How many of you have lost family members just because you are sick. I have a chapter in my book on this and want your feed back. Thanks guys Lynn

my relationship with my mother has gotten really really tense as a result of this. she completely thinks that this is in my head, yet i turn to her hoping for some support. she is incredibly critical of the ways that i am living, especially because i have had to make sacrifices to accomodate pots. we had a huge blow-up several weeks ago, and while we have been working on patching it up, our relationship will never be the same. we both said very hurtful things that people should only keep to themselves, and all because she just wants me to be healthy and i just want her to understand. neither of those things are attainable!!!

I don't know if you all remember but I got into it with one of my cousins a year ago. Her outlook was that I was too lazy to work, not too sick to work.

Since then I think our relationship has grown a lot better. I've sent her more research than she could ever read for one! And once I got my amino acid panel done, I felt like that was another point in time that validated my illness.

For the most part it's a general tone from family members that I've been living off my parents because I'm a lazy slob. No one ever dares say that flat out. But little sarcastic remarks here and there under their breaths sort of thing. And you can just feel them pulling away too.

Other times they don't take me seriously when I crash quickly. It's that whole "well you were just fine 5 mins ago so you can't possibly be THAT sick right this second" mentality.

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It's that whole "well you were just fine 5 mins ago so you can't possibly be THAT sick right this second" mentality.

You know, Kitty, I just don't get this attitude. It's been known to happen that someone has just left an appointment with a cardiologist and got the 'all clear' on their heart and then proceeded to have a heart attack before they've even got off the hospital grounds.

Diabetics seem fine one second and the next they are on the ground and someone is pouring orange juice etc down their throats.

But I think you can't convince people that don't want to be convinced. It's a sad fact of life that some people actually feel better about themselves when they can find fault in others. And often the 'fault' they find is totally unwarranted.

And I believe, that sometimes too, the negative judgements some people make of others is really something that exists within themselves not in the person they are judging.

So, if they think you're lazy chances are they are projecting and actually deep down they believe they are lazy.

Baxter: RE: POTS and my family. It's just a name -- it's not an illness. It's as though when they heard the diagnosis they thought the diagnosis was the cure. As in: :Voila! Doctor told her she has the POTS so she's better. All settled."

I am the same. When I have been in the hospital, 7 times in the last two yrs there was no calls, cards, floweers, and Lord forbid, a visit from either of them.It is painful, but what can I do---nothing, I don't think they will understand until I am gone.. At the rate I am going I feel it won't be too long either,
I could put the guilt on them, but that won 't happen either. It is very sad

Last November, I really started feeling awful. I live in DC, my Mom in Las Vegas and my Dad in Hilton Head Island...I felt so awful and my parents kept telling me they thought I was having a nervous breakdown...they said they couldn't stand hearing me complain so much (side note - my dad has a rare and aggressive form of cancer but is currently OK)...once I was diagnosed with a reactivation of mono and POTS in January, they changed their tune. I am fortunate though because my Mom is a retired OR nurse and understands some of what is happening to me...but they definitely originally thought I was having a breakdown and the physical symptoms were because of it.

I have said this many times on this forum but the drs are NOT trained properly to diagnose dys. symptoms...they are trained that any of these symptoms MUST be anxiety or panic and nothing else...esp if a female complains of rapid heart rate, etc.

I read this post yesterday, but didn't want to write anything because I didn't want to put anyone out there like that! We all make mistakes, including myself. I understand that, but at the time when it's happening to you, it doesn't seem very fair.

My last 2 boyfriends, of which I spent a couple of years with and lived with them both.........they gave me terrible grief over it! One told me he was tired of hearing it! Um, don't you think I was tired of living it?? And the other thought that because I stopped working, that meant I should watch his 2 year old. I did manage to convince him to put her in daycare, but I still don't think he ever got it. I loved this little girl like she was my own, it had nothing to do with me not wanting to be around her, but at the time I was in so much pain from fibroids/cysts that I just couldn'd inflict her with that. Nor could I lift her up.

Someone close to me told my new bf and my bestfriend that all I wanted was a pitty-party! That was 4 years ago, before I got real sick. I was in the OR having my hysterectmy. ????? Thanks, nothing like having your support, I thought......but that was before the 'sky fell out' Now, she yells at me because disability hasn't approved me yet, 'What's their problem', she says....I will say this, if it hadn't of been for her, I would of never inherited this incrediable strengh I have for wanting to fight this. I do feel like I have had to prove that I'm sick to the world.

But now that the sky has fallen out, I think those that are closest to me, have a little more understanding of it. Sorry to say it this way, but it helps that my insides actually did fall out, I've had a tumor removed, an abcess removed, 3 heart ablations, 3 bladder surgeries, female surgeries, and the fact that I spoke with a family doctor that relayed it back through the family, that I was in fact 'sick'! SO, what I am saying, is me and my lemon have had to do a lot of 'proving' to get some respect for all this crap!

I hope your doing a chapter on friends, too!
I'm sure there's a story or 2 there! Oh....and co-workers! My lord, can they be cruel!

Your so brave to write about all of this!

Yep, I hope you're doing a "friends" chapter too because those are the ones who have really blown my mind.

