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Old 02-21-2009, 02:38 PM   #1
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What to tell people

Hi All,

Not sure if this subject has ever come up here before, but it's something I've been struggling with. Basically, what do you tell people about your medical issues when you don't want them to know what's really going on? I have about ten really good friends that I've felt comfortable telling about this -- they know about the LEEP and the biopsies and the HPV thing. However, I don't think it would be wise to tell anyone else about this, just because of the negative connotation HPV might bring. I'm not ashamed about it in the least, but I remember when I was getting the Gardisil vaccine a few years back, people thought I was silly for paying almost $400 for protection against some "rare" STD.

Anyway, just something I think about as I know I'll need to ask for a day off from work soon to go to the gyn/onc. I work mostly with men, so I really wouldn't feel comfortable discussing this sort of thing with them. However, I have a good idea they're going to ask what's going on just because they're much nosier than they should be. This is why I feel like I need some sort of fake condition to give them as an excuse; something that emphasizes the severity of this but doesn't give it away. Additionally, I can't even tell my parents about this and they've always been the first people I've told about medical problems. However, they're older and strict Catholics and seriously think I'm a 33-year-old virgin.

So...I guess please let me know if any of you have had this issue and how you've dealt with it. Thanks so much.

 
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Old 02-21-2009, 02:47 PM   #2
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Re: What to tell people

First off you can be a virgin and get HPV. I realize you say you're not but just as an FYI. As for your male coworkers or bosses, that is a right to privacy issue, and no one can force you to tell them of your personal medical issues. You have a legal right to privacy under HIPAA regarding your medical information. I'm dealing with possible cervical cancer wouldn't be too far from the truth though I don't really condone lying per se I understand your predicament. You say you're not ashamed. I would rethink that one. If you weren't ashamed to some degree you wouldn't be concerned about the potential negative connotation. Unfortunately STD's still bring stereotypes and only through increased awareness and information can we ever hope to change that.

Last edited by Drafly; 02-21-2009 at 02:48 PM. Reason: typo

 
Old 02-21-2009, 03:03 PM   #3
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Re: What to tell people

I really struggled with this topic. Who to tell. When. How. How much.

I am normally a very talkative person and tell people what is going on with me. When I was diagnosed with HPV I didn't tell ANYONE except my one best friend (and husband). After 2 months, I told one other friend. No one else knew anything for another month (now 2.5-3 months in to my diagnosis). By the time I had my cold knife cone about 5 people knew. Even after I got my cancer diagnosis, not many people knew for another month.

I didn't really start telling people until I'd sat down with the gyn/onc and we'd discussed my treatment plan and discussed surgery dates.

Many people just know that I had cervical cancer and a hyst and that all of the cancer was removed. Others know about the HPV connection, but that is only if they say something that leads me to think that they are aware of the connection and won't make a judgement about HPV being an STD.

Telling others is just one of the details of having HPV and HPV related complications. This is not an easy journey!

(((hugs)))

 
Old 02-21-2009, 04:05 PM   #4
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Re: What to tell people

Dragonfly,

Honestly, I'm not ashamed about this. But I'm sure you know a few people as I do that are extremely gossipy to the point of being malicious. It's these few people that I'd really rather not know about this; it would really make me sad to know how they might spin the situation. Even some of my friends have tried to implicate my boyfriend as being the culprit that gave this to me -- I try to explain that I could have gotten it at any point and that men can't be tested for this, but it won't sink into their heads. I think it's most people's belief that when a person gets tested for STDs, they get tested for every possible thing.

As for the work thing -- good point. Maybe I just say I'm dealing with a possible tumor and leave it at that. I don't think too many people are going to pry after that.

Pickle -- I know what you mean -- I'm quite open and normally tell people everything. I'm pretty comfortable with myself and don't try to hide anything from people. This is just a tad different for me, however. I guess one bright side is that most of my close friends (both male and female) know about this and I hope that in some way I'm increasing awareness of this -- next step is to tell all my girlfriends to request HPV tests and ECCs if necessary!!!

 
Old 02-21-2009, 06:49 PM   #5
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Re: What to tell people

Quote:
Originally Posted by Elizabeth1975 View Post
I hope that in some way I'm increasing awareness of this -- next step is to tell all my girlfriends to request HPV tests and ECCs if necessary!!!
:great big knod in agreement: YEP! Any woman who is over 30 and we are having the tiniest discussion of paps - I suggest they ask for the HPV/dna test. I also tell them that if they EVER need a colpo to ask for an ECC. I thank God my doctors did both of those tests. Cancer isn't easy to deal with, but stage 1a1 is MUCH easier to deal with than latter stages.


