I guess you could say that I’m back in the dating saddle, which is both a good and bad thing. It’s definitely good that I’m moving on from my past relationships – especially the one I posted about – but it’s very overwhelming to me because lupus and rheumatoid arthritis are always lurking in a dark corner, waiting to throw a kink into things.
So when you start dating someone, when is it okay to drop the “sick bomb”?
My first inclination is the sooner the better, so if someone wants to run the other way, they can before either one of us gets too attached. But because so few relationships seem to make it past the first date, maybe it’s best to wait it out. Then I got to thinking that maybe the third date is best. If you’ve gone past one and two, you’re getting somewhere. Definitely time to come clean. So in other words, I don’t know. I’m feeling very conflicted at the moment.
Mainly because this conversation gives me nightmares. I imagine it going something like this (even though I’ve really had it, and this is pretty much how it goes):
ME: There’s something I need to talk to you about, and I’m not sure how you are going to feel about what I have to say.
THE GUY: Trying to be cute, says, “Are you seeing someone else? Did you used to be a man?”
ME: No, nothing like that. (This is potentially worse)
THE GUY: Whew!
ME: I’m sick. I have lupus and rheumatoid arthritis – followed by a very laymen explanation of illnesses – and while these illnesses effect my life to varying degrees at varying times, I thought you should know so that you can make the decision to get out while you can, if you don’t think this is something you can or want to deal with.
In my last three relationships, I blew the third date rule in waiting to have this conversation. The first and third because we were quickly getting to know each other, so I disclosed prior to the first date, and the other because we had known each other for a long time before we got together, and he already knew I was sick when we started seeing each other. And maybe that’s why it was so easy for me to fall into a relationship with this person, because he already knew I was sick.
I think as much as we would all like to have faith in people and give them the benefit of the doubt, we have to be realistic about the fact that illness is a definite deal breaker, or at least it feels that way to me. And I would hate to see illness get in the way of what could otherwise be a good relationship, but I have seen relationships end over much less, so I guess that’s how it goes.
I am convinced now that the third date rule – which I came up with – really doesn’t work, if the relationship gets to that point. Men these days are relentless. Everyone wants to be your facebook friend, and text and tweet you (get your mind out of the gutter…or maybe not…), and get to know you better by not really getting to know you. And because of this “let’s be facebook friends first” mentality, guys are actually getting access to a surprising amount of information very early on (even before the first date). This is the first time that I’ve considered my blog to be a liability…
But the truth is, I’m not going to censor myself. Lupus and rheumatoid arthritis are a fact of my life. And I guess with the right person, these illnesses won’t be all of who I am. They are only a small part of me. And the right person will be able to strike a balance between the two. Or they won’t be the right person, and they’ll walk away. I guess that is a risk I have to take.
Maybe this post sounds rather doom and gloom, but I’m not convinced that this conversation goes well most of the time. In fact, I think this conversation going well is the exception and not the rule. As tough as many guys claim to be, I’m not optimistic that many of them can (or want to) deal with something like this. Although I’m learning that some can, it doesn’t mean the relationship is going to work out.
Because in most cases, the “in sickness and in health” bit is hypothetical. But in a way, too, is the above conversation. I could go into remission tomorrow. My illnesses could stay the way they are for the next 20 years. Or not. But the truth is, I don’t know… And that’s why I have to be honest and upfront, no matter how much it pains me to do so…
One casualty of illness is that I worry that I am too quick to glom on to guys who are willing to wear the illness hat, or at least try it on for size. It’s easy to see that person as being Mr. Right, even when they’re not even Mr. Good Enough, not even close. The problem is, though, that this acceptance is going to be a huge piece of the puzzle. So it’s easy to get seduced by the idea that someone is okay with the “idea” of my baggage. Because no one that I’ve been with has actually experienced a flare first hand, oddly enough.
I have to wonder, in a very Carrie Bradshaw kind of way: Has illness acceptance become a proxy for chemistry? Has “this is who I am, take all of me” literally come to mean “take all of me”?
