Need Advise!! Breaking The News..

[wareagle]

Hey guys...I've come across a situation that I thought ya'll might be able to help me with. Last week I got an e-mail from a guy I knew way back in high school...we haven't seen each other since graduation (12 yrs. ago) so needless to say I was very surprised to hear from him. I actually lost contact with all of my friends from back then after I moved to AL for college. At first I was really excited to reconnect with someone from that time in my life..it brought back so many great memories..but then I realized I had no idea how to answer the dreaded question "How are you?".

I decided that I would respond with a "glossed over" version of life since high school...(ie. I didn't really say anything specific and simply turned to neutral topics like congratulating him on getting married etc. and asking about other class mates). I figured that would be the whole of our correspondence...but then he e-mailed me again...and again the loaded question "how are you?".

I have no idea how to answer. I mean what am I supposed to say..."Well, things were going great...got my degrees...had lots of fun in college...started a wonderful career...then 3 yrs. ago I was knocked down by some mysterious disorder and now I live at home with my mom, am on disability, and only leave my home on special occasions (doctor apts.). No, I'm not married...nope..no children...nada on the career...what do I do all day? Well, most days I use up all my energy attempting to fool myself into believing that SOME day I'll be better and distracting myself from the reality of my life."

I know that I didn't ask for POTS and I know that there's nothing I can do to change the fact that I have POTS...but sometimes I'm really ashamed that I'm so sick. It's almost as if I'm being defined by this illness and I hate it! I just feel so pathetic sometimes...and I guess I'm embarrassed that I don't have any acheivements to speak of. Everyone's going forward with their careers and creating families. It's like someone pushed pause on my life and forgot to restart it. And while I'm sitting here...patiently waiting...others are out there living the life I was "supposed" to have. I feel like I'm being left behind and pretty soon I won't be able to relate to my peers anymore.

So, what do I say to my old friend? I guess I could lie...or be vague again..but I feel he deserves more than that after reaching out to me after all these years...but does he REALLY want to know "how I'm doing"?

I could really use some advise on this one guys...it's really stirred up a lot of stuff for me and I just can't seem to come up with an appropriate response.

Thanks for listening...love to you all.

[Suzanne]

I feel for you, but what have you got to lose by telling the truth? Like you say, you didn't ask for POTS, so you have nothing to be ashamed of. It seems that you are having trouble finding any meaning for your life and whilst this is understandable, maybe you can use this to find some positives and meaning to your situation. If you are more comfortable about it all, then it is easier to tell others. I know, it is easier said than done! It is hard not to feel shortchanged, but you and your values, your core person, your relationships etc still remain, despite your illness. Your friend may be very understanding, who knows what challenges he has faced. Also, if you are to have a friendship of any type, better he knows where you are at - truthfully.

Good luck!

[MightyMouse]

My opinion here--

lots of people say "how are you?" out of reflex...and some genuinely want to know REALLY how you are. Personally, I start by saying I'm okay (as it's usually true), and then take it from there. If I continue writing each other or end up talking on the phone, I start by seeing how much they are revealing about themselves--not everyone wants a close relationship (even if I do).

Some friends can actually handle the exact phrasing you used up top i.e. "I got hit by a mysterious illness..." and you can say it sidetracked your life in ways you didn't expect. If they seem interested, take the open door from them, and give more info.

I try to be careful explaining in simple terms because not everyone can handle the details.

Let us know what you decide--and how your re-acquainted friend and you work things out.

Nina

[DSM3KIDZ]

I agree with Nina.

I know how hard it is to watch the world go by while your sitting still. Hang in there and keep up the hope. I have learned so much from this illness. I now look at myself and life differently. I wish and pray this illness will go away or at least ease up symptom wise but in a sorta weird way it has given me alot of perspective on life. I like the person I have become (mentally not physically) and I wasn't to fond of the controlling self centered person I used to be. I think minus all the extra work my husband has to do around the house he is alot happier now than he was before I was sick.

Basically what I'm saying is you have probally made more strides in your life than any of your classmates who have not been through the storm. Your friend will probally find you to be courageous from all that this illness has to offer us on a daily basis.

