That is really rubbish, but as you say they probably don't know how to deal with it and so have withdrawn. I always think the best thing to do in a situation like that is to write to them about how you're feeling and ask them to write back. So much can me misunderstood in conversations, especially when emotions are running high. However, it really depends on your family and whether or not they would write if you asked them to.

People do act weird tho in this situ - I had a really good friend - the first friend I contacted from the ER in USA to tell her what had happened - long story short - we no longer speak - she went into one about how worried she was about me when I was in NYC and that I never texted her enough from there - it was very mixed up. We had a long email fight, but I realised I needed a break from her issues as I needed to concentrate on my recovery and I am glad I did, as I have not heard from her since. There have been some older posts on this subject of family and friends reactions so check those out too.

Hope it gets better for you. And yes, you're totally right - they should have been in touch with you and you have every right to be peed off at them, but make sure you put your recovery first before you do anything.

Take Care
Dawn x x

For me, it was the other way around. I was the one who kind of withdrew. I just didn't want a lot of people around me or asking me the same 50 questions over and over again. I know I sound ungrateful, but I can't lie. It totally annoyed me!

But I think for our friends and families, I think that they assume that once your stable in the hospital or once you're out of the hospital, that you're fine. They don't realize all the stuff that comes with recovery. So, you have to tell them what you need.

My family's response at the time was to pretend like it was no big deal, at all. I was really freaked out when I was in the hospital and was told that it was a PE because that's what killed my mother's father - I expected her to be quite upset.

I think now that I'm recognizing that they held it together for me and were upset, but didn't want me to see it. Occasionally they would slip up, like my sister spending almost every minute in the hospital with me or my brother saying, "You know you're in a cardiac care unit, right?? That's not good!"

The fact that they're not visiting you, esp. around the holidays, is rubbish as Dawn says (I would use a harsher word, personally). But, I agree that they probably don't know how to deal with it. Have you asked them to come visit you? Have you told them that you're upset about it? You really, really should not have to be the one to reach out, but maybe if you do they'll respond well?

My mother was wonderful right after I had the PE. She had one about 11 yrs. ago and is still on warfarin so completely understood my feelings, fears, etc. She is/was a great source of comfort and understanding for me. One of my sisters, however, was a bit strange about it all. She is a nurse and would call me to see how I was doing, but seemed bothered when I would actually tell her. I honestly think that it all scares her...she is scared for me and for herself....if it does in fact run in the family, maybe it will happen to her. She started taking an aspirin a day right after it happened. Most friends and family have been terrific and supportive. I do think that people are suprised when you are not immediately recovered or over it all, but I think that that is just part of the overall ignorance regarding PEs and DVTs. I think for a lot of people...they are just scared or don't understand the condition.

It's complete rubbish that your family hasn't come to see you. I saw each one of my immediate (and not-so-immediate) family members within about a week of my release from the hospital - my mom and my aunt flew across country (New York to San Francisco) just to be with me for 3 days. Then came my stepmom and one of my sisters. Then my other sister. By the end of June I was so exhausted from visitors I was ready to be alone for a month!! But ... I think a big reason for all of this was that my dad died of a PE 8 years ago (almost to to the day of my PE). My family knows what it can mean.

That being said ... I had a few friends who really just ... ignored it. My neighbor, who kept telling people I'd had a heart attack (?!), and when I would try to explain to him what it was he would flat out say he couldn't talk about it because he had a problem with death (uh, don't we all?!? lol!) because of his dad's death ... who coincidentally died of a heart attack. And I had another close (I thought) friend who never asked me how I was, never came to visit me and to this day (6 months later) still never asks me about the PE. And one of the reasons we had become close is because we had sort of "bonded" over the fact that our dads both died very suddenly and without warning, right around the same time. So it just goes to show you ... sometimes the people who you'd expect to understand you the most ... uderstand you the least. It's confusing and it's difficult, but you can get through it. I don't mean to sound so harsh towards your family, but just realize that the shortfall is theirs, NOT yours.

All you can do with your fam is to let your feelings be known, and just feel good about yourself that you've done that. Don't expect miracles and look for the baby steps they're trying to make. All the while ... seek out those who ARE offering up their support and sympathy ... you may find it in the most unexpected places!

Take care - try to keep your head up. *Big hugs*

I'm sorry to hear about your family reacting this way. I have a sister that I doubt I wll ever speak to again, in large part because of how she treated me after my DVT/PE. She was in a unique position to help me, as she had had a DVT, and she wasn't there for me at all. When she did decide to call, it wasn't a good time for me, but since it was a good time for her, she wanted to talk then. I was upset and told her so. Her response? "I can't just drop *everything* to be there for you." Uh, no, I don't think that's what I was asking, but since you brought that up, when exactly would you consider to be a good time to drop everything? When I'm six feet underground, or not even then?

