Hey Jean, that's so lovely that your partner now sort of gets it. I haven't shown anything on the site to my spouse, but he knows I'm a member and knows that it has helped me, and I've verbally shared things with him from this site, particularly about the anxiety I first experienced it. Because he didn't understand it. How could he? I didn't even understand it- until I saw people experienced the same thing.

I will say this. Our spouses and partners suffer through this experience too. It's just a different kind of suffering, for different reasons. When I had my PE almost 4 years ago, I had collapsed on the street about three houses away from my house. I managed to make it home and then collapsed again in our living room right in front of my husband. I can't imagine what that had been like for him. So once the ambulance came, I was taken to the ER, and finally stable in the ICU that morning. My husband was with me that entire time, and finally felt comfortable enough to drive to my brother's house to tell my brother what had happened. I never understood why he just didn't call my brother. I happened to be with my brother a couple of weeks ago and we were talking about that day, for some reason, and he said, you know when Chris came here, he was crying and so upset. I never knew that my husband was crying. He's not a crier for one thing, and while I knew he was concerned, I had no idea seeing that and being with me and hearing the doctors say how lucky I was would affect him so much, that he needed more than to tell someone on the floor, that he physically needed to be with someone at that moment to help him through the emotions of it.

So, everyone in your life is going through it, even if it just seems like you are. I think it's important for us to remember that when we feel like no one understands. No one really understands what our loved ones are going through either.

What RMB said is true, we never really do know what everyone else is going through. How could we? They don't know what we're going through and vice versa.

My husband knows I'm on here all the time and sometimes he reads over my shoulders, but he's never really sat down and read through things. He respects my privacy on this stuff, which is nice. I do sometimes show him posts that relate to stuff we've been going through, but that is about it.

If reading this helps, then I'm all for letting the SO see it. If he/she wants you to have your privacy, that's worth noting too. Whatever helps us all understand each other, I'm for it.

I have read the majority of the posts with my husband. He had a difficult time understanding why I couldn't function like I used to 21 months ago before my PE. He now knows that what I am feeling everyday is shared by other survivors. so when I tell him I'm having a bad day, he runs interference for me. We have become closer and most of his fear has eased. We talk about new postings and he urges me to participate every chance I get.

I never have shared it. I don't really know why. I have tried to talk to them about it but they don't understand even though they do try. I am going through a rough patch of sadness and depression again and I now try to hide it from them. Don't know which is better hiding or telling. I am trying to get in to see my dr. Sometimes I get so frustrated because I feel like I am moving backwards.

Maybe if I did show them they could relate in some way. I will think about it. Thanks for this post.

Jean- you are lucky that you have a caring, interested partner who takes your illness seriously. I have seen lots of stories similar to mine below, unfortunately.

I have to say that I have found that most people just don't believe we are sick, because we don't look sick. To this day my entire family thinks that my PE's were a huge over-dramatization, a "much ado about nothing," despite the fact that I spent 3 days in the ICU, 5 days in the hospital total, and my sister heard the ER doc say, "how the hell you're not dead is a miracle." The only family member who came to visit me was my sister-in-law, probably because she took care of her dad as he was dying of cancer for 1.5 years.

My former PCP (he just retired) who is also a friend, was over for a BBQ on Labor Day, and he started to ask about my PE's and about how I was feeling. My brother actually said, "Big deal, it's over, you're fine. It's not like you have breast cancer or something." When I told him that more people die each year of DVT/PE than breast cancer he said, "yeah, right." When "Dr. John" tried to explain to him the severity of the event, my brother just got up and left the table.

Of course my bro is an extreme case, but I find most people just have milder versions of this mindset. Rather than condemn these people, I prefer just to think that they are care-less because they are clueless. Heck, most of us have had to educate our own doctors at one point or another. I'd have a better chance of getting my family/friends to clean my house than read these posts!!!

Hang on to your partner; she's a keeper!

Well, like anything, if you've not gone through it or experienced you really can't know, although some people are born without a sensitivity chip it seems.

I have ulcerative colitis but I don't look sick. Even when my disease is not in remission, I will most likely look normal. Most people with chronic illness look fine. So, there are so many people walking around out there who suffer from something daily, and we have no clue. And I bet we aren't always very sympathetic or empathetic to them either. My husband has type one diabetes and when his glucose totally bottoms out, he acts like he's either higher than a kite or intoxicated. I've had people yell and call him names in public because lets face it, he's actin' a fool. But they have no idea that he's sick.

At the end of the day, all you can do is worry about yourself and forget about trying to make people understand. It's often an exercise in futility and wasted energy. You know the truth, you know what happened and you know what if feels like. Sometimes, that has to be enough.

Yep, I have to agree with this. I work in a bank and folks tell you all sorts of stuff when you're discussing their finances. There are a few people that *DO* look sick but others who look completely normal even when you can tell their account is bottoming out with bills to doctors and hospitals and pharmacies.