Just tell him what you feel comfortable revealing.

To be honest, I avoid all places that I might run into people for fear of the same question. Luckily I moved to the other side of town from where I grew up. So I have yet to be asked that dreaded question.

Dayna

[jenwclark]

I was in a similar situation a few years ago. I got an email from an old high school friend around the time of our tenth reunion. Like you, I responed with a friendly but neutral sort of message. When he wrote back, I'm afraid I wussed out and didn't respond.

Here's my summary of the problem: Disability of any sort tends to be taboo in our culture. Nobody seems to know how to talk about it or how to respond to it. When your disability is something nobody's heard of, there's that extra layer of having to explain it, and possibly facing disbelief.

In my actual experience, at least 9 out of 10 people respond sympathetically. But, of course, the ones I remember are the ones who don't. The social revolutionary in me wants to be open about my disability and the unique strengths I have gained from it. In actual practice, I very seldom do that. I'm afraid of turning into one of those obnoxious people who's always talking about her aches and pains. It seems like that would be easy to do, since there isn't much else going on in my life.

As Nina says, some people want to know more than others when they ask, "how are you?" I, too, start out with a generic, "fine." But lately I've been trying to find ways to ease into a more complete answer. Humor is good. So is a demonstration of your expanding knowledge of medicine, particularly if you can infuse it with a good dose of scientific fascination.

I suddenly occurs to me, I wrote the following message just yesterday to a friend who just got back in touch after a couple of years absence. The tone is representative of this particular friendship, but it's the kind of response I'm trying to give these days:

My primary activity these days is being sick. On the plus side, I finally have a diagnosis. I have Postural Orthostatic Tachycardia Syndrome. Doesn't that just explain everything? The quick summary is: the part of my brain that's supposed to regulate blood pressure, heart rate, and various other important systems doesn't work very well. The result is that I get a head rush every time I stand up, I see stars at least a couple of times a day, and I get tired really quickly when I'm on my feet, or even sitting upright with my feet on the floor. Do you think a recliner would qualify as a deductable medical expense?

[bttrflyamby1981]

I think I agree with Nina as well. I have told friends what's going on with me, and I don't think they were ready to hear it.....at least not so soon. If your going to be spending time with this person they will be able to tell somethings not "well" with you. Take it from there.

Amber

[willows]

I was in this situation last October .

I found my best friend after we lost contact , it took me 35 years in all of searching but I got there .

We arranged to meet for the first time on her 50th birthday , she asked me before hand 'how are you, keeping well I hope ' yep, its a difficult decision to make but as I was going 350 miles to see her she would have to know it all, after all what would happen if I had a 'funny spell ' in front of her and she didn't know what to do ????

I called her a couple of nights beofre I was due to meet her and just explained in as simplest way I could;

I have something called Autonomic Nerve dysfunction..............I can look , talk and even act normal most of the time ( except for my continuous lunacy ) but this condition makes me very ill at other times.

Neither drugs , therapy or 'mind over matter' can control it, There's no cure at this time ,so its a case of putting up with it.

I take lots of drugs throughout the day to help me manage the condition.

I can look very pale when I'm tired and also sweat horrendously if I'm stressed , I dont walk as well as I should , I have problems with my hands and hips and also get fainting sessions.

So if I say I need to sit down , take it from me I do !

If I feel unwell I will tell you , but other than this dont worry I can manged myself.

I also give her a site to look the condition up on if she wished to , but I said dont get worried by what you read, you've seen photo's of me as I am , so I'm not that bad am I ? ( lies!)

My friend was so grateful for me being 'upfront and 100% ( cough -cough) honest with her about it , because as she said after our first meeting in 35 years ;

' as children and students together we always told each other our secrets the problems , fears , hopes, wishes and dreams and it is that special knowledge that we shared about each other thats bonds us like sisters and has kept us close , even after 35 years of not seeing each other '

So close are we I dont even have to tell her when I have a bad day ..............she just knows, even though we are 350 miles from each other still. Be honest , be cool about it and then there is not problem if anytime you meet and your not 100% .

Willows.

