Pots Affecting Friendships

[AllAboutPeace]

Wondering if anyone has experience dealing with this...

I have been very fortunate to have great friends, but there are two that I would have said were my absolute closest ones. Ten years ago, my husband changed jobs and we moved 5 hours away from these friends. So every year in the spring these friends have come to stay with me for a week-end (my husband and son go stay with relatives) so we can have a good visit together. We've enjoyed these week-ends so much that we have added a second one each year. We have the kind of relationship that we have lots of fun together, are honest (even if it's not what we want to hear...it is always what we need to hear) and very supportive of each other. Conversations, e-mails, etc routinely end with "love you's". So, when I got sick 6 months ago (the day after our week-end together), I received the expected outpouring of support...which lasted probably about 4 weeks.

Since that time, I still get e-mails telling me about what is going on in their lives and ends with "hope all is well" and "love ya", rather than "how are you", "how did your doc appts go this week", etc etc.

One of these friends thought she had melanoma a few months ago and wasn't getting support from her doc. I called her and advised her on how to handle the situation and told her to remember that she is worth every effort. She followed my advice and was seen by a specialist quickly and told she didn't have melanoma. Meanwhile, I had a breast biopsy the next week and they didn't even ask when I'd get the results, which is usually the first question from anyone.

I'm really hurt and quite shocked by their lack of support because I know them to be such supportive and caring people. Those around me are very suprised by this as well. But, I have no idea how to handle this. They are asking now to get together again and even if I thought my body could handle it (which of course it can't), It just isn't the same for me now. I guess I just need to come to terms with the fact that it just isn't the friendship I thought it was.

Has anyone been able to navigate through something like this?

[issie]

Sometimes, illness especially of the chronic kind is something people just don't know how to deal with. Sort, of when someone dies - people feel bad but don't know what to say - so sometimes they say very little or nothing. It's sort of that way with POTS - to our friends we are alive in our bodies - but sort of dead as far as being able to do what we used to be able to do. They probably don't know what to say or how to feel themselves. It sounds like they are still trying to include you in their plans - but, they themselves are not sure what to expect. I bet it's just as awkward feeling for them. I've always found that the best thing between friends is open and honest communication. I've always attacked a problem head-on - even if it is paniful for me. It may be painful for our friend too - but, if the friendship is worth saving - it's worth a little pain to try to figure out what's wrong with it. If you can talk through your feelings and they can talk through theirs ---I'm betting you will feel just as close again.

Sometimes, we pull away a little too - because, we just are uncertain about how they feel about us. We don't know how we feel about ourselves much of the time - because, this illness takes away so much of us and our identity. We are still the same person - we just have to find other ways to express ourselves. I don't know a single person with this illness that hasn't experienced these feelings. (But, not sure all of them talk about it.)

One thing I've decided in my life --when I take my last breath - I don't want to have any regrets of things I didn't do or words I never spoke. If these girls have been your "soul sisters" then by all means they are worth a few hours of painful conversation. Hang In There ---you know you might be surprised how much fun you'd have if you just have them come on over and have that big "girls only" slumber party. I'm sure they would understand if you didn't stay up all night or participate in the pillow fight. Enjoy, what you can - - that way there won't be any regrets.

Issie

[roxie]

Yes, definitely. Doesn't it feel as painful as our illness itself?

I think issie made some very good points  

I struggle with friendships too, so I don't have a lot of advice. When I'm not doing well any friendships I built during a "better" time fade fast. 

I do my best to keep up online and such but they have their own lives and are busy. 

One thing about your friend with melanoma & the your biopsy,  I think from what we have gone through we are much more sensitive to the struggles others go through so we see the importance of being there and having a kind word. 

Those who haven't gone through extended things like we have don't realize the importance of it. 

Relationships do change and only

you can decide if the weekend is worth it for you. Will you feel emotionally better just having a little time with them?  

Or will you feel jipped and sad that things aren't the same?

I know people that do both to me and it's something i try to think about. I heard once "does it tire or inspire?". And try to place my energy on those that'll keep me uplifted. 

Like issie said, many don't know what to do or say.  When I was sick in HS that's what people told my cousins- that they were afraid of me &  didn't know what to say.  