 
Old 02-21-2009, 06:54 PM   #6
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Re: What to tell people

Hi Elizabeth --

I didn't tell anyone except my cousin and one very good friend about the HPV diagnosis; and frankly, anyone that looks down their nose at anyone for having HPV should look in a mirror, because they probably have/had it at some point too, and just didn't know it. That having been said, I do understand not wanting people to know, and feeling like it's something to be ashamed of....but I bet if you discussed it with more people, you will hear of more and more people that admit they've had it, or can refer you to a friend/relative that's dealt with something similar. Truly, it's only uninformed people that will make judgments against you.

As for what to tell coworkers, really it's none of their business. Legally it's also none of their business. The Family Medical Leave Act (FMLA) protects you from losing your job for absences due to a serious and/or recurrent medical problem. The form you need filled out for your employer in order to exercise your rights under this act does NOT need to have a specific diagnosis; your MD needs to check off the box that it is a serious medical condition, or a chronic condition, et cetera, and the length of time (or expected number of occasions) that you will be absent. The doctor does not even have to put their speciality, so unless someone goes and looks up his/her credentials, they won't even know what type of condition you are treating for. Only your personnel person is entitled to this information -- and they are legally obligated not to share that info with anyone. All employers with more than 25 employees are subject to this Act (it may be 50 now, but I'm pretty sure it's 25). So....there is no need to disclose anything more. If this doesn't apply to you, I'd suggest saying something very generic, like your recent check up (and you don't need to specify what type of check up) came back with some abnormal results and you need to be checked to make sure it's not something more serious. Choke up a little bit and be upset....if they are decent at all, they will back off and not want to pry. Or, tell them flat out this is all very upsetting and you don't want to cry in front of them, and that when all is said and done you'll fill them in, but it's too upsetting right now. That way you are not lying, but also not revealing much. That's the best I can think of!

Aside from my family, there are very few people that I have told what's going on. I work with seven wonderful ladies, all of whom I'm very close to; I told all of them. I work in court, and am friendly with many of the attorneys and such that regularly come in. Many of them have asked me where I've been, because I've been out a lot (I was at home hysterically crying for the first few days after I was initially diagnosed, and again after I got the results of my cone, plus I've been out for medical appointments). I travel frequently, so those that have asked I've simply said oh, you know me....I was off to France again. Much easier than explaining that there's a medical issue, plus I don't want anyone feeling sorry for me, or looking at me thinking hmmm, she doesn't look sick. I understand it may be harder if you work with a bunch of guys, and of course they're nosy and want to know what's up....tell them it's a "female thing" and they'll probably all run to hide under their desks and never ask you again!

As for your parents, I struggled with that one too, but for different reasons. My biggest fear was how they would take the news, and I honestly thought about keeping it from them....but decided against it, and they know what's going on. HOWEVER, I am having significant issues with my mother feeling excluded because I don't let her in the room when I'm with the docs. Sorry, but my mom doesn't need to know my sexual history, et cetera....she also seriously disrespects my decision to have a trachelectomy, because she thinks I'm too old (39) to have kids anyway and thinks that a trach is riskier than a hysterectomy, and doesn't understand/respect my reasoning for wanting to keep my uterus. She also hasn't bothered to look anything up to understand this better, and since she's not in with me talking to the docs, she thinks I'm lying to her or hiding something....next to worrying about my actual condition, the stress from my mother has been the worst.

As hard as it is, I would rethink not telling your parents, although that is a personal choice. While they may be Catholic and older and honestly think you're a virgin, they are still your parents and love you, and their support could make things easier. It's a big burden to keep all the fear to yourself, and putting on a brave face for everyone else isn't always the best thing for you. Sorry I don't have better advice to offer!

I guess I am lucky that none of the friends I've told have been judgmental about the HPV situation...and as for laying blame, I have pretty much already discussed what I think happened in my situation, so I beat them to the punch in the laying blame department!

 
Old 02-21-2009, 07:11 PM   #7
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Re: What to tell people

My parents are 80 and 87. I am an only daughter. My parents are very conservative. I told them about the cancer. I *might* have mentioned HPV, but it was only in passing. They aren't exactly sure how my cancer was diagnosed (HPV test then the colpo). All they know is a couple of doctors ran one more test than they normally would run. If they have learned anything about HPV being an STD, then it wasn't from me and they haven't brought it up with me.