[wareagle]

Thanks for the help guys! Well, I decided to do the "I'm fine" response and basically just mentioned that I moved back to the gulf coast a few years ago and since then I've just been taking it easy..which IS true. But then I got another reponse back from him and evidently he now thinks I'm living a care free life here on the coast...OOPS!!

So now I've decided to go ahead and let him know what's "really" been going on. I'll just keep it simple and hopefully he'll understand that although I have this disorder I'm still ME. We've both said we'd like to keep in touch and if I'm going to do that then I'll need to be honest about where I am in life.

I'll let ya'll know how it goes....thanks again for all your advise!!

[wareagle]

Okay..here's an update for those of you following along..

I've been dragging my feet a bit on the whole "coming clean" e-mail. I was even thinking of maybe just letting it all go..but then I got another message from my friend today. So, I just sent him a reply with the whole scoop. I tried to be direct and simple with my explanation...we'll see what happens!

I'll keep you all posted!

Em,

Thanks for your kind words in the other post!! You're so sweet! It is nice to use my education and training every now and then...let's me know my brain's still working.

[DancingLight]

You go girl! I know, it is so hard.

I guess the short of my ramblings on this topic (which I don't have energy for!)...is that I have found my life and friendships to be richer and more beautiful since my illness. However, it's been eight years and a lot of work...early on I did lose a lot of friends. But, those who are still with me, well, they are amazing.

I have also avoided telling people, not knowing how to tell people etc. One reason I started my blog was so that people could 'choose' how much they wanted to know.

I guess in a situation like with this friend who contacted you...you don't have a lot to lose. Either you end up with a renewed and supportive relationship from someone who can 'handle' the sick stuff. Or you basically, are where you were before...ya know?

I guess I have found that for the most part, people really are amazing and have been so supportive. They balance out the ones who are poops. I've flitered out the folks who I can't be 'me' with, b/c it takes too much energy to not be me.

Also, I know you have lots more to you than being sick. My friends adn I talk about so many things--spirituatlity, health stuff, books, movies, tv, whatever!

The other thing that has been beautiful is that my friends have turned to me about their sufferings (post-partum depression, rape, etc) when they felt they didn't have anyone else who they could talk to. I love knowing that I can do this for my friends, b/c there are so many things that I cannot do for them anymore.

One thing that I do a lot of is ask them a LOT of questions about their lives so that we don't get bogged down with all my health stuff all the time. Plus, I like the escapism of hearing about their kids and stuff.

I still hate having to explain to people who don't know yet, or wait to hear how someone will react. I don't know if that will ever get easier.

One thing that I love to remember is that illness or not, I AM STILL ME. That is what Dana Reeve said to Christopher after his accident when he wanted to commit suicide. She said, 'you're still you. and i love you.'

The only thing now for me is that I am homebound and haven't met 'new' friends since getting sick. All of my firends are from before I got sick, so they know that part of me. I worry about when/if I have the opportunity to start meeting knew people and will they want to 'take me on'. Ya know?

Okay, this did get to be a rambling. And it's not at all coherent...as I am really needing a nap. Sorry.

Just wanted to say...you go girl. And I felt every one of your words so clearly...it's soooo hard!

Em

[DancingLight]

hey it's me again!

do you remember when i was trying to decide whether or not to go to my high school reunion or not? i had to practice over and over with my friends what i was going to say to the what do you do question.

i'm so transparent, it's hard for me not to just say what's going on. but, i did kinda joke that i wanted to go into medical research...but just hadn't planned on being the research SUBJECT!

i also said things more vaguely, like, 'i've been dealing with some health issues lately, so am not working right now.' i didn't come right out and say i've been sick for 8 years!

for the most part, i either got a dense answer like 'oh, that's nice' and then figured that was teh end of that conversation.

or, i got genuine and honest concern and interest. and renewed some friendships.

i focus on those folks.

it helps that a lot of my friends are really into medical stuff! i'm like fascinating to some of them. to the others, they want to know and learn and i feel like we have all learned so much from what has happened. sometimes i think it's harder for thme than for me b/c they are scared too and want me to get better. as the years pass and i don't, i think it is hard for them. but, we're all more loving and compassionate b/c of it.