I felt so much like I had to constantly prove I listen to the same music, watch the same movies, and am every bit a normal person yet it didn't help much. So, its likely your friends are just as confused as you are. 

One thing I LOVE that you told your friend with melanoma is that she is every bit worth having good dr's who listen to her! YOU are just as worthy of friends who listen to you, don't forget that.   

Will the weekend inspire you more than it tires you?

[Maiysa]

I'm really sorry Peace. Issie had some great great advice. I agree with her. And for people whom have an extended illness, I have found this to be very typical, unfortunately. I had lived here for about 6 years and after I got sick friends slowly started disappearing. I was told that one of them said, "if the doctor hasn't found anything by now, how sick is she really?" First of all, it was obvious I was sick, I am a middle aged girl, am 5'6" and got down to 113 lbs. I had lost 17 pounds and looked terrible. And weeks later, I found out I had cancer and a hole in my lung and a serious infection, on top of the dysautonomia and mast cell that were yet to be diagnosed. I was so ill at the time and felt quite abandoned. You learn a lot about people when you are sick that's for sure. Anyhow, I moved on, but it was hard. I still have my friends from when I grew up, and I focus on them, but they are far away. So after I picked myself back up, I joined a local church group and found great support there. I also invited people over for tea and dessert whom I just knew in passing and have made some great new friends this way. And I would like to say, in my past friends defense, I think that until one goes through all of this, they can't understand what we live with on a daily basis. It really is an invisible disease and so hard for others to understand. And I know it was depressing and very hard for them to see me not the same silly girl I used to be. I think it wasn't easy for them. But I feel terrible for you. Hang in there. It will get better.

Maiysa

[puppylove]

I agree with everyone, and I completely relate to what you're going through. About a year ago when I didn't know what was wrong me my friend who would sit with me at lunch told me she wasn't going to anymore because I was "boring" now. I didn't feel like talking because I felt like puking. Anyways, she was not the nicest friend to begin with, but my real friends have become so distant lately too. They really don't know what to say anymore, and I think they are tired of hearing me talk about it. I have to work to keep the friendship going since I don't go in to school anymore. But I'm going to keep trying because they are worth it. It's really lonely though and I always feel out of the loop. I'm sorry you're going through this too. (hugs)

[Birdlady]

I think we have all gone through this. For about 8 years, I kept hanging on to old relationships. I'd come up with excuses and reasons why they weren't keeping in touch. The best thing that ever happened to me was one of those "good" friends did not invite me to her wedding. I went through my phone, FB and started deleting people who only pretended to care. Perhaps it was a bit impulsive, but it was my wakeup call that the people I used to call my friends were nothing but strangers. Regardless of our past, they did not care one bit what was happening to me now. I needed to let go all of my anger, frustrations and find people who really did care.

I am happier now because I've finally let go all of that baggage. I am making new friends with other POTSies and others who have chronic illness. I don't have to explain myself 2632 times when I can't make it or don't want to talk etc. They are also ok with keeping in touch online too and "going out" isn't a necessity. Most "normal" people want to go drinking and do activities I simply can't take part in.

So anyways, I know my story isn't exactly cheerful, but it's the truth. I finally just had to cut all ties and move on. I can't make someone care and in the long run it was only hurting ME. Not them.

[AllAboutPeace]

Thank you so much for your support and wisdom...you've given me some things to think about! I wish you hadn't all been through this, but I appreciate you sharing your experiences.

I think part of the problem, as Issie touched on, is that 'I' do feel different - everything for me has changed and they have chosen not to come on that journey with me. They used to know me better than anyone, but that isn't the case anymore. One of them told me that "this is your cross to bear and one day we will sit back and laugh about it". I hope that is the case, but right now with all of the uncertainty every day, it sure feels pretty raw right now. I do laugh about it regularly with those in my life who are on the journey with me, but they go through all of it with me and it's a coping strategy. Isn't it at the very core of friendship that if your friend has a 'cross to bear' of any kind, the place for a friend is by their side?