After that conversation (where she hung up on me), I *never* heard from her, except for my birthday and maybe two e-mails in response to something I sent about genetic testing, during that whole first year after my DVT/PE. In retrospect, it was a one-sided relationship for a long time, with me doing all the keeping in touch. But I still truly thought she cared about more than just herself, and I always thought she would be there if I needed her. Now I'm the pariah with most of the rest of my family because I don't want to see her or talk with her. "That's just the way she is," they say. Well, this is the way I am now, after my PE, and sometimes it isn't pretty.

I also had a friend that I thought was a good friend who disappeared after my PE. I think it had less to do with her fear of death or not knowing what to say than with the fact I wasn't "useful" to her anymore. But other people were there for me, and as has been said, sometimes the people you wouldn't think would be there for you are.

I know that if you say "blood clots" to most people, their eyes go blank, because what's the big deal? Everyone can relate to what they think clotting is - don't we all clot after we cut ourselves? But if you say it to a doctor, their eyes get big, and they usually always say, "You know, you are very lucky to be alive." So I guess if you have doctor friends, maybe they will be there for you! :-)

Take care, beecute, and know you aren't alone with this.

Hey there beecute,

I'm so sorry to hear this. I can relate to this one, as this is the thing that I found the hardest about the whole experience. I lost a lot of friends during my recovery as they were just too scared to talk about it. I think that it was just easier for them to say nothing - so that's what they did.

As for the people who did stick around, the subject was a complete taboo - it was like having a pink elephant in the room - everyone knew it was there but you weren't allowed to talk about it. People would assume that I didn't want to talk about it, so they just kept changing the subject all the time!!

That's the main reason I joined this support group - as I knew that the people here would want to talk about it. I found this so hard and upsetting. Part of me didn't know if they were just trying to be strong, or were just scared. A lot of my friends didn't understand it and couldnt see why i wasn't up and about sooner than I was.

All I can do is say that we're all here to get through this with you and to talk to you about anything that the people close to you are too afraid to talk about.

That's the biggest lesson I learnt in all this - from now on if any of my friends or family seem like they're having a hard time, instead of not saying anything I make it my business to try and talk to them about it.

How is your recovery going? Your PE was really recent wasn't it? Mine was about a year ago now. Sorry this is a massive post, but like i say this was the most difficult thing for me, and I really hope you manage to talk things through with your family and friends. You need to tell them exactly how you feel.

I wish you a speedy recovery and am here if you ever need to chat.

The love and support here has literally brought tears to my eyes!
Y'all are so great. Thank you! I am so glad I found this community. Thank you for making me feel welcome here.

Shyla100, I just got out of the hospital a week and a half ago, so it is all very fresh and raw. This is my second PE. I am so upset because this means that I'll be on Coumadin "for life." It also means that I am facing the fact that my body likes to clot and we can't just blame the Yasmin that I was on with the first clot. In addition to the physical recovery, I am dealing with a lot of emotional stuff.

DawnUK, Thank you for calling it "rubbish" and thank you Nemtynkht for saying you would even use a stronger word. That made me laugh a bit. I needed that.

I am so sorry for all of you who had conflict with or lost relationships with friends or family members over your PEs (e.g., SusanPE; hooper69). It is so sad. Thanks for sharing your stories. Keep them coming. It is good to be able to share stories with people who understand.

I called my mother last night and let her know what was going on. I even said "I may be all grown up, but I still need my Mommy when I'm really sick." She made a million excuses. She thought I needed to rest and wanted to leave me alone. She was too tired from work. She was too busy Christmas shopping. In the end, she finally apologized.

She also said that she thought that if they released me from the hospital, I must be fine!

rmb, you mentioned this and how people get confused.

I told her that she knows that's not how hospitals and insurance work. I explained (again) that I was giving myself Lovenox injections twice a day . My doc told me that before Lovenox was invented (only about 10 years ago- someone correct me if I am wrong), I would still be in the hospital. She got really quiet after that.

I still need to talk my brother and sister-in-law before I see them on Christmas day. Otherwise, I will have a hard time being nice, I am afraid. My brother never even called me.

I am trying to focus on those who are supportive, as khurney1 mentioned. I have some great friends. Two of my best friends spent a good amount of time with me in the hospital when my family wasn't there. Other friends who live far away have called multiple times to check in on me.

I am also grateful for my new friends here!

ugh, I meant to write on this post earlier...but avoided doing so as my family havnt been there for me at all.