I didn't really plan when I was going to tell people. It just kind of happened with each person I told. It was in the flow of the conversation.

Remember that the way people react isn't always the way you think they'll react. I found I was trying to be more comforting and reassuring to many of the people I told than they were to me. I also heard a lot of people telling me about their friends/family members who had hysts (for a variety of reasons). One lady told me her mother had had "the same thing." It ends up, she had a hyst, but not cancer. Take some of their comments with a grain of salt.

Good luck! Start small. Tell one person and see how you feel after that. You'll have a better feel for how people will react.

 
Old 02-21-2009, 10:18 PM   #8
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Re: What to tell people

Yeah, I already know that a few of my friends have had HPV, it's just some of the other people that I've told about it are so ignorant that it really frustrates me. One person tried to tell me that I'd only have six months left to have a baby and another thought I was going to have to have my clitoris removed! I wish I were joking, but I'm not. Ignorant stuff like that just makes this really hard to discuss with people. I'm not saying that all are like that -- some, even if they don't understand it, have been very supportive. I also feel bad for my boyfriend; he has yet to tell any of his friends about it. He's afraid, again, because of ignorance, that they will all blame him for giving this to me just because I discovered it while we were together.

I know legally with work that I don't have to say anything -- I think it's just because of who I am that I always overly explain things. I need to work on that!

I think it's best for me not to tell my parents, not just because of the HPV thing, but also because my dad is a huge worrier. I'd rather not do that to him because I'm pretty sure this is going to turn out okay. And, even if I didn't explain the HPV aspect to them, I'm sure one of my relatives would let the cat out of the bag, and that would not be cool. My family's "holier than thou" wrath is something I don't want right now. I even had an aunt say at a Christmas gathering this year that her daughter's school had sent her home with a list of vaccinations she needed and Gardisil was on this list -- she exclaimed that HER daughter would not be needing that. I wanted to throw my fork at her!

But I digress, this is and will continue to be a sticky subject for me. Maybe I will tell a few more people, but I think everyone that needs to know pretty much does already.

Zoe -- one quick thought I just had about the situation with your mom: I kinda think that after you have her grandchild, I don't think she's going to be doubting that trach anymore!!!

 
Old 02-22-2009, 06:08 AM   #9
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Re: What to tell people

Hi Elizabeth --

Oh, I hope you are so right, and I can have that grandchild for my mom!!! I like the way you think

As for work, I totally understand even though you don't *have* to tell people, they are concerned, interested, nosy, et cetera, and it's sticky not telling them....but seriously, if you work with a bunch of guys, use the "it's a female thing"....they will run!

I'm sorry you have encountered sooo many ignorant people! I must admit that I was rather ignorant about HPV myself, and never even really knew what dysplasia was, and never heard of LEEPs and cones. One of the biggest reasons I've told the people I've told, aside from the fact that I am rather close to them, is to let people know that something like this can happen -- and this will sound a little self-righteous, and I certainly don't mean to -- but even to someone like me. What I mean by that is this: I think a lot of people think that if they are not promiscuous, do not lead a risky lifestyle, take care of themselves and go to the doctor, cervical cancer can't happen to them. Um, hello, just read the stories of the ladies here....according to the above guidelines, none of us should be here, yet we are. So, those who know me, especially those with daughters, need to know that yes, this can happen. Gardasil wants to make sure these girls are one less? Well, I want to make everyone I talk to one less by making sure they take HPV seriously, and to make sure they are getting properly monitored.

I am also amazed by the number of people who have responded by saying oh, yeah, I've had a LEEP, my sister had one, X, Y and Z have had some scares....it's kind of like a little club that no one wants to belong to, but those who have gone through this have all been very willing to share their experiences. I've talked to total strangers (who are just a friend of a friend), who have been super supportive and shared their story. Seriously, you'd be amazed at how many people have gone through this, but just choose not to share the info.

As for your boyfriend, I'm glad he's being supportive, because that makes a huge difference. However, he need not tell ANY of his friends!! What's going on in your cervix is none of their business. I can understand maybe he needs a little support from a good friend, but his whole buddy system in general....I say they're on a need to know basis, and they don't need to know!