Whenever I would feel disappointed by their lack of support over the last several months, I would think "am I doing my part?". Like you said, Issie, I don't want any regrets. So I would initiate contact with them,asking them about various aspects of their lives and telling them that I'm feeling a little 'out of the loop' or that I'm having a harder time staying positive, etc. They vent about their daily struggles and I empathize with them. One of those 'vents' was about my friend being sick with the flu for three days and how her husband had to do all of the 'extras' around the house for those days and how awful that was. I empathized with her because this was obviously tough for her...but part of me thinks...seriously??? I've been housebound for 6 months and my husband has had to do everything. I am very aware that people deal with things that are much worse than I am dealing with - everything is relative.

As many of you mentioned, I know that this is hard for them as well and one of them did say that she didn't know what to say to me when I was very sick and hospitalized. I've seen her avoid visiting people in the hospital, not going to funerals, etc because it isn't comfortable for her. I could never fully understand that because as strong as her need is to avoid it, mine is an intense need to be there. I have always respected her needs though. I guess I just hoped that she would be able to get past this in order to be there for her "best friend".

I'm a 'lifer' when it comes to friendships, so I am really struggling with the fact that I feel this slipping away.

Thanks for your support

[issie]

I empathized with her because this was obviously tough for her...but part of me thinks...seriously??? I've been housebound for 6 months and my husband has had to do everything. I am very aware that people deal with things that are much worse than I am dealing with - everything is relative.

I'm a 'lifer' when it comes to friendships, so I am really struggling with the fact that I feel this slipping away.

I totally understand what you just said - - I had a friend go on and on about how a cold was about to "Kill" her and I had just survived a (unoperated on) ruptured appendix, ulcerative colitis with 2 rounds of chemo, and pneumonia all at the same time -----if anyone had the right to claim "near death" it was me. But, I just sat there in silence and nodded. Thinking ---if you only knew. People get wrapped up in their own lives and their own world that they create around them - sometimes they just can't open their eyes up and see anyone elses world.

Also, I'm a lifer in my friendships too. When I allow myself to get close to people and open my heart up to them - I have included them into "my" world. I put my heart out to and for my friends. I've had my heart hurt way more then I would like to admit. I usually will make excuses for my friends and try to find their good and overlook their bad . . .but, sometimes, just sometimes ---you come to the realization that the person you thought was your friend - it was only a one-sided give relationship. They either don't have the capacity to feel and love as deep as we do or it had always been a give-give relationship and we just didn't realize it. We form friendships because we have a connection with someone (for whatever reason). We always get "something" from a relationship with someone. Sometimes, though - whatever it is we "get" from it - starts to become more toxic rather then beneficial. Because of our nature of being a "lifer in our friendships" - we tend to try to hang on to what once was and want that back ----when somewhere along the line, things have changed. No longer is it a good situation for us to be in - it has turned into something toxic to us. We have to know when to draw the line and say enough is enough. If there is no more "give" on our friends part and we're the only ones that seems to "care". It's turned into something not good for us at that point. If you are the only one asking how "they are". Then somewhere down the line -----life is all about them and their world. You need them in "your world" too. It's a hard place to be - because we feel a whole lot of grief at that point - almost like the death of that person. We grieve for the friendship we once felt for that person - whether or not they ever felt it for us. We Loved that person with our hearts and our hearts are broken. It takes time to get over that feeling and realizing that it wasn't us who turned our backs on them . . .it was them that turned their backs on us. We still have the capacity to love ---it's nothing against us ---it's good we have that quality. But, it really hurts when things change with the loves (in friendships) in our lives.

Not saying this is the case with your two friends ----but, it could be the case. Don't think you are the only one that this has happened to. Some of us have been there and understand all too well how much it hurts your heart. But, don't let it make you hard and afraid to put your heart out there again. For all the friends who have hurt my heart - I never regret loving them and caring about them. For the time, I enjoyed them and got something from the friendship that I needed. But, it's letting go that is the hard part.

Hang In There - darlin - there's others out there that will care and love you and be your friend. Don't be afraid to love others ---it truly does make the world go around.

One phrase that I've always loved is this by Anais Nin "We Don't See Things as THEY are, We see them as WE are." It's so true. We only see things with our perspective in mind - our experiences, our thoughts - when the truth according to them may be a totally different perspective as to how They see things.