And sometimes the family is suffering too. We had one guy who was caring for his dying wife who looked more and more haggard as the days went by. You get to know folks and everyone has something going on ... not knowing what it is doesn't mean you should assume that their life is all peaches and cream.

For sure Toss. I think about that all the time. This is such a good topic.

It's like, does having a PE wake you up to other people's situations. Maybe for a bit but I do believe our worlds are so so small. I think, I've been so arrogant over the years thinking I knew what people were all about. But you never really do. Having a PE and having a chronic health issue makes me all too aware that most people don't know shit about anything. And I include myself in that.

Everyone's got a story, everyone has a pain, whether it's emotional, spiritual or physical. The world is full of people who are screaming to be heard and understood and even we who should know what that's like given our PE experiences, probably turn our backs or avert our eyes most days. And if you deny that, you're not paying attention.

My husband thinks this website is just a bunch of crazies focusing on their illness. He has never read a post but just knows that is it not healthy. He told me that I was absolutely mental during my illness. And yes, everyone thinks you are fine because you look normal. I think that is why we keep it to ourselves.

I guess the problem is that everyone thinks that everyone is fine, because you can't see the pain -- emotional, spiritual, or physical -- just by looking at each other. And we tend to hide it, because we feel that people won't understand. But I have had some of my best moments with people I don't know in brief seconds, where we've both understood that the other hurts and that we know what that feels like.

A quote out of my quote book that I found years ago:

"Be kind. Every person you meet is fighting a different problem."

Wish I had someone to attribute that too ... but it is true, even without knowing who said it.

You know what both saddens and frustrates me? It is not that someone may not understand, as we have all pretty much stated here, unless you go through it how can you possibly understand. However, a lack of understanding does not and should not equate to a lack of compassion!!!
Whenever I find myself quick tp judge a situation/person, I almost immediately step back and say wait a minute, I have no idea what is going on with them!
I have one sister who completely gets why I have anxiety. Another sister wants me to just "snap out of it". Her I just ignore. LOL

The more I think about this, the more I feel the need to add my two cents! :o) Yes, again!

I cannot imagine what must have been going through my (at the time) 11 yr old sons mind as he was with me (the only one) the day of my PE. What it was like for him to be at the ER (then with family) and hear much more than he could even possibly comprehend, other than to know it was really bad. Or for my daughter, who had to call 911 the third time I went in. For my partner and mother. I will never forget the look on the faces, standing by my bedside in the trauma room, hearing the diagnosis. My sisters face as she walked in the ICU the next morning, seeing me lying there.

I guess most of us can relate to let's say cancer, or a heart attack, a bit easier. (in the sense of knowledge I mean) They are all too common and we all know someone who has been effected. PE's, they remain a mysteryfor most despite how many people suffer from them. I know I did not know about them before my experience. First time for me I think was the reporter from NBC, but even then, no idea. Serena Williams had hers the same week I did. Beyond that, clueless.

All I can say is I am NOT crazy! I am not crazy for feelng anxious. Feeling fear. Worry, fatigue, and so on. Nor am I crazy for being part of, and embracing this group. I will survive this! But it is, and is going to be, one hell of a journey!

I agree.yes one heck of a journey..Education on this illness will help bring more understanding,to all...shame it doesnt come from the medical prof down to us when it happens...
but for me it has helped me to let go of unimportant things..all of you take care and thanks again for helping many others,including me,...

Maybe we are a little crazy. I mean, maybe this thing kicks up so much dust and issues that it does take hold of us that way. I think there is some truth to getting ensconsed in the drama of it all. Not that we can help it, and hey, who wouldn't. My husband thinks the more you hyper focus on it, the worse it is. And I have to say, with time and distance, I think he's may be a little right. But so what. So the hell what. If it gives you solace for a bit to just sit with others who get it, who cares.

My PE was 4 years ago today. Four years gives you distance and perspective. I wish I'd spent less time worrying, more time out of my own crazy thoughts, less time fretting over every little pain and twinge, less time in the comfort of strangers and one the computer in isolation, and more time present and in the moment. Not that you're all just strangers. I found that our shared experience makes me love everyone here. But I should have been focusing more on how I was going to move on, and more time maybe really trying to engage my husband instead of having everything be about the clot. These are just things I am able to consider, now that I'm no longer scared to death that at any minute I'm going to drop dead.

And for me, I think of a day like today, and I think of the WTC and Pentagon and those passengers on that hijacked plane 10years ago, and I think, all that suffering, all that emptiness, all that pain. This PE could have killed me but I'd be none the wiser if it had. It's in living that I think, really, on a day like today, I can't read one more post about how people hate taking "rat poison" (using that term is juvenile to me) or bitching about their INR, or whatever small price we pay to be alive. We're alive.

My hope for everyone who had a PE and who is in recovery is that their world again opens up wide, so your family's and loved one's seeming lack of compassion or understanding can be seen for what it is, just people being who they are, flawed, regardless of your PEs. None of it is personal.

rmb.... I don't think anyone could have said it better!