This is a sticky subject for everyone, for a variety of reasons....you are not alone in this dilemma. But this will also show you something else: who is really your friend, truly concerned for you, and someone you want to keep in your life. I always knew I had some good friends, but how they have looked after me, checked in, and offered to help me out is truly amazing. It will also let you know who needs to be kicked to the curb....this situation has finally given me the ability to break away from an on again/off again boyfriend that I had been with from age 16 until about a year and a half ago (so, nearly 22 years!!). Even though I have been seeing someone else for a while now, we still kept in touch (22 years is a long time). He checked in with me, and I told him what was going on. His response, before even saying wow, I'm sorry, or hey, how are you doing, was oh wow, is this from HPV? Do I need to go to the doctor, what's going to happen to me (meaning him)? I had already suspected I had gotten the HPV from him, as he was the only one I was with in the eight years prior to my diagnosis (although of course I don't know that for certain), and well, I knew during that time he was cheating on me with someone who I know through friends of friends to be not be very choosy with whom she sleeps (was it stupid of me to not get away from him sooner? You bet....you really do sleep with whoever the person you sleep with sleeps with, if that makes sense). The fact that he related this to HPV also raised my suspicion, because frankly, he's not that smart, and I can't believe he'd make the connection if he hadn't been through this with someone else. He also told me that a "friend" of his had just beaten cervical cancer, and that's how he knew, but I'm not buying it. Suffice it to say by the end of the conversation he was telling me he couldn't believe this because "he'd never had to deal with THIS" before, meaning being worried about an STD...he also wanted to know what he should tell the girl he was cheating on me with. Needless to say, I have not answered another text or phone call from him since. So, at long last, I have the proof that he is scum that doesn't deserve my time or attention.

Come here for support; we will all help you!! You will be just fine, so perhaps leaving your parents out of it, given what you've described, will be the best for you.

((hugs))

 
Old 02-22-2009, 06:10 AM   #10
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Re: What to tell people

Regarding the comment on the FMLA, it is only available if you have worked at the company for 12 months any less than that you're not eligible. Also, it is only for 90 days. While this is usually consecutive, I've heard of people who have done a modified FMLA and taken a day here and two days there type thing. I utilized the FMLA when I got my recurrence a few years ago. Unfortunately I needed more time than that and my company fired my anyhow.

 
Old 02-22-2009, 07:08 AM   #11
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Re: What to tell people

Dragonfly is right, you do have to have worked a certain number of hours before you are entitled to use FMLA, and it does only cover 12 weeks in any 12 month period. If you have already used FMLA for any reason and have exhausted it, you need to have put in a certain number of hours before you are eligible to get another 12 weeks. There's a whole bunch of regulations, but I was trying to give a basic understanding of the concept.

Federal FMLA covers consecutive as well as intermittent absence, such as for medical treatment or sporadic illness (I have used it in the past for migraines -- out a day or two a month, and since it's FMLA, they can't hold that against me or discipline me for being absent -- being a state government employee, attendance is based solely on when you use your sick time, and using FMLA takes those occurrences out of the equation). Some states also have FMLA policies that supercede and give an additional benefit beyond the 12 weeks; for instance, in CT we are allowed 16 weeks. Further, a lot of states also have their own FMLA act, which provides for equal to or greater than federal FMLA....it's bureaucracy, so there's a million stipulations. But, it is something that is out there and not everyone knows about.

 
Old 02-22-2009, 09:12 AM   #12
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Re: What to tell people

Zoe -- I was just reading some older posts on here yesterday and there's a story from a woman in Alaska who had a successful pregnancy after a trach. Wonder if there are others that have been on this board...

Luckily, I work from a home office, so I don't have too much contact with the men at work (they can't see what a mess I've been this past week). But, they still usually know a little about what's going on with me. Speaking of CT, I just realized you're located really close to my company headquarters -- we're in Norwalk.

I know what you mean -- but I wasn't even oblivious to HPV! I knew about it from years ago when I dated a guy that I suspected might have genital warts (he did, and he was lying to me). Anyway, I did some research online and found out about the wart issues and the cervical issues -- that's why I ran out the minute I could to get the Gardisil shot! I was, however, not aware of the fact that it could get as severe as it has in my case. I mean, geez, I get my annual paps so according to most of the stuff you see, it shouldn't have been missed until it had reached Stage 3 (or whatever else I might have). On the other hand, I thank my lucky stars every day that through a serious of mishaps, I found out just how bad it was!

