Unwanted Disclosure!

[odyssey]

So... my mom and I went shopping this morning, and then we headed to a restaurant to get some breakfast, and as we were parking she said there was something she needed to tell me before we went inside. Then she proceeded to tell me that she had told my sister I have HIV. She said she wanted my sister to know so she could support me.

I have been poz (diagnosed) for almost two years now and have never told my sister because she has a preschool aged little boy and I was afraid she wouldn't know enough about how HIV is and isn't transmitted and wouldn't let me see him ever again. Also, I just wasn't ready to let her in on my "secret". But apparently my mom didn't care.

Well, I told my mom I wanted to go home. Skip the restaurant, and had her bring me home and just kept quiet until I was home. