AnonymousApril 27, 2018 at 2:58 amPost count: 2
Hello, I am new to the site. I’d like to have a discussion with others about having a sibling with PH. I am finding it increasingly difficult to interact with my sister, and I don’t know what to do. We have a very unusual family dynamic and I think that it affects us all more than we would like. I’m hoping to get other people’s perspectives on things. Most specifically, I am worried about my sister’s emotional health and her current living situation.
AvaParticipantApril 27, 2018 at 4:58 amPost count: 29
Welcome! I think it’s great that you care enough about your sister to investigate her disease further.
A couple of questions to help us understand your situation better. Do you know what kind of PH your sister has (ie. what caused it, or if she has any pre-existing medical conditions)? How long ago was she diagnosed? How old is she and is she still working? And do you know of what medications she takes?
I am 46 and was diagnosed 3 years ago with Idiopathic PAH (no known cause) and severe right heart failure. I was very sick at the time, but after about 6 months of treatment my heart failure improved and I regained a lot of functionality. I also did CardioPulmonary Rehab (once a week for 12 weeks, which helped).
In my experience, PH is an incredibly difficult disease to have. Emotionally, there’s coming to terms with not only your own mortality, but also new limitations. Suddenly I can’t do things that I once loved, and I’ve needed to make some pretty big changes in my life. It’s a lot to process.
It’s also difficult having a disease no one has heard of – especially when (like me) you still look fit and healthy. It feels like I’m always ‘making excuses’ not to do things, even though I know my health depends on it. For example, I rarely go out of an evening anymore – due to a combination of fatigue, and restrictions of my diet and fluid intake. So socialising is difficult. Personally, I find that I am better earlier in the day before I get too tired. By mid-afternoon my day is effectively over (I eat my main meal at midday because by evening I am far too tired to prepare a meal). So instead of having a full day to do things, as I once did (eg. waking at 6am and ‘doing stuff’ through until 8 or 9pm), I am now trying to cram everything into the period from 8am – 2pm. It’s not a lot of time, and from necessity, I now find that 90% of my time is spent on simply looking after myself (cooking, shopping for groceries, doing laundry, showering etc). I live alone, by the way.
From 2pm I’ll put on a movie or an audiobook and I’ll usually fall asleep. I’ll drift in and out of sleep and then wake around 5 or 6pm, have a snack, and get ready for bed. I’ll drift in and out of sleep again for an hour or two, before falling asleep for the rest of the night. It’s just fatigue caused by the PH, but with so much focus on mental health these days, it’s easily mistaken for depression. From experience, I can say it’s frustrating when people assume you’re depressed, when it’s really a physical problem! (That being said, depression is a common occurrence when you have a serious health condition, so seeing a counsellor is definitely recommended, especially in the early stages of diagnosis).
I think the best thing you could do for your sister is simply listen to her. Ask her what she finds difficult, either physically or mentally (it may take her a while before she can put her feelings into words). For example, I tend to get quite irrationally furious when I see fundraising for cancer or more common diseases! Try and be understanding – if she says she can’t do something, then trust her word. I tend to have good and bad days, so being able to go to lunch with friends one day doesn’t mean I can do the same the next time. I think it’s sometimes harder for friends and family than it is for us Patients, in a way. I know my limits and how they change from day to day, but I know it’s hard for others – if I’m feeling okay, I’ll get angry that they try and do everything for me (wrapping me in cotton wool!), but if I’m feeling particularly unwell, I’ll be annoyed that they’re not helping out with the little things to make my life easier! Good communication on both sides helps – they ask me what I would like them to do, and I tell them if there’s something I need help with (or want to do ‘all by myself’).
I hope you’re able to find something in all that to help you understand! The PH Association on this website used to have a pack they’d send out to newly diagnosed people which had a lot of good info for families (I gave my family some of the brochures and booklets that helped explain it). If I can find the link I’ll post it for you. Meantime, feel free to ask anything you want and we’ll do our best to answer.
AvaParticipantApril 27, 2018 at 5:07 amPost count: 29
On the PH Association website there’s a section called PH Classroom. In there you should find a heading about being Newly Diagnosed or a section called Resources. I couldn’t find the old packs they used to mail out to people, but there seemed to be quite a few video (YouTube) clips on various topics. It may help. I’ve tried to post the link below, but if it doesn’t work, you’ll have to get there the long way!
AnonymousApril 27, 2018 at 6:41 amPost count: 2
I am 34. My sister (we’ll call her A) was diagnosed around age 14 and she is now 36. Her PH was caused by a congenital heart defect. She’s had several episodes of extreme illness, the most severe was 5 years ago at thanksgiving. A was sick and dehydrated and went into organ failure. she was intubated for several days and in intensive care for over a week. She left the hospital with a veletri pump and used that for a year but now takes an oral vasodilator. I don’t know all the medicines A currently takes but I know she is on blood thinners due to Eisenmenger’s syndrome, as well as sildenafil and a diuretic. I think she also takes an anti depressant. So our family has been dealing with this for a long time. We also have another sister who is 30 (We’ll call her W). A went to college and became a teacher. She has always been determined to have a normal life so she has done a lot of things she was told she couldn’t do, like take 2 trips to Europe. She taught Spanish at several different schools over a 10 year period. Her health has been slowly deteriorating and she found it harder to keep a full time job, and even working part time was too much. A retired from teaching 2 years ago and is now on social security disability. She also receives retirement disability because she was a member of the teacher’s union and has a pension because of that. She currently lives about 30 miles away from my parents, and about 80 miles away from where I live. W lives about 50 miles from her.