i hope your friend will respond with interest and not be scared away. if he is, it's about him, not you.

i have been pleasantly surprised by the interest people have in staying friends.

i remember one of my friends saying to me that at first she was so scared b/c how would we 'connect' if we couldn't do things togehter. if our whole relationship was just talking. but, we don't seem to have any trouble with that one!

i remember how much your friends love you and how they took you to the beach for your bday...so i know people see more to you than illness.

this is such a big subject for me. i struggle with it every day. how to maintain friendships. how much to disclose. how to deal with folks who don't know. how to shrug off the ones who disbelieve or dismiss. how to let go of those who let me go. how to stay connected to a world that is so different from mine. but, in the end, i've been blessed, so very blessed. by people here, by family, by friends. i've been humbled.

i just finished another christopher reeve book on tape and so he's on my mind. he said sometimes you can achieve so much more by being than by doing...and that is so true. what we can give our friends--the gift of our undivided attention during a phone call or email is grounding for them. we've learned that our friendships are about who we are at the 'core' and not about how successful our career is or what kind of car we have.

i have learned one hard thing, and that is that my friends are so busy with their full lives that i have to be the 'initiator' of emails and phone calls more often that they are. that is hard, but i have to learn to realize it isn't a reflection of how much they love me.

okay, i'm really going on and on here. you just really opened up a big can of worms!!!!! it's a topic that i think about sooooo much!!!!

later alligator!

em

[jenwclark]

I've wrestled with the friendship question a lot, both how to keep them and how to make them. I have sometimes felt that I didn't have much to offer. I can't give somebody a ride to the airport, or take soup to someone who's sick, or any of those nice little things friends do.

And making small talk is a challenge. I've been in school part time for most of the last 10 years, so I've had that answer to, "what do you do?" -- I just don't mention that I'm only taking one class. Now that I'm completely out of school, it gets more awkward. Sometimes I luck out. At one party at my sister's house, I ended up having a long conversation with one person who had long-term health problems and another whose significant other had the same. One of the plusses is that when you meet someone who understands, you have an instant bond.

With my close friends, I finally learned that I do have something unique to offer. My health problems have forced me to slow down and pay more attention to life. I have spent a lot of time inside my own head, and what I've learned about myself helps me understand other people, too. My friends know that I'm a good person to talk to when they're trying to sort something out.

But I'm not sure friendship has to be an even trade. I think I get more hung up on that than they do. I've got friends who just take it for granted that they'll probably have to pick me up when we get together. I've got an Asian friend down the hall who enjoys the challenge of making gluten free food, and she'll just show up on my doorstep with a bowl of soup, or, if I'm really lucky, tiramisu with rice flour ladyfingers. Last December I was having a really rough time, and I called my sister to ask her to come help me get things under control. She lives 8 hours away, and she got in the car and drove out here the next day. None of these people have given me any reason to think they resent me; in fact, they admire and appreciate me.

Am I lucky, or what?

[DancingLight]

QS,

You wrote so eloquently what I was trying to say in a major brain fog!

I have had experiences like you...and I think we often think that others have it 'easy' or everything is going well for them, until we really ask and find out that everyone suffers in life in their own ways.

I agree about having had a lot of time to think things through, etc. and also to really truly be present for my friends. When they come to visit they are like, this is wonderful...it is such a break from the craziness of life. No matter that they have to take care of the house and me, they don't care! They still love to come here and think it is relaxing. It cracks me up.

I loved your stories of kindness. And that food delivered to you sounds so good!

I, like you, have the pang of sadness when I can't bring someone else food or give them a ride! But, I CAN (most of the time, although I am often too sick to even talk on the phone) give my friends undivided attention and emotional support.

I am glad you blessed with such great folks in your life too.

You are right about the even trade thing...but I think in the end if they are true friends it does even out. Yes, my friends adapt to my schedule and always have to come here, but I also try to give to them something from me. It doesn't have to be perfect, but I used to be in relationships where there wasn't much mutuality, and with being sick I can't always be the giver. It's very hard though to feel like I am most often the receiver! Ugh!