Just wish more people would share...seems like it would make this situation easier for everyone dealing with it.

Well, originally when my boyfriend talked about telling his best friend, it was when I just knew I had CIN I and I told him it was none of his friend's business. Now that it's progressed, my boyfriend is just a little scared and wants to discuss it with his friend for support; that doesn't bother me. Additionally, his best friend is my friend too so he probably should know.

Yeah, your ex seems a little selfish in this situation. I wonder if he knows that his little mistress has HPV??? I do hope he says something to her so that she can get checked out. In a way, I wish I did know where I got this from so that they could warn their partners; there's still a lot of woman that don't even bother with annual paps. And I know how frustrating it is when you do know people that are extremely promiscuous who can just keep on doing what they're doing and come out of it unscathed.

And YES, this does show you who your good friends are. In my case, it showed me just how wonderful my friends are. One of my friends took the morning off of work to come with me to my first biopsy. Others have done a lot of asking around to find good gyns in the area (too bad I couldn't get in with any of them). The evening after my LEEP, my neighbor stopped down with freshly made waffles (we had just been talking about waffles the night before) and all sorts of possible toppings I might want. Another friend came over to watch movies with me. Also, when I found out about the bad glandular cells and was freaking out, I told my other neighbor about it -- may I add that this guy understands nothing about the female anatomy. Anyway, to my surprise, he called me the next day at 9 a.m. with a recommedation for a gyn/onc from one of his coworkers that is battling ovarian cancer right now; additionally, this woman has been emailing me and trying to help out anyway she can!

So, all in all, my friends have been nothing but awesome about all of this. Ignorant in some cases, yes, but they are concerned.

Dragonfly -- I really hope you've been able to find employment since you were let go??? I'm so sorry that happened to you.

Last edited by Elizabeth1975; 02-22-2009 at 01:22 PM.

 
Old 02-23-2009, 06:36 AM   #13
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Re: What to tell people

Quote:
Originally Posted by Dragonfly23 View Post
Regarding the comment on the FMLA, it is only available if you have worked at the company for 12 months any less than that you're not eligible. Also, it is only for 90 days. While this is usually consecutive, I've heard of people who have done a modified FMLA and taken a day here and two days there type thing. I utilized the FMLA when I got my recurrence a few years ago. Unfortunately I needed more time than that and my company fired my anyhow.
This is why I thank God every day that I work for the federal government. Not only do I have awesome health insurance, but they seriously cannot get rid of me.

You can use your sick leave until it runs out, (and most people have months stored up) or you can take FMLA, or they have this volunatary leave transfer program where if you run out of leave, other employees can "donate" their leave to you!

 
Old 02-23-2009, 07:03 AM   #14
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Re: What to tell people

I've told my mom, my sister, my best friend, my boyfriend and really no one else knows the whole story. With my mom, my sis, and my friend, all we've talked about to do with HPV is that it's SCARY how common it is and why didn't any one tell us this before! I've given them all the HPV lecture about how 80% of women get it and how you can get it even if you use a condom, and how men never get tested for it!

As for my boyfriend, he was the best. He actually had a lot of knowledge of the subject . . . he seems to have lots of random bits of knowledge. Anyway, when I told him that I probably had HPV (this was after the abnormal pap, but no further diagnosis) he said, "You and everybody else."

I've not even talked about this with my dad. He has no idea any of this is going on. It's not that I think he'd judge me, but he is HORRIBLE when it comes to sympathy. He once let me know that a family friend had died by emailing me a link to the news story about it!!!! He's not a bad person, he just is completely clueless when it comes to being senstive.

At work, I've told no one anything really. My boss asked if it was cancer. This was the day I found out the diagnosis, and so I was crying in her office. I told her yes because I didn't want to say, "Depends on who you ask" and then have to explain. She mentioned her mother and sister had been through the same thing, so I'm thinking she thinks it's breast cancer. She then pretty much stopped giving me work to do. Thank God, because I couldn't have done it! Once I got the "clear margins" message, I told her that my doctor gave me good news and to put me back to work! Everyone else at work just knows that I had surgery. I've found that if you don't elaborate, people just don't ask!

 
Old 02-23-2009, 03:23 PM   #15
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Re: What to tell people

Oh, I so wish I could get a break from work when I have bad days with this! I've been useless quite a few times and I don't have time to not be productive!!!

Huh, you never know, maybe your boss was referring to cervical problems!!! I really wish I still had my female boss...

 
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