So now that you have somewhat of a background, here is the problem that I am having. Ever since A was diagnosed with a life threatening condition, our family has made so many accommodations, excuses, and concessions for her, and we still do. I think that our family as a whole has coddled her since then and it arrested her emotional development. I think she is very immature and irrational, and emotionally unstable. I have struggled with anxiety and depression for most of my life and have been through enough therapy to recognize emotional problems. A little over a year ago, A met a guy who she believes is husband material. He is not. He moved in with her very soon after they met and she now devotes all her time to cooking for him and cleaning up after him. She thinks she is in love and wants to get married. The rest of our family see him as a mooch who is getting a pretty sweet deal. We think it’s only a matter of time before he quits his job and just lives off her disability income. As you can imagine, this is a very difficult thing for us to deal with.
So what I am trying to figure out is:
1. Is our family just being over protective, or is she really just too emotionally immature to realize she is being taken advantage of?
2. How much consideration do I really need to give for her feelings? Meaning, am I supposed to constantly bite my tongue and keep things that bother me to myself to spare her feelings? Her behavior at times is frankly quite embarrassing and I don’t know how to deal with it.
3. Would it be unreasonably cruel for me to tell her that I don’t want to speak to her as long as the deadbeat boyfriend is in the picture? I am having a very hard time being “supportive” of the so called relationship she is in.
Like I said, our family dynamic is very difficult to navigate. There is a lot of emotional dysfunction amongst the 5 of us. Family counseling is definitely out of the question. There is no way my parents or A would agree to that. W and I mostly look to each other for support but I think it would be good to get some outsider perspective.
And I will just throw it out there too, I would be open to a phone conversation about any of this if anyone is interested. I am trying to find some sort of support group too. I am in Madison, WI. Thanks!
AvaParticipantApril 27, 2018 at 11:24 amPost count: 29
Thanks for the background info! Please bear in mind that what I say here is only my opinion, and I’m simply speaking from my own experiences…
Firstly, I can fully understand your view that your family’s concessions to your sister have inadvertently caused problems. Full disclosure: I have a sister (4 yrs younger) that my brother (7 years younger) and I have had virtually no contact with in about 10 years (we’re polite if we happen to cross paths at my parents house, but that’s about it). In my situation, my brother and I like to say that my sister ‘enjoys being a victim’ because she seems to enjoy the sympathy and attention when she is unwell. She developed arthritis in her early 30s and in my opinion, took that as an excuse to no longer doing anything resembling ‘work’, even to the extent of ignoring doctor’s advice that could have improved her situation. She now lives quite close to my parents who spend much of their time caring for her and her three children (she’s had two failed marriages – and my relationship with her ended due to a ‘deadbeat boyfriend’ she was seeing when my nephew was 2 or 3 years old).
Personally, I think it’s okay to recognise that even though you’re siblings, you may be very different people with very different values. My brother and I are close, as we both are with my father. My mother has been the main culprit in ‘enabling’ my sister’s behaviour, and while my brother and I have respectfully expressed our opinions to her, in our family’s dysfunction, it tends to be something that is not discussed so as to avoid arguments. The incident that provoked a ‘parting of the ways’ between my sister and I occurred when I refused to attend a family gathering with my children because the deadbeat boyfriend was present – I didn’t trust this guy around my kids, and I felt more strongly about protecting them than ‘pretending’. Within a few years (even after the deadbeat boyfriend was out of the picture), my younger brother came to the same conclusion – he realised he had nothing in common with my sister (values, morals etc) and that he didn’t want to be around her.
I don’t think you should have to bite your tongue around your sister just because she has PH. I’ve only been diagnosed 3 years, and even though my illness may make me a bit self-absorbed when I’m really unwell, I know that other people have to go on living their lives and that the world isn’t there to revolve around me. I think that maybe if you took PH out of the equation (would you still dislike this guy if your sister was well?) then you’ll see that it has little to do with her illness (except, perhaps, her expectation that you will make concessions for her).
Given your sister has received an education, worked, travelled etc., it sounds to me like she has had some life experience (although acknowledge that doesn’t necessarily translate to emotional maturity). I’m inclined to think that at 36 she’s old enough to make her own mistakes (and deal with the consequences!) without needing ‘protection’. I think it’s fair to express your concerns to her, and I think it’s also fair to distance yourself from the situation if you don’t agree with what’s happening. You may be sisters but that doesn’t mean you need to be best friends! (As I said, in my situation, we’re all polite when we meet for my parents’ sake, but I honestly wouldn’t care if I never spoke to her again). Presumably you and your other sister have your own lives and interests and problems – I don’t think you need to shoulder your sister’s burdens too. I’m guessing that if you’ve dealt with anxiety and depression over the years you’ve learnt that it’s okay to cut the ‘dead weight’ from your life, to distance yourself from the things or people that are dragging you down.
Without meaning to be flippant, you should also remember that ‘love’ makes people do stupid things! Maybe your sister will marry this guy, maybe he will mooch off her, maybe it will all end in disaster – but that only has to be your problem if you allow it to be! I come from a big, extended family where ‘family duty’ should probably be tattooed on our foreheads at birth – but even so, everyone seems to have accepted that I’ve broken ‘the code’ by drawing a line with my sister. It did take some time, but it was well worth it for my own peace of mind.
It sounds like your other sister (W) is supportive and perhaps holds similar views to you, so it sounds like you have some support. I live in Australia, so a phone call would be a bit difficult, but hopefully you could also speak to a counsellor about your thoughts. At the end of the day, I may have PH, but I’m still just a ‘normal’ person – having this disease doesn’t suddenly give me super-privileges in all my relationships. So I don’t think that you should treat your sister A any differently than you do your sister W, if that makes sense!
I hope that helps somewhat (sorry for the long long post!) and I wish you luck. Let us know how it goes and perhaps some of the others can add their thoughts.
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