My family were by my bedside in the hospital when they thought i was dying, but as soon as they found out id be ok, it was like "oh ok...lets go back to ignoring Ashley" So my mom doesnt even ask me how i am even though im staying with her right now.... my dad barely calls...and they mostly just bug me about when ill be back to work full time again, i have really nobody to cry to, nobody who understands except my ds friends...nobody wants to take the time and energy to really imagine what this is like, my family was never normal, ive had a really messed up life...but i thought somehow it would be like in movies, like magically me and my mom would have a normal relationship, or people would call and say "hey how are u feeling...." nope, its just "omg are you crying again...when are u gunna get over this... oh you just dont want to help around the house and your making up that your muscles are totally atrophied and u need to build them back... " but then my mom will say stop caring so much about those people on the internet.... I cried to her today about lori's reoccurrence, and i was pretty much told that we cant cry over spilt milk, and that it wouldnt happen to me... ugh so I care sooo much for all of u bc u have all been my family through this. truly you have... sad as it may seem you guys have pretty much been my sole support..... my girlfriend really tries but she gets frustrated with my anxiety and we fight a lot over it, but she has not given up on me like my family....but thank god i have ds. I so avoided this post even tho i have a lot to say, bc it makes me sad to admit that i really cant say i have any family i can truly lean on, but my gf and she gets frustrated really fast after 6 months of this crap.

ugh.....
xoxo. your not alone beecute.

i sort of know what you mean. although i cant believe they arent even visiting you in the hospital!! my parents tell everyone everything is ok but it really is not. i am very sorry and you are in my thoughts girly!

This community is a life saver. All your wonderful insight and responses help all of us in so many ways. This one for me is a very intertwined subject. I am 66 years old so having a PE is not like a lot of you younger people. However, I have always felt that because I am in great shape by all the exercise I do for the last 30 years that this happening to me was just such a shock to me. Silly thinking I suppose. We lost our son 11 years ago in an auto accident and that changed our lives forever. Talking about people (friends, family) staying clear of you. That is when you find out a lot about people. Friends and family just could not deal with what you had become. After all, you were not the same happy go lucky person you had appeared to be. It took years for me to forgive myself and them for the reaction they had. A wonderful group called Compassionate Friends was mainly out best source of help. Don't get me wrong. There were some folks you didn't expect to be there would call often and that was wonderful. I will never forget who was there. So it is the same for a illness, they are scared it is a communicable disease and back off. Just focus on your recovery and the fact you are still standing tall. Happy holidays to you all. You are all so helpful to me on so many levels.

Beecute, I understand your family reaction. I am new to this support group and very happy to have found it, btw. Anyway, my family is generally pretty normal and VERY healthy. So my diagnosis has thrown everyone. I am 42 and my sister is in her early 50s. Neither of us, up until now, have had a serious illness. She is reacting very strangly. At the family xmas eve dinner she told me to stop being a baby and quit going to "all those doctor appointments, they are just taking advantage of you." At that point I realized she really doesn't get it. I would like to think that she might also be a bit afraid that this could happen to her. Food has been an issue at family gatherings. Everyone is pretty unsympathetic to my different dietary restrictions, my mom is insulted when I won't eat her traditional family meals. I've read through most of the thread and everyone seems to be on the same page. This is a scary thing to deal with, but because we don't look "damaged" in any way, people find it hard to believe we are really sick. Sorry no one visited you in the hospital, that is a real bummer, time slows down in the hospital. Hope things smooth out for you, Catherine

My families response was PANIC, I guess they couldn't face the fact that Mom was mortal, what I hate is how different they all treat me now. I'm not an invalid and i don't need assistance with everything I do and I can still have my life. I am a trained professional and know how to do things correctly and safely so know what precautions to take when I go to work, or go play.
I am a wilderness search and rescue dog handler and first responder, I have made the decision to wear a helmet when I go on searches along with my PPE's to protect my skin or in case I fall in steep terrain or am in thick brush. I carry a first aid kit, VHF and UHF radios and a loaded weapon to protect myself and my dog from animals that think were lower on the food chain. My husband and kids want me to live in this nice neat little bubble where I won't get hurt, He even suggested I quit doing search and rescue, selling my horses, ATV and snowmobile, and even stop hunting. I have talked to my doctors and they have all said I am doing the right thing by continuing my life but just taking the needed precautions to keep myself safe. My pulmonologist did suggest a home INR meter so when I'm in the back country I can do my own checks, and I am seriously considering this. I guess to make a long story short I don't think God would want me to stop doing what I do to help others, he gave me this condition so maybe I can learn a little more compassion and patience.
By the way I'm a coumadin lifer now.

Catherine's response reminded me of a very, very odd response my family has had recently.

I think my sister is jealous of my condition.

She got tested for Factor V Leiden immediately after I found out I had it. Now, she has NO history of clotting, has never taken birth control, is not overweight - in other words, is not at risk for clotting. But she asked the doctor if she could be put on coumadin as a preventative measure.

A few weeks later, she tore a muscle during a marathon. Even though she immediately recognized that she'd had the same injury before, in the same leg, with the same exact onset, she told the doctors that she was at high risk for clotting and suspected a clot in her leg. I kind of think she's pervertedly jealous of my situation.

I think that although they hear how dangerous a PE can be they really do not understand the high mortality rate of a PE.
It may be fear of facing a ill child but I think in general they think once u are in the hospital all will be fine and so usual life goes on.