Something that I wrote and have on my desk is this: "Don't think about how it was before - that was yesterday. Look forward to tomorrow. Think about what you can do "GREAT" today. We can't undo yesterday, we can live today and we can DREAM for tomorrow." - by Issie.

Issie

[Maiysa]

I loved Dana's and Issie's points. Very good. I found this letter on the Joint Hypermobility Syndrome web page in the UK and when I read it I thought it was perfect for what I was going through. But it also applies to dysautonomia or any disease for that matter. Read when you have time:

Friends and family

How many have found it difficult - almost impossible to share with our partners and families our feelings about living with HMS/HEDS. A member wrote this letter to explain her feelings and has allowed us to reproduce it for others to use:

Dear Loved One,

I am sending this letter to help you understand my feelings as I deal with HMS/HEDS and the changes it brings to my life. I am scared. I don't know what the future holds for me. Will I end up disabled, in a wheelchair or will I be one of the lucky ones. If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.

I am angry. HMS/HEDS has taken so much away from me. I can no longer do many of things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry please understand it is the disease I am angry with, not you.

Please don't assume you know what is best for me. HMS/HEDS has affected my joints, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can't skate with everyone else but I can bring the hot chocolate and watch.

Don't tell me how Auntie Mary cured her joint problems by drinking vinegar or any other supposed remedy. I have done much research and I keep up on current treatment options. I speak with my doctor regularly, if there is a possible treatment out there, I will know about it.

Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu, tired, achy and sore. Please keep that in mind.

I want you to know that the pain from HMS/HEDS moves around. Just because I climbed the stairs yesterday doesn't mean I can do it today. Yesterday my shoulder was throbbing; today it is my knee, who knows what it will be tomorrow.

Finally, please remember that I am the same person I was before I was diagnosed with this; HMS/HEDS doesn't change the heart and soul. I still laugh, I still cry. I still love and I still hate. I am me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.

[CarrieJessica]

I think this is something we all have or will go through. I am newly diagnosed, still conflicted and getting a second opinion and have already faced some awkwardness. Some of the few people I have shared this with seem to have all my same symptoms (they passed out once, or get dizzy when they stand up or are always tired) they have a hard time grasping no, that one time you are telling me about is every day for me.

Just had a heart to heart with my bestie. Before this last year we were the stay at home mom duo of almost a decade. I am an Army wife so I moved away (several moves as a matter of fact) but we still talked every day. We talked about all the joys but lets be real... we complained about being tired, over scheduled, under valued by career piers and did I mention tired. Before being diagnosed I often dismissed my symptoms and underplayed them to my own detriment. Now that I am knee deep in second opinions and talk planning a trip states away to a specialist she was left thinking 'well this came out of a blue and you were fine a few months ago' . She did finally tell me she didn't know what to say to me because she felt like she couldn't vent to me about anything because now I was sick.

Even my very supportive dad has said 'you have symptoms all the time now, do you think you are over obsessing on it'. I had to explain to them that I have had these symptoms for awhile and thought it was just my normal, now that I know these are symptoms and not just me they are more apparent, and yes I am very focused on autonomic dysfunction, I am sorry if I mention it too often, I am learning alot about my body and how it works and that is very interesting and in a way it is energizing to research my options. I don't want to have this and don't want to go to docs all the time, but its me and I have to so I can only learn more to my own benefit.

[Birdlady]

I personally think the letter from the Joint Hypermobility webpage is way too harsh. Imagine for a minute if someone gave this to you...Would you feel more welcomed in their lives or less welcomed? The tone is very snippy, condescending and standoffish. I think it would push more people away than getting them to understand more. Even though everything in that letter is the truth, you can't just expect your family and friends to stop giving advice, caring (in whatever way they do), relating by talking about joint pain a relative has and saying you know it all and you know what's best etc. ugh... I think this letter would do more harm than good.

If someone is offering stupid advice, just nod your head and thank them. Even if you know it's stupid just go along with it. They took the time to look it up and are only trying to help you. It's not meant as an assault on our illness and our suffering. I think at times we are too sensitive and we need to be more mindful of how we respond to others.

Any ways...thats just my opinion.

[peregrine]

Dana - Hmm, I disagree with you somewhat on how to reply to people with suggestions, etc. But your mileage may vary, as they say...