Emily

[jenwclark]

You are right about the even trade thing...but I think in the end if they are true friends it does even out. Yes, my friends adapt to my schedule and always have to come here, but I also try to give to them something from me. It doesn't have to be perfect, but I used to be in relationships where there wasn't much mutuality, and with being sick I can't always be the giver. It's very hard though to feel like I am most often the receiver! Ugh!

Emily

I think that graciously accepting help is a gift. In Judaism, isn't it a gift to give someone the opportunity to perform a mitzvah? Even if I'm asking for help from a stranger, like in a store or library or something, I find that people respond positively, even enthusiastically, when I come in with a smile. Your friends would probably enjoy helping you even if you couldn't offer them emotional support in return. (Notice I'm not saying "MY friends would enjoy helping ME". It's amazing how much easier it is to see how all this applies to someone else.)

I think you're right, though, that between good friends things even out in the long run. There's no way to keep score, anyway, because we probably don't realize half of what we're giving and getting. I just always feel more secure if I think I'm erring on the side of giving too much instead of taking too much. That's been a difficult adjustment for me, too.

Ok, I've run out of coherent thoughts now.

Spike

[DancingLight]

Spike!

Are you Jewish too??? Or did you just pick up from my posts that I am Jewish.

So, the mitvah thing! I had to reply! Thank you for reminding me of that.

I did read something or hear something ages ago that I had forgotten about. It talked about a woman who had become disabled and was in a wheelchair...

Her husband called her a 'Rolling Mitvah' and looked at it the same way you said...that people WANT to help, and she gave them the opportunity to help. I know that is true on an intellectual level...but like you said, we want to be the givers.

I really needed that reminder. Thank you!

Em

Oh shoot, but we're supposed to PERFORM mitvahs too, not just give others the opportunity to perform them on us. Hmmmm....food for thought.

One of my favorite movies though is Pay it Forward, I think it's such a good way to think of giving and receiving.

Okay, time for dinner.

Later alligator!

Em

[jenwclark]

Emily,

I love the idea of the "rolling mitzvah"!

No, I'm not Jewish; I'm a Quaker. I forget where I learned about mitzvahs, but I'm happy I could provide a reminder.

It's awfully nice to know other people are thinking about this stuff.

Spike

[DancingLight]

QS,

I have really enjoyed this conversation with you!

I think about this stuff all of the time! Spirituality and finding my way with it in life dominates my way of operating.

When you have to stop 'doing' and learn to 'be'...and have all of the stuff stripped away from you and can do nothing but lie in bed and be sick...it gives you pause! What's the meaning of this? What's the meaning of life? How do I make my life of value? How do I give with so little energy? My spiritual growth (which was virtually non-existent before my illness has helped me so much).

This is so cheesy, but I saw this zen guy on Oprah years ago and he worked with people who were dying. He said what ended up being important wasn't things like I wish I had worked harder or whatever, it was this: 'Am I loved? Did I love well?' This is how I frame my life. Have I fliled my life with love--both giving and receiving. Don't know if I'm succeeding, but I'm trying. And I am human. I still covet, get angry, have trouble forgiving, etc. etc. etc.!

I went to a Friends School for two years (2nd and 3rd grade). It was a most amazing and life changing experience. The values I learned there have influenced me so greatly. I LOVED it!

I'm actually sort of interested in learning more about Quakerism...they have a wonderful community in our town.

Oh, and I HAVE made friends since I got sick...my friends from DINET!!!! I got teased for not noting that! Oops!

Goodnight!

Emily

[wareagle]

Okay guys...I heard back from my friend and I think that everything is going to work out just fine. He was surprised to hear about the turn my life has taken but he wasn't "freaked out" about it. I think / hope that we'll be able to rekindle our friendship...as much as it can be with us living in different states..etc.

It's really strange to revisit that time in my life...high school...wow...it's amazing how much we grow and change throughout our lives. I remember thinking at the age of 18 that I knew who I was...now I barely recognize that person!! And I mean that in a good way!

[jenwclark]

Yay! Congratulations on taking the plunge, and I'm glad your courage has been rewarded.