I’m curious to know from a male perspective: When would you want to know about health issues like this, and how would you best like the conversation to be framed? Or do you trust the person you’re with to know how and when the right way to tell you is?
And from an illness perspective: What are your rules about this type of thing? And do they work or not?
(Oh yeah, and my super, hot pink medical bracelet? Can’t exactly sport that on a first date…)
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Tuesday, November 24, 2009
Tuesday, November 17, 2009
“The Etiquette Of Illness”
I read this great little book, “The Etiquette of Illness,” by Susan Halpern. This book offers advice, but isn’t preachy. And some books are just written in a way that is soothing to read – this is one of them. (Thanks to the recommendation from Rheumatoid Arthritis Guy)
“It is the role of the ‘well person’ to reach out. While it can be hard to initiate contact, doing so brings pleasure and solace to both parties” (3).
Lately I’ve been thinking a lot about what I need from people. I’ve been having a hard time dealing with a lot of things in my life, and have really had to explore the relationships I have with others. I’ve realized that while a lot of people have not done a very good job of dealing with my health issues, I haven’t either, mainly because I haven’t known what to ask for, or even how to ask for help. In order to ask for help, you need to know what you need. And that’s a hard thing to do if you don’t really like having to ask for help.
I’m learning that I have to assert myself more, because if I don’t look after myself and my health, no one else will.
“Find the words that give you comfort and teach your friends to say them […] Given the sensitivity around what to do and say, unless the person who is ill speaks out loud with specificity and care about what pleases him or her, no one will ever know” (30, 223).
For me, there’s always the battle between the person that I am and the person I want to be. If it were up to me, I wouldn’t need help, and I wouldn’t be struggling to cope, and I wouldn’t be sick.
But that’s not reality. So the people that I want in the inner circle are the ones who really want to be there (this is, I think, what Halpern calls “the inner sanctum” (234)). The one thing in my life that I refuse to tolerate is disingenuousness and fakeness. If I put time and effort into a relationship, I want it to be real, and mutual.
“Opening the heart as a receiver of love and care makes exchange equal. It is not all one person giving, one receiving. It is the reciprocity of giving and receiving that gives rise to joy” (234).
It’s sad, but some people, whether they’d like to be able to or not, are incapable of giving of themselves unselfishly. What I’ve realized is that help has to come from a place of mutual understanding. And it also has to be unselfish on the other person’s part. It doesn’t really count if they are only offering help because they have ulterior motives or expect something in return.
“It is the role of the ‘well person’ to reach out. While it can be hard to initiate contact, doing so brings pleasure and solace to both parties” (3).
Lately I’ve been thinking a lot about what I need from people. I’ve been having a hard time dealing with a lot of things in my life, and have really had to explore the relationships I have with others. I’ve realized that while a lot of people have not done a very good job of dealing with my health issues, I haven’t either, mainly because I haven’t known what to ask for, or even how to ask for help. In order to ask for help, you need to know what you need. And that’s a hard thing to do if you don’t really like having to ask for help.
I’m learning that I have to assert myself more, because if I don’t look after myself and my health, no one else will.
“Find the words that give you comfort and teach your friends to say them […] Given the sensitivity around what to do and say, unless the person who is ill speaks out loud with specificity and care about what pleases him or her, no one will ever know” (30, 223).
For me, there’s always the battle between the person that I am and the person I want to be. If it were up to me, I wouldn’t need help, and I wouldn’t be struggling to cope, and I wouldn’t be sick.
But that’s not reality. So the people that I want in the inner circle are the ones who really want to be there (this is, I think, what Halpern calls “the inner sanctum” (234)). The one thing in my life that I refuse to tolerate is disingenuousness and fakeness. If I put time and effort into a relationship, I want it to be real, and mutual.
“Opening the heart as a receiver of love and care makes exchange equal. It is not all one person giving, one receiving. It is the reciprocity of giving and receiving that gives rise to joy” (234).
It’s sad, but some people, whether they’d like to be able to or not, are incapable of giving of themselves unselfishly. What I’ve realized is that help has to come from a place of mutual understanding. And it also has to be unselfish on the other person’s part. It doesn’t really count if they are only offering help because they have ulterior motives or expect something in return.