The main problem with my family was getting them to understand what was going on. Some members were better at it than others. I had the same problem as others here with once I started feeling better, they thought I was cured and it was over and would be shocked when I had another crash. "What, I thought you were better now?" My parents and husband have always been supportive, especially once they realized something was going on with my heart, so I am one of the lucky ones in that respect. I don't think they realized the seriousness of the situation until they actually saw me in action. Especially my brother....when I actually had a syncope episode in front of him, he was shocked. But, he takes it very seriously now.
My mother was in the hospital for a few days last week because she suddenly went into atrial fib. and wouldn't go back into rhythm. This happened out of the blue with no warning. She's stable now but quite confused and concerned. This gave her a much better understanding of what I go through (not that I would ever have wished anything like that on her but she can relate to how I feel with my heart issues a bit more). She had some syncope associated with her heartrate being so high and irregular and she'd never had that. Now, she keeps saying how awful I must feel when that happens. She also experienced a very high heartrate for quite some time and couldn't believe how bad it made her feel and now knows how I feel with that.
As for friends, well mine must all have moved to Mars or something because they have literally fallen off the face of the Earth. It's been really disappointing and painful for me. I thought I had some good ones but none of them have been there for me whatsoever. I've had several surgeries - no calls, no cards, etc. And, yes, they do know what's going on - they are just choosing not to have me in their lives anymore. Others think I should push myself and if something happens, it happens. Yeah, right....
I'm really anxious to read your book Lynn. Do you have a tentative release date?

Yes, I share how my friends have been like family. I also have a chapter about loosing my parents as a result of dysautonomia, my struggles and how I overcame them. But, as i read your imputs I find it is true what the statics say, most of us are not accepted. I was touched by all of your honest stories. You are all accepted by me. Thanks so much!!!!!!!1

No one in my family believes I'm sick except my DH. They all think I'm delusional. They don't ask how I am, they have no idea what the illness is or do they care. When they are telling me how sick they are if I mention that I have a similar problem caused from Dys, they totally ignore me. Shows what a great family I have. If they didn't understand what Dys is & cared, they would at least ask me to explain the illness.

I would have to say friends and my past co-workers that had become friends just do not understand this part of me not being able to make it to all the functions they use to invite me to. A few are still understanding as they have seen me turn gray and severe weakness/incoherent, but those that have seen me not as symptomatic aren't as understanding... however my husband gets really upset at his family (some of them) for not getting how everything affects me, so that helps validate it a bit. But he too, at times states how 'inconvenient this illness is', so we all get frustrated by how dibilitating this illness is.

I guess that it has made me stand up for myself. People used me as a scapegoat (my family), and now I don't allow it. If they are rude, condescending, etc. I don't communicate with them. I make them come to me, and I tell them what I think of their lack of understanding. And the more I sense that people don't want to hear about it, the more I force them to listen. (rebellion on my part, but I am tired of being brushed aside.)

Most of my extended family members do not “get it” because I do not typically “look sick”. They do not understand that because I don’t look sick I can still feel horribly ill and cannot function many days. My in-laws and the “other side” of the family are even worse. They feel I have placed an unnecessary burden on my husband by not working and “pulling my weight”. Fortunately both of my daughters are registered nurses so they do understand and have been positive advocates for me.

I have too have had many sick days, emergency room visits, doctor appointments, days in the hospital and family members don’t call, visit or offer to help. I’ve sometimes gotten more assistance from complete strangers at my church before family has come through for me.

Friends and co-workers are often no better. They might send a card in the mail – typically not hand delivered because then they might feel obligated to have to ask if I need anything and people always just seem so busy. Busy, busy, busy. Too busy to help a loved one? I call friends to go for a walk, have coffee, etc. and everyone is too busy. When I am really sick I try to get a ride to a doctor or to get someone to pick up a prescription if my husband is out of town you’d think I had asked for the world.

Since I stopped working it gets lonely. After I left the professional arena my co-workers promised to “get together for lunch or happy hours occasionally to “keep in touch”. Yeah, right! I call to schedule with them and it’s always an excuse about how busy they are. They all still get together with each other for lunch and after work for drinks and dinner…but because I am not part of the “professional working girls club” now I guess I don’t fit in their group anymore. I only live a mile from where I used to work.

Sorry for the venting…this hit a sore spot with me. I have always been one to reach out and help others when I could. I believe we are supposed to love and help others. You know, love God, love others…

Lynn

I remember when my mother was the least understanding person with my NCS. She thought I was just "being lazy" or that it was "all in my head" and positive thinking or threatening or yelling would pull me out of it. I couldn't pull my head off the pillow for months before noon and yelling most definitely did not do the trick!!

It's kind of funny because she'll read this later, but we talk about the fact that now she has POTS. She apologizes at least once a week for not believing me because now she truly knows the frustrations. At one point she said, "this serves me right." I was quick to point out to her that just because I had it did not mean I wanted anyone else to ever experience this! In fact, I didn't want anyone to experience it ever!!! She just wanted her daughter to be healthy (which I've never been) and I just wanted my mother to understand...sounds familiar GracieTiger! We can't expect healthy people to understand it, they haven't experienced it. Those who experience are those who empathize! That's why we're all here on this wonderful forum

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Originally posted by Living4mygirl:
But he too, at times states how 'inconvenient this illness is', so we all get frustrated by how dibilitating this illness is.

Now there's an understatement for this illness 'an inconvenient illness.' I wonder what a 'convenient illness' is?