Spike

[jenwclark]

Emily,

I've been enjoying this chat, too!

Your comment about "being" instead of "doing" made me think of an interview I heard several months ago with a woman who grew up in the civil rights movement, going to meetings with her parents. She said she was raised that the most important thing was to BE someone real, and that being that person might lead you to DO something important, and doing something might let you HAVE something you want. She made the point that these days we've turned that around. People tend to think you have to HAVE something to be able to DO something, and you have to DO something to BE someone.

I'd be happy to talk to you about Quakerism, mitzvahs, "being", and all this other stuff anytime. (At least, whenever my brain is sufficiently functional.) Feel free to PM me, if you like.

Spike

[DancingLight]

Spike,

BEAUTIFUL!!! (I think I am in an extra pensive mood b/c the high holidays have just rolled by).

I saw a spiritual counselor for a bit while I could still get out of the house a little and he taught me about my 'essence' and it was the first time I 'got' that people love me for my essence, not for what I do, or have, like you said.

I may take you up on your offer...but right now I'm pretty limited on email energy! Thank you so much!

Wareagle!!!

YEAH! YOU GO GIRL!

I am so glad it was a positive response from your friend.

Funny you said how will it work since you are states apart. All of my friendships are almost solely based on email and phone b/c my high school friends have moved away, my college friends are all over the place, and my DINET friends too. The only time I see my friends is for short visits--if they are townies and in town to visit their parents, or if they are college friends who make a special trek here to see me. I sometimes wonder if they'd love me as much if they had to see me on a more regular basis!!!! hahaha (you know, when they have to see the dark side of dancinglight!)

Later alligators!

Gotta go watch Grey's Anatomy!

Em

[becky]

Hi wareagle,

i just wanted to say that i thought it was really brave of you to tell your friend the truth about your disability, i know how you feel about not asking for pots.

i lost most of my friends when i got pots, i got so tired of their "mind over matter" attitude, they didn't have the illness i did and i know that at the time i didn't have a diagnosis but it made me feel like they didn't believe me, so i stopped seeing people and they stopped calling me.

i have now moved to yorkshire with my boyfriend and my best friend from Chester has moved up here aswell. I thought that this was a really good thing because carrie has known me since i got sick so she's bound to understand everything, right? wrong!

I was doing some temp work for carrie at the freshers fair at leeds university (my first time working in three years, yeah!!) but carrie seemed to think that because i was working i wasn't sick any more, she kept asking me to do things that i'd told her that i wouldn't be able to do before i started - like standing up handing out flyers for hours? Then in the office i felt like she was showing off to her colleague by making fun of my illness and all the things that i can't do.

I felt really stupid and really really hurt when she said to her colleague, whilst i was there that if she were me she'd have probably just shot herself!

i Haven't seen her or spoken to her since, i need to calm down first, i don't really think that this is the kind of person i want as a friend.

so i'm on the lookout for new - more understanding friends. On the really plus side though, i'm feeling much better now and i'm off to the job centre next week to get a job and back into the land of the living, kind of!!

good luck

becks x x x

[jenwclark]

Becky,

I'm so sorry about your experience with your friend. I can see why you would be rethinking the friendship. I would be, too. One thing to bear in mind -- if there are other things about this friend that make you want to keep her in your life, it may be worth talking to her about how her behavior affected you.

One of my dearest friends sometimes gives me the 'mind over matter' attitude, and I was starting to feel like I just couldn't talk to her about my health. Since there isn't much else going on in my life right now, that would have been a problem. When I brought this up with her and told her it sometimes felt like she didn't believe I was sick, she actually burst into tears. She told me that she sometimes feels that disbelief kicking in because she doesn't WANT me to be sick. She really does believe in me, she just wishes my life wasn't so difficult. Now that I know that, I can work around it, and maybe remind her that pretending it's not real doesn't help.

That said, I have lost some friends over the time I've been sick, and every one hurts. I hope you find some good new ones.

Spike

Em,

I may take you up on your offer...but right now I'm pretty limited on email energy! Thank you so much!

That, I totally understand. Take care of yourself, and happy (very belated) new year.

Spike