“Compassion occurs when we open our feelings to the feelings of another person, without judgment, pity, or a need to fix” (219).
I’ve realized that whenever anyone asks me how I am, I’ve gotten very used to saying “good” or “fine.” Not that I want everyone knowing exactly how I’m feeling, I also realize that such vague generalities do no one any real good.
For me, a major “path of least resistance” is being a “yes” woman, even when saying yes comes at the expense of my health.
I was supposed to go to Yale at the end of September to present at a conference for a professor I do work for. The way the trip ended up being, I would have been in New Haven for 30 hours, and taken a total of six flights to get there and back. If that doesn’t spell F-L-A-R-E for me, I don’t know what does. Ultimately, I begged out of the trip a month shy of going, which is not something I would normally do. But I knew that it would be bad for me, and had the potential to derail the semester (which has turned out not to be a very good one, as it is). It was an expensive lesson to learn. But it was an important one. (And the world didn’t end because I didn’t go to this conference, shocking, I know)
“A little response to chronic illness goes a long way” (129).
I think what I’ve come to realize is that you have to let those in who want to be. Now, you don’t want to rely on people so much that they become tired and worn out. But you also don’t want to stare a gift horse in the mouth. For me, being there mostly means that I can call and laugh or cry with someone. It doesn’t mean being on guard 24-7, waiting for me to call or e-mail. But it means being there when I’m really having a hard time of it.
I’m the first one to admit that this is a forever thing. And it sucks. But it is what it is. And, for better or for worse, illness doesn’t just impact the sick person. Whether we know it or not, it impacts everyone that we come in contact with.
One day, I was flaring badly. And “a certain person in my life” picked up the phone and called me. Only my parents had really done that. It meant so much, and yet, my first thought was why. Why was this person doing this? And shortly after, I sent this person a message saying something to the effect of I don’t want you to know me like this.
We’re all afraid of something. And to be so open and vulnerable to someone, to let them see you at your worst, isn’t an easy thing to do. And when actions aren’t met with the desired response, at least for me, I immediately retreat and go inward again, opening myself up to others less and less. There seems to me to be a fine balance between what is and isn’t enough and what is too much.
Lately I’ve had several people make offers of help, and follow up by telling me that they really mean it. It’s interesting that these have all been fellow people dealing with illness. And like I said, I think this is the key. The offers have to come from a place of true compassion. And even if I say no, it doesn’t mean I don’t appreciate the gesture. In fact, I may appreciate the offer more than the action itself. It’s nice to know that there are people who truly do care.
And if someone calls and you don’t feel like talking, I think that’s perfectly okay. I know that when I’m in a bad flare, and I feel like I can bend steel with my teeth, I can be kind of cranky. So that is probably a time when I might say, “I really appreciate your calling, but can we talk another time?” I think whoever is on the other end of the line should understand.
I think this may be the book’s best piece of advice to those who are a part of a sick person’s life:
“Don’t let the loving, lusting, adorable side of your friend disappear” (13).
Recently, a friend responded to something I posted on facebook that the “old Leslie” never would have done something like that. And she’s right. And it’s nice to know that certain people know me that well. That’s all I want. No matter how down and depressed (or sick) I get, I hope that those in my life can always help connect me and bring me back to myself; and can bring out other parts of me than the sick persona. Because, you know, on occasion, I can be a pretty fun person. I’d hate for illness to kill all of my good parts.
“Expressing feelings of gratitude does not make us weak; it may make us stronger […] There is something in the saying yes that carries with it a helpless feeling” (28, 47).
I would like to say thank you to those people in my life who have been there, through laughter and tears, those who have let me tell them that I’m having a bad day pain-wise, etc. Sometimes it’s easy to not consider help, help. To let people do things that seem totally appropriate for the relationship you have, it’s easy to pass it off and not say thank you. Some people may respond, “That’s what friends are for,” or “That’s what I’m here for.” But saying thank you shows those people how much you care and appreciate them in return for all they do for you.