For me it depends on the person. If it's a random person on the street (this happens to me occasionally, usually when someone sees me with a cane or sees me limping), then I just shrug it off, thank them for thinking about it, and move on. If it's a family member or a friend that I see often (or even, a few times, a doctor I will be seeing more than once) I thank them, but also try to gently let them know that most of the standard suggestions are things I've already tried or I know won't work. Why be pushy like this? A few reasons. First, it lets them know that the problem is real, I'm not faking it (a common problem), I may have to cancel events suddenly, etc. Second, since I will be seeing them somewhat often, it keeps it from coming up again - and it hopefully keeps them from feeling like they need to research something for me. Third (although hopefully this doesn't happen to everyone, and rarely to me), it keeps person #2 from telling me that I would get better if only I had done what person #1 suggested in the first place. And fourth, it keeps people (again, hopefully infrequent) from trying to guilt-trip me for something entirely out of my control ("if only you'd eaten a better diet" etc). By speaking up and emphasizing that I can't cure it with the commonly known joint treatments (ibuprofen, glucosamine, fish oil, etc) it sends the message that this is something unusual, something to keep in mind as an out of the ordinary thing that has to be taken into account.

I think for a lot of people how they react is a matter of perspective - e.g. for them, feeling like they have the flu is really terrible (and it is!) but for me that's everyday. But, like AllAboutPeace says, it's all relative - I'm not struggling to have a place to live, or worrying about a loved one overseas. Though I do sometimes feel abnormally put upon by the universe :^)

But! I hear we all have somewhat different situations. When I found the HMS letter some years ago I thought that a few things there were put a little more baldly than I might put them. But since then I've found that family and friends that didn't get that "wake up and pay attention" style of letter or sit down conversation (or hadn't seen me at my worst off) often just took my issues for granted, didn't ask whether I was up for something on a given day, or just kept walking super-fast and completely ignored me limping and dizzy along behind because they assumed it was "just another type of sore joints" or something like that, or ignored my asking them to slow down because they just assumed I was out of shape rather than asking why I wanted a slower pace. So personally I find being direct is the best for me. Like I said, your mileage may vary, just find something that works :^)

[issie]

I've found it's just better to listen and think to yourself ---they just don't know, if they did they wouldn't be saying that. If they are open to talking about you and want to know more - then you may have a chance to redeem them from their ignorance But, many times - they are not open to wanting to know the nitty gritty of what we have and what we go through. It's sad - but, they are wrapped up in their own world. I mean really WE don't understand it completely ---how could they possibly understand it. That's what's so great about these forums - we can come here and people DO understand.

I used to think it was best to try to have everyone know what was wrong and why ----but, when you try to tell them - after the first few sentences their eyes glaze over and you lose them. It's better to just tell them at the time ---oh, I'm really dizzy right this minute ---wait a minute and let this pass. Or, I have to sit down. After awhile they will know what your symptoms and reactions to those symptoms are. We don't have to spell it out in a long dialouge of what is going on with us (unless they really want to know). If they are truely our friends --with time - they will know. People can just look at me now and know when I'm having a spell --I lose most of the color in my face and/or start shaking or some other thing shows (even when I don't realize it and may be trying to cover it up.) I have sent my closest friends the link of the video "Changes" and many have looked at it - but many have not. Those that looked at it are the ones I know really care about me - those that didn't are the ones - I know to just nod and listen to and thank them for their advice - cause they really just don't know and seem to be okay with that.

Issie

[Maiysa]

Dana, What? I would never talk to someone this way. But I thought it was just a nice fantasy to really be able to say what I was feeling. When I read it it made me think that someone was understanding how I was feeling. It made me feel not alone. I would never talk to someone like that. That's funny. I said read when you have the time, not send to it to your family and friends. It was simply meant for Peace to know that many feel the same way. I thought it was funny when the writer said, I don't want to know how Aunt Mary cured joint problems with vinegar. That made me laugh because I have so many people wanting to help me and they come up with some wild theories. I would never ever be mean to someone who thinks they are helping me. It wasn't meant as advice just something to relate too. Wow, I am not coming across in black and white very well.

