to just cut friends out unfortunately, but it seems nearly impossible to do that to family members especially the ones that may just be in denial! I’m sorry your family thinks that way. Not having their support must suck (for lack of a better word!)

[azebraman]

Thank you all especially Ron and Brittany for your continued support!

(Ronald Cole) we can tell the jerks that have harmed us to put it where the sun does not shine. I prefer this to getting hit by a bus on the way to work

I completely agree. I’m fluent in insulting people (in at least 3 languages at that) but with my family for obvious reasons it’s touchy. Maybe I’ll just tell them to take their opinion to Portland in the winter (where the sun doesn’t shine, either).

(Brittany Foster) Not having their support must suck (for lack of a better word!)

It’s tempting to tell them to stop sucking so I can breathe. 😀

[brittany-foster]

I’m sorry you have to deal with family drama related to your health ! Family drama in itself can be either entertaining or draining but when it comes to drama around health reasons it is wayyyyy more draining especially if you let it get to you. Hope they can come around, and if they don’t just take their opinions lightly ! Focus on the GOOD support from people ! 🙂

[robin-frankel]

It’s good to hear others perspectives on this illness. I find it hard to be the “bad news bear” and so unless loved ones ask, I don’t tell. I hate depressing my husband. My daughters have stopped calling because it upsets them I’m sick. My one daughter I would speak to three times a day, now it’s a text from her with a picture of her cat or what she cooked that day. She carefully avoids the subject. My other daughter just doesnt call or ask. My son is with me so he is always upset, I can’t avoid showering him symptoms. One of my friends says she couldn’t handle it and can’t ask how I’m doing. I put on a good face but can’t do the things I used to with friends and hate having them see symptoms, it bums them out. I will need a heart lung or double lung transplant so I guess this is the good part for them!

[brittany-foster]

Robin,
I know it is tough when people, especially family members seem to be distancing themselves because the reality of the illness can be too much to take. It leaves those we love with a lot of fear, unanswered questions, and a lot of anxiety (the same way it leaves us feeling all those things too). It can be hard for family to articulate what their worries are. Have you tried to open up the communication with them and have an honest conversation with them about your own fears and concerns? Maybe it will help them open up about things they may be having a hard time with. This doesn’t mean that they don’t care about you and love you, some people, my close friends and family included do have a hard time processing it all and it can be very overwhelming for them to figure out what we can and can’t do.

[azebraman]

@rocko-robin – Hi Robin,

I am shocked that your kids cannot at least be your friend(s) and listen when you talk. If that’s all they could do then that would be enough. Their mother is sick and at least they can give condolences. It’s not like your daughters have to pay for your treatment or take care of you 24/7.

Maybe they’re not ill themselves so they just don’t get it (my parents have the same problem, they do not know what chronic terminal illness feels like). Honesty would be a good policy if they listen.

[kaye-norlin]

I am late to this topic but I want to add a little something. I didn’t tell people I was terminal- the doctor barely told me, calling it “late stage heart failure” from the PH. I cried every now and then, only when no one was watching since my daughter was terrified and my husband was in denial the whole time. I did what I needed to do and got by; then I got my transplant.
There is something to be said for living up to other people’s expectations; I think that is maybe why I did so well for a long time. My doctors weren’t sure how I managed to walk into their office before I was even diagnosed. My PH was so severe then and my right heart was so huge- ginormous. I worked with restrictions, O2, and a pump for a while until I retired at my full retirement. I did what I could and didn’t apologize for not being able to do things.
I am so sorry that many of you have lost so much and I am so sorry that many people have dysfunctional support systems. I think some people are in such deep denial that they turn away from any conversation; that was true for me when I had cancer years ago and THAT was visible! It is certainly true for PH patients when we don’t look sick. I was actually a little glad I had the O2 tank for 18 months; at least then people knew there was something wrong with me.

[kathleen-sheffer]

Thank you for adding to this, Kaye. I like your spin on denial – that it helped you do what you had to do rather than live up to the expectation of someone with a terminal disease. It has always helped me to have a hopeful mindset and to focus on what I have and can do.

[brittany-foster]

Hi Kaye,
Thank you for sharing all of this. It definitely is hard for people when their support system isn’t there and when their family or support is rude about it. It’s one thing to be ignorant of all we go through in a day (which is easier to be when an illness is invisible) . Sometimes I take my oxygen off and the biggest misconception is that I’m “better ” according to some people in my family or that I’m “doing well”. I have to say to them “I’m doing the same as when I has the oxygen on a few minutes ago”. I don’t take this as rudeness though on their part. If they have never had a chronic illness they really don’t know the half of it.

I’m glad you were able to push yourself and still kept your fight in you. My drive to push myself is what keeps me going (even if sometimes that same drive makes me feel extra tired). It’s worth it on the days when I am feeling like doing more!