And I’m sure, that inevitably, as my illnesses evolve and change, what I need from others will change, as well…
*****
(Halpern, Susan. The Etiquette of Illness. New York: Bloomsbury, 2004).
Monday, November 9, 2009
“A Dream Is A Wish Your Heart Makes”???
“I’m sorry I can’t help you, I cannot keep you safe
I’m sorry I can’t help myself, so don’t look at me that way
we can’t fight gravity on a planet that insists
that love is like falling
and falling is like this”
- “Falling Feels Like This,” Ani DiFranco
If this is what Walt Disney meant, he certainly had a messed up sense of humor…
I had originally intended this post to be about a rather disturbing dream/nightmare that I had come to have quite regularly. The gist of the dream is that I need a kidney transplant and there is a certain person in my life who appears to be the only match in the whole world. The most distressing part of the dream is that it never gets resolved. I never know the choice the person makes. I haven’t had this dream recently, which is good, as unfortunately, the person that the dream centered around is no longer in my life.
This is the mother of all posts. It’s one that I’ve been trying to get down on paper literally for months now. I have struggled, time and again, about how to write about the personal stuff that has been going on in my life. This is one of those posts that I’ve sat and cried while writing, every time I’ve come back to it. At one point, this post was ten pages long. But neither I nor you nor he needed to be subjected to that. (I even have a word document labeled “Director’s Cut,” with all the fodder that didn’t make it here)…
I’ve realized that while I may have briefly alluded to the relationship, I’ve never “officially” talked about it. I think at the time this was because I didn’t want to announce anything to the “world” until I knew it was a sure thing, which in the end, it wasn’t. And I also wanted to respect this other person’s need to keep things relatively quiet. But in an effort to move on, I’m breaking the silence. This is my magnum opus, my Declaration of Independence (or my attempt at it).
I went to see him on Memorial Day weekend so I’d have place to stay. And I got so much more than that. I never expected to fall in love. It definitely ranks in the top five best weekends of my life. And there was a sea change, and everyone noticed it. But in the end, this certainly wasn’t the fairy tale romance that I’d hoped it would be, though it certainly was something. And it gave me hope, for a time, that things could be better. In fact, that things could be great. I remember that one month, that we were the most connected, both physically and emotionally, no matter what, I couldn’t stop smiling. And I felt like such an idiot. This person even told me that my happiness made me more beautiful. I wanted to be happy for him. And I wanted to be happy for myself.
But all good things must come to an end, and with a crashing halt, they did. And I felt like my world ended for a minute, like it had been made infinitely smaller in a single moment. And it also made me wonder – did I feel this bad when I was diagnosed with lupus and rheumatoid arthritis? But the two aren’t comparable. The world feels different, though, different in ways that maybe only I recognize. Because I whole hog opened myself up to the possibility of something and someone other than myself.
In some ways, the relationship, however short lived, put a lot of questions to rest. Five years of subtext and stolen glances were gone in the blink of an eye. And at the time, it felt right. More than right, it felt good. I guess in some ways, the experience was a gift in that I had only ever viewed this person as a fantasy, but never in a million years would I have imagined we could have gotten together in reality. And I guess we got each other out of our systems. Or at least he got me out of his...
The first night we spent together, we slept together, but we didn’t “sleep” together. It was one of the most intimate moments of my life. I can’t even explain it. I just know that I felt safe and wanted. And for the first time in a long time, I wasn’t worried about the possibility that the world would come crashing down around me in the morning. I felt like the difficulties in my life were worth facing head on because there was someone there who cared about them, too, not because he had to, but because he wanted to (or maybe because I wanted him to).
I know the exact moment that I fell in love with him – and I’ve never even shared this with him. It was when he was sitting on the couch next to me, staring at me like a drunken puppy dog. And despite everything, he was still looking at me that way. In that moment, I felt like he really saw me, got me, in a way that no one else did. And it was in the way that he kissed me goodbye after our first weekend together. It was the kind of kiss that was tender and gentle, but sure and commanding. It could have stopped time, and I think, for a minute, it did. Having to leave and walk away from that was hard, but it wasn’t the end. That has been much more difficult and much less sure. I guess I was supposed to walk away without having felt anything. And he was hoping to fix me in a way that’s simply not possible. I don’t think he had ever thought past the present moment, and what my life would be like without him in it. And as soon as I got visibly attached, he pulled away…
When someone tells you the things they know you need to hear because they know you need to hear them, are they really being sincere?