Maiysa

[issie]

LOL - Maiysa. No you wouldn't - I don't think any of us thought YOU would do that. It's just, ----it might be something we "think" but actually doing it -----NADA! Of course, some may think that's the way to go. Like periguine - she feels the direct approach is better for her.

Issie

[Anoj]

to the original poster, i could have written a similar post myself. after seeing all the responses, i have come to understand that this may be common for those of us with a chronic illness. at least we understand each other. i see that your friends at least still keep in touch with you, although it may not be the same. in my book, that's great! at least you're getting something. i have a few very close friends who simply will not call, or even return my calls for that matter. and, i wish they would very badly. especially on bad days when i'm stuck in bed or can barely function. i've had days of feeling alone and crying.

when my POTS hit, i was at a friend's house, doubled over on the floor of his bathroom. he offered to send me to the ER. i declined. (i shouldn't have.) the next day i had the same problems and really did end up in the ER. i texted him to let him know where i was and NOTHING. that was the beginning of the end. repeated texts/voicemails and no returns. it really, really hurt. we were very close.

another friend who suffers from chron's takes the attitude of "it'll get better, i was in bed for 9 months so you will be fine one day." well, i'm happy for him, but it's been a year and a half for me, and medicine doesn't make me functional the way it does for him. also, a lot of his time spent not functioning was because he didn't have a diagnosis. once they figured it out, it's been uphill for him.

like dana said, i recently defriended some folks on FB. i didn't want to, but the bottom line was i was tired of seeing their faces, their words and not to mention their friggin good times while most of them seem to have forgotten about me. i have a total of ONE friend from my previous life who actually calls me, so i have been really lonely. i want to surround myself with things that make me feel good, and being ignored on facebook just didn't feel good.

the funny part is that even i am sick of my own self talking/thinking/worrying about dysautonomia. so i can understand why someone else would, too.

i just think some people don't have the maturity to handle things when it hits the fan. and, as issie said earlier, that is NOT my personality at all. i tend to extend myself greatly in relationships, which usually result in them being being one-sided. i find it difficult to even get the support i need from my spouse, much less friends.

[Maiysa]

Haha Issie. Again, Blog break for me. I wish I could say those things on the letter. So funny, I just had someone say to me the other day when they asked me if I wanted to meet up with them and they asked what in the world is going on and why I have a possible sprained occiput. So I text her the new diagnosis, and she said, I think it's best we not talk about those things. I don't like those words. haha. This is how it's going for me. So I kind of give up and have learned a lot of people just don't want to hear about it. Oh well. So thanks for listening. I have found its RARE.

Maiysa

[issie]

Yeah, I've seen that look -----glazed over eyes and closed up ears. Sad but true. Again, sometimes, I don't think people know HOW to respond. It's painful to them because it's something they don't understand. My goodness we have those times of complete desperation and being overwhelmed ---that's with us somewhat knowing what we're dealing with ---how must it be for our friends that think we have some exotic rare disorder. ( Even worse when we do!!!! Ha!Ha!)

Issie

[peregrine]

Maiysa - haha, so true. Some of the stuff that's there I wouldn't even say to my partner! I personally would probably tone most of it down a bit! The thing I always have to sit down and think when I meet a new person is... how much do I want them to know? Are we going to be interacting just on occasion - at social events run by other people, or work events (if you work, or volunteer, or do some other regular activity)? Or am I going to be getting to know this person very well, and should I give them a five-second elevator speech about making sure things don't go awry (that's my more direct cut-and-dried approach, I think)? Most of the time the long-winded explanations are for family and friends who already know something very weird is going on, or for people who are curious (which always makes me grin). Always a tricky area for folks with any chronic disease, really.

[Birdlady]

Sorry I didn't catch on to the sarcasm in your post. I suppose the first line of the letter is why I thought it was meant to be sent. My mistake.

Dana, What? I would never talk to someone this way. But I thought it was just a nice fantasy to really be able to say what I was feeling. When I read it it made me think that someone was understanding how I was feeling. It made me feel not alone. I would never talk to someone like that. That's funny. I said read when you have the time, not send to it to your family and friends. It was simply meant for Peace to know that many feel the same way. I thought it was funny when the writer said, I don't want to know how Aunt Mary cured joint problems with vinegar. That made me laugh because I have so many people wanting to help me and they come up with some wild theories. I would never ever be mean to someone who thinks they are helping me. It wasn't meant as advice just something to relate too. Wow, I am not coming across in black and white very well.