And I have to ask myself: how many tears can you cry over someone who isn’t crying over you?
There were private jokes, and some of the hard conversations were easy to have. I learned more about him in two days than I had learned in five years. And there was more that I wanted to know. There was a profound feeling of happiness and contentment that I have never felt before. But as good as things were for a time, we also knew exactly what to say to hurt each other. And we both succeeded in doing that, as well. I’m happy that this person is happy, and has found someone that he is happy with. But I also had hoped that we could be happy… together…
I’m grateful to have been shown that happiness and life lurk somewhere deep inside of me, waiting for a chance to escape. But that’s gone now. And I don’t know if I’ll ever get it back.
Maybe the truth is that, that person never existed outside of my own imagination. Maybe I saw what I did because it is what I wanted to see. I don’t want to believe that, but I really don’t know what to believe anymore. It’s hard to move on, even when the other person has in very obvious ways. It doesn’t make it any easier. I think we were both guilty of seeing what we wanted to see, of seeing in the other person a person that didn’t completely exist in reality.
And maybe this is truly the way things are supposed to be. Maybe we are on different pages of the same book. Two people who deeply care about each other, but nothing more… Or perhaps we are two different books from completely different genres, whose stories happened to collide in a verbal stew both beautiful and grotesque.
Illness, and life in general, are like this too. There’s a lot of physical and emotional pain that comes with illness. But there is also a lot of wisdom. And we wouldn’t be people, and we wouldn’t really be living, if there weren’t both good and bad parts. It’s just that some of the bad things take longer to accept than others.
Ultimately, I don’t want a “partner in despair.” And no matter how I was feeling, he managed to make me laugh, and it was the silliest things that brought on these moments of connection, moments that were never had with anyone else. But then there’s the idea that I am permanently flawed in a way that I’m not sure either one of us will ever truly be able to get past. And that’s my fault as much as it is his. I want someone who looks at me and doesn’t think I need fixing.
“I never thought I could love anyone but myself
Now I know I can’t love anyone but you
Now I know I can’t love anyone but you
You make me think that maybe I won’t die alone
Maybe I won’t die alone
What have I become?
What have I become?
Something soft and really quite dumb
’Cuz I’ve fallen, oh, ‘cuz I’ve fall-fallen, oh ‘cuz I’ve fall-fall-fallen
So far away from the place where I started from”
- “Die Alone,” Ingrid Michaelson
*****
“[…] I never thought that I
Had any more to give
You’re pushing me so far
Here I am without you […]”
Here I am without you […]”
- “Love Remains The Same,” Gavin Rossdale
And while he was there in spirit, we were never together when I was flaring. And there’s a part of me that wonders if he would have been able to handle that. I have to believe that the relationship didn’t end over illness. And maybe it’s good that it ended when it did so that he never had the opportunity to end it for that reason.
It’s funny because in my relationship prior to him, I found myself flaring all the time. And that was a pretty clear signal to me that, that relationship wasn’t going to work. But I don’t think he ever caused me to flare. And I think that’s something that worried him a lot. If we fought, and I went into an emotional tailspin, would I flare? And if I did, would he be responsible for it?
Maybe the truth is that the first love brings with it the greatest hurt. Because when it’s gone and you know it’s over, there’s no way of getting it back. It’s something that can’t be undone. And it’s especially hard when the other person doesn’t love you back. They say they care about you deeply, but it’s not love. And they don’t think it ever could be…
Why does it feel so bad to want to be a part of someone’s life who will never be who and what you need them to be?
It is in this moment that all of my illness related insecurities come to bare. I don’t think I can handle dealing with this shit by myself forever. And I worry that I’ll have to and I won’t be strong enough to do it. I don’t want to be 40 or 50 years old and have my parents be the ones that are there. I want a person, my person. Someone who thinks I’m worth fighting for, despite the baggage I bring to the table. I can’t look at what my parents and friends have done for me and push it aside. Because they have really come to help and support me. And yet, the one person I most want to be there isn’t, not even in spirit, and I don’t know if he ever was. And this is the part that hurts the most; the want, the longing, the unfulfilled need. The feeling of having been empty and now feeling emptier.
What I realize now, is that I deserve someone to be that person for me, as I will be for them. But I don’t want to mold someone to fit that role because I need them to. They have to want to. When I meet the person that I’m supposed to be with, I’m going to be all in, I’m going to put all of myself into that relationship, because that’s something that not even illness can take away. And I don’t just want this for me. I want to be that person for someone, too, because I know I can be. Because I feel like I have so much love to give. And I would have given it to him, if he would have let me.
Maybe this would all be easier if this was some guy I had met off the street. If there wasn’t the history of knowing him for five years, of doing an on again, off again dance for nearly a year, and for being together for several months. Because what I miss the most is knowing that he’s there, even when he’s not, and not having to be ashamed of calling or e-mailing when I need/want to.
There are a lot of things I miss. I miss his number popping up on my caller ID. But mostly, I miss the feeling that I am not alone in my struggle for survival; the feeling of someone else caring, someone who doesn’t have to care, makes it all seem worth the physical and emotional pain of being sick. It’s ironic because some days, lupus feels easy compared to this. It’s much easier to harbor anger at an invisible foe that you may never truly know than at a real person.
And it truly pains me to say that there is something that has hurt and damaged me more than illness has. Because unintentional hurt can be the worst kind. He thought what he was doing was the right thing to do. My life wasn’t going well and he “felt bad for me.” And I thought that my actions and feelings were right, too. So were we both wrong?
The truth is, the healthy me probably never would have taken a chance on him. I probably never would have opened myself up to the possibility of him and I. But the drawback of risk taking is that when the risks don’t pan out, it hurts worse than before. Because illness magnifies everything. The slights hurt more, but the good feels better than it did before.
He says I can still share things with him without him judging me. But wasn’t rejecting me as a romantic partner the ultimate judgment?
I really thought things could work with him. He is strong in places I’m weak, and I think I’m strong in some places where he is weak. He’s emotionally closed and I’m emotionally expressive. Maybe it never would have been enough for me. I can’t apologize for feeling too much, just as he can’t apologize for feeling too little.
A lot of people said they thought it would be more than it ended up being. And a lot of people said that he was only capable of hurting me. I don’t know if they were able to see beyond the significant age difference between him and I. I guess I was hoping that he would prove everyone wrong.
Do I wish I was still with this person? In some ways, yes. Do I wish I wasn’t sick? Yes. But these “yeses” are non-issues, because they are things that can never be, no matter how much I wish they could be. So, just as I’m never going to be romantically involved with this person again, I’m never going to be “healthy”. And that’s a reality that I have to own up to.
Lately, I feel like I’m undone, coming apart at the seams. I feel like at any minute the final blow will be hurled at me and that will be that. It will all be over. I won’t have the strength to go on. And right now that’s how I feel. I’d like to think that I won’t always feel as bad as I do right now, but there’s no sense that this is going to get easier. And I know it only seeks to negatively impact my future relationships, so if for no other reason than my own sanity, I need to move on. And everyone, including this person, has told me that I do. And it’s easy for him to tell me to move on. He’s the one who dumped me for someone else, not the other way around. So, this post is a large attempt in an effort to do just that.
Just as there are some things that illness can’t kill, there are some things that even failed relationships can’t take away. Like learning that I have the capacity to really love someone else, even if they don’t love me in return. And even when their spurning causes me some of the greatest hurt I have ever known, I am still able to love him as a person…
I’m the kind of person who feels like I need tangible memories for something to be real. But the truth is, what I have is the most tangible thing of all. What I take with me is the person that I am today, a person whose life has been shaped, in some ways, by someone else. I took a flying leap when I decided to let this person into my life as more than a friend. And ultimately, it didn’t work out. But that doesn’t mean I’m left with nothing. What I realize now is that I may have been alone before, but I’m not alone now. Even if this person is out of my life (at least romantically), there are parts of them that I will take with me. If I hadn’t had this experience, I wouldn’t have anything to take with me. And that’s something, no matter how you look at it. For better or for worse, we are impacted by those who are a part of our lives, even if for only a short time. I guess all I want is to know that I meant something in his life, because he knows that in a profound way, he meant something in mine. (And in case you were wondering, this person did read this post prior to my posting it...)
This is both the beginning and the end. Sometimes the cure is worse than the disease…
“Now don’t forget me
Please don’t forget me
Make is easy on me just for a little while
You know I think about you
I hope you’ll think about me too
When we’re older a little slower it doesn’t matter now come on get happy
’cause nothing lasts forever but I will always love you”
- “Don’t Forget Me,” Macy Gray
Monday, November 2, 2009
Can Our Doctors Trust Us?
Many of my posts as of late have been colored by my experience of being hospitalized. So you’re probably thinking, wow, she spent three days in the hospital and is suddenly pro-doctor? Not quite…
But I will say that all of the doctors I encountered in the hospital were very nice, and I do feel as if I received a high quality of care. But it got me thinking about the fact that, in some ways, the doctor is only as good as the patient, and the doctor-patient relationship needs to be a partnership (of equals, in the best case scenario).
As I’ve started to get my medical info organized – my original binder is inches thick full of medical records and is no longer practical – I’ve realized that without having much information with me, I’m not sure that my reports to doctors could have been trusted 100%, or that the story was reported consistently and identically to every doctor I encountered (and there were many of them).
This is not to say that I purposefully lied to doctors, which I didn’t. But coming into the ER with a fever, being alone and nervous, and then being pumped with high doses of antibiotics, was my word really worth the weight it was given?
Now don’t get me wrong. I’m the patient and I know my situation the best, but in the absence of something concrete to give to doctors, how do I, or they, know that they have all of the information they need in order to give me the best care?
As an example, the longer I was in the hospital, the foggier the timeline became from receiving the pneumonia shot on Friday morning to ending up in the ER on Sunday afternoon. And this is reflected in the story that is outlined in the copy of the records I was given of my hospital stay. Reading it now, I think, well, that’s not exactly how it happened…Close enough, maybe, but not perfect…
And accuracy will become increasingly important the more complicated my medical history becomes, which it undoubtedly will.
And I say this even when I have my parents listed under ICE (“in case of an emergency”) in my cell phone, and I have a note in the ICE that says to check for the medication list in my wallet.
We, or at least I, have a tendency to put the responsibility squarely in the lap of my doctors. They are, after all, the “experts.” But I’m realizing more and more that it is increasingly important for the patient to be an expert, too. This can be difficult when you don’t know how your body will react to certain things, but being the arbiter of the most information possible means that there’s less of a likelihood that you will slip on things, and therefore, less of a likelihood that your doctors will (especially in the case of being in the hospital and seeing mainly doctors that you are not familiar with and who are not familiar with you).
So aside from trying to put a manageable binder together of my most relevant medical information, I also took the plunge and purchased a medical alert bracelet. I had been avoiding such a purchase because a) they can be relatively pricey, so it is somewhat of an investment, and b) it actually means admitting for real that I am sick.
But this purchase is an investment in my health and my life. It covers my butt in the event that I cannot speak for myself and need medical treatment. One thing that has been stuck in the back of my mind is what if something happened to me while I was teaching? While I would hope that as college students, my students would at least have the presence of mind to call 911, that’s the most I could expect from them. And in the event that I end up in a situation where there is no one around to speak for me who knows my health issues, I need something that will speak for itself.
The bracelet I purchased is Velcro. It came with a little waterproof strip that you can write your name, medications, doctors, and important phone numbers on. The strip fits into a pocket on the inside of the bracelet, which can easily be pulled out if necessary. Plus, it’s pink. Need I say more?
I purchased the bracelet from Lauren’s Hope*. This website has many different versions of medical alert bracelets, many of which are made to look like everyday jewelry. While these were somewhat tempting, I went for something that was more clearly a medical alert bracelet. The whole point of wearing it is to make sure that there is no question that I get the best care possible, with my medical issues and medication understood, even if I am not physically able to get this information across.
In many ways, the thought of being incapacitated is scary. But it’s even scarier to think of all of the information that would be lost/unavailable in such a situation. But then again, that’s the point: to be prepared for situations that you can’t prepare for.
But I will say that all of the doctors I encountered in the hospital were very nice, and I do feel as if I received a high quality of care. But it got me thinking about the fact that, in some ways, the doctor is only as good as the patient, and the doctor-patient relationship needs to be a partnership (of equals, in the best case scenario).
As I’ve started to get my medical info organized – my original binder is inches thick full of medical records and is no longer practical – I’ve realized that without having much information with me, I’m not sure that my reports to doctors could have been trusted 100%, or that the story was reported consistently and identically to every doctor I encountered (and there were many of them).
This is not to say that I purposefully lied to doctors, which I didn’t. But coming into the ER with a fever, being alone and nervous, and then being pumped with high doses of antibiotics, was my word really worth the weight it was given?
Now don’t get me wrong. I’m the patient and I know my situation the best, but in the absence of something concrete to give to doctors, how do I, or they, know that they have all of the information they need in order to give me the best care?
As an example, the longer I was in the hospital, the foggier the timeline became from receiving the pneumonia shot on Friday morning to ending up in the ER on Sunday afternoon. And this is reflected in the story that is outlined in the copy of the records I was given of my hospital stay. Reading it now, I think, well, that’s not exactly how it happened…Close enough, maybe, but not perfect…
And accuracy will become increasingly important the more complicated my medical history becomes, which it undoubtedly will.
And I say this even when I have my parents listed under ICE (“in case of an emergency”) in my cell phone, and I have a note in the ICE that says to check for the medication list in my wallet.
We, or at least I, have a tendency to put the responsibility squarely in the lap of my doctors. They are, after all, the “experts.” But I’m realizing more and more that it is increasingly important for the patient to be an expert, too. This can be difficult when you don’t know how your body will react to certain things, but being the arbiter of the most information possible means that there’s less of a likelihood that you will slip on things, and therefore, less of a likelihood that your doctors will (especially in the case of being in the hospital and seeing mainly doctors that you are not familiar with and who are not familiar with you).
So aside from trying to put a manageable binder together of my most relevant medical information, I also took the plunge and purchased a medical alert bracelet. I had been avoiding such a purchase because a) they can be relatively pricey, so it is somewhat of an investment, and b) it actually means admitting for real that I am sick.
But this purchase is an investment in my health and my life. It covers my butt in the event that I cannot speak for myself and need medical treatment. One thing that has been stuck in the back of my mind is what if something happened to me while I was teaching? While I would hope that as college students, my students would at least have the presence of mind to call 911, that’s the most I could expect from them. And in the event that I end up in a situation where there is no one around to speak for me who knows my health issues, I need something that will speak for itself.
The bracelet I purchased is Velcro. It came with a little waterproof strip that you can write your name, medications, doctors, and important phone numbers on. The strip fits into a pocket on the inside of the bracelet, which can easily be pulled out if necessary. Plus, it’s pink. Need I say more?
I purchased the bracelet from Lauren’s Hope*. This website has many different versions of medical alert bracelets, many of which are made to look like everyday jewelry. While these were somewhat tempting, I went for something that was more clearly a medical alert bracelet. The whole point of wearing it is to make sure that there is no question that I get the best care possible, with my medical issues and medication understood, even if I am not physically able to get this information across.
In many ways, the thought of being incapacitated is scary. But it’s even scarier to think of all of the information that would be lost/unavailable in such a situation. But then again, that’s the point: to be prepared for situations that you can’t prepare for.
* I have posted about this product out of my own personal experience with it, and not because I have received compensation, financial or otherwise, from this company.