Maiysa

[AllAboutPeace]

Yeah, I've seen that look -----glazed over eyes and closed up ears. Sad but true.

Issie

That's the exact expression I get from my doctor

It is hard to find that fine line of how much to tell people. You want them to be aware of what is going on because we really need support, but you don't want to complain. At the same time if you say too much they are overwhelmed. In my experience, the people that care will ask questions.

I ended up sending an e-mail to my friends last week, after receiving some vents from them with the subject line "life". I acknowledged and supported what is going on with them and thought this was a perfect opening for me to share what has been going on with me in my life. I went on to express what the past several months have been like for me (not in medical terms, but in emotional ones - how it feels to lose your independence, struggle with daily tasks, live with uncertainty, etc, etc, etc). I thought that if there is a chance they can relate, it will be on that level...we all have emotions. Anyway, it's been six days since I sent it and the only thing I hear is crickets chirping...no response thus far. It's ok though, I know that it would have been hard to hear those things because truthfully I think they just wanted to ignore it. I feel better having sent it anyway.

Bananas - I like your "does it make you feel tired or inspired" - I think it's a good motto to live by

Issie - We all benefit from the fact that you so readily share your heart with others. I'm glad that you haven't let being hurt stop you from doing that. I was too emotional after reading your post yesterday to respond to it then. Thanks for your support and for sharing those quotes - very meaningful...

Anoj - I'm sorry to hear that you are struggling with this right now.

Here is a link to one of my favorite coping songs if anyone wants to listen...

Thanks everyone...

[issie]

Allaboutpeace, glad you liked me "sharing my heart" - I hope it will help you and others. LOVE THAT SONG!!!!!

Issie

[Elegiamore]

OMG, my heart goes out big-time to all of you re: this subject. Because it is the worst part of this all, short of dying.

I wish I had a positive answer on this one, but after decades of POTs and more, moving into shut in territory and conversations about going to hospice, my last friends (from childhood, no less) finally left. Dana has it right, unfortunately; and this nails it:

"i just think some people don't have the maturity to handle things when it hits the fan. and, as issie said earlier, that is NOT my personality at all. i tend to extend myself greatly in relationships, which usually result in them being being one-sided. i find it difficult to even get the support i need from my spouse, much less."

And now, that I see this clearly, I absolutely despise most of my family and friends; immature losers afraid of their own shadow; "church-going" people who have told me they were too busy with Bible Studies to take me to the doctor! I've lost my faith in people now that I see that most of them are self-centered, cry-babies who couldn't walk a mile in OUR shoes with a gun to their heads!

MY BEST FRIEND lives out of town and has for the last ten years. She hasn't come home (4 hour drive) to see me in any of my hospital stays, even heart attacks, ICUs, etc. This week she committed to visit me on Saturday before Mother's Day. Then she emailed me that she had made "other plans" so Saturday was out. And that she was penciling me in for Friday afternoon between 4:30 and 5:00 p.m. IF she could get here before traffic and ;not miss dinner at her mom's. No calling to ask if it would inconvenience me. Just ASSUMING THAT I DON'T COUNT as a real person and I can just **** well fit HER SCHEDULE. Even worse, I had asked very nicely for her to come see me, just this once. I have gone to see her even though the trip led to three months of illness and hospitalization. But she won't do it for me.

What to do? I've stood this for ages. Yes, I have about five close friends that are NOT afraid and don't get the actions of the others. But finally, this week I too have flipped. I simply cannot stand being a sub-human any longer, to my friends, family and of COURSE to my so-called doctors. After all this time, I HAVE LOST THE WILL TO LIVE. I feel TOO SICK to stand being dumped on any longer.

So thanks, dinet friends and pals, for listening up to now. And for the support throughout the years.

This post is helpful in that at least I know that maybe, just maybe, it isn't that I became uninteresting or unlikable. It because I have POTS, etc. And because people in today's world are heartless and cruel.

[Maiysa]

Elegiamore,

Your post made me feel so terrible for you. Hang in there. I hope you are okay. This too shall pass. I'm going through this as well still 6 years later and it doesn't seem to change. I had more comments than usual this week and just after I was bragging that I still had my childhood friends. I have a friend telling me that she healed her autoimmune disorder by just ignoring it. Ahhhh. It makes me crazy. I think it's easier to ignore something if it's not affecting you on a daily basis. Also just a few days ago, I wrote my best friend a note to tell her that I'm on my way to get an MRI as they thought I was having a brain bleed. I told her to not worry about it because I was sure it was just a sprained occiput. She wrote back but didn't mention it, but did tell me that she's reading self help books about being positive and that she can barely stand negative people anymore and that she realizes how much control she has of herself now. I don't know if that was meant for me or what, but I'm really sensitive to these things now. I have realized that I might need a counselor because I don't know how to be sick, although I've done it for 6 years, I'm not very good at it. IT's not who I am as I'm sure it's not who any of us are or thought we would be. I was always the happy go lucky big lover of life. But I'm obviously not that girl anymore, and I'm sure it's hard for them too. But I would never abandon them. I had three best friends, but one just turned so mean one day and I asked trying not to cry, why are you so angry with me? And she said, and I quote, "I'm sick of your sick arse!"(sorry can't swear on here, but you get it) I thought I was going to die. You would have thought someone died the way I took it. I never saw her again. This is a girl who went through terrible depression and I spent hours with her on the phone helping her till all hours of the night, making her doctor appointments, consoling her non stop which by the way got exhausting but she was my friend and I loved her no matter what. But when I got sick, well that was the end of that. But maybe that's for my benefit so I can make room for real friends. I'm going to quit even mentioning anything if I can to my friends and family. I don't want to explain anything any more. I'm over it as I'm sure they are. I obviously need to change something. I guess all I can control is how I react to my illness. So so hard to do. PS I'm not lecturing you, sorry if it seems that way, I'm saying this out loud so I can try to help myself. I think once I get a complete diagnosis I won't have to focus on it as much. I am so grateful to the blogs as they help a lot. Nice to have a safe place to go. And to have support. Hang in there. I promise there are some wonderful people out there. Hugs to you.

Maiysa

[issie]

Eligmore,

I feel so for you and I know your story. I wish you would tell people more of it. I'm one that tries to say SOMETHING even when I'm not sure what to say. Right this minute, I'm not sure what to say. I know how your heart must ache and I can sense your pain. I wish I could take all that has happened to you away and fix the broken body that you have. But, honey, you havn't died yet and you still have fight left in you. There's not a lot you can do, but there is a lot that you can appreciate. We can't change others around us - but, we can control how we react to what they do or say to us. If we are angry and hurt -----that only hurts us ----it doesn't hurt them. We have to find a way to make peace within ourselves and comfort ourselves. If we can find a way to let go of the bittnerness and anger and find a sense of calm and solitude within ourselves - our troubled minds and hearts will be at peace.

I'm so sorry that your friends are not there for you and I do understand how you feel about it. This is when you need your friends around you and it sounds like you do have some that are sticking by you. Enjoy them and appreciate them. They obviously love you very much and despite having to see you so sick - they have found a way to deal with the grief that they feel for their friend that is so ill and are there for you. Thank goodness for GOOD friends.

I'm glad you felt like coming here and sharing your thoughts on this. It is a hard subject. We all have periods of grief for one reason or another. With this illness we are going to experience it. That is okay and perfectly acceptable . . . but then we need to try to figure out a way to get past that, and if we must, have acceptance. Some of us will not get well from this - it is a fact. For us, that are in this place - for me - I try to live each day as it could be my last and try to not take anything forgranted. I try to tell my friends and family that I love them and share my thoughts and heart with others. I don't want to have any regrets when I take my last breath. If there is some unfinsihed business that I need to take care of - I try to do that. And I also try to not let the sun set with me or anyone I care for in a provoked or angry state. Life is too short for regrets. Your friends are the ones that will have them later - don't allow yourself to have any now - cause we know how short time can really be.

Hugs to you, my dear, and know that I'm thinking of you and wishing you a peaceful heart and love to surround you.

Issie

I've PM'd you a couple of times and you haven't gotten them. I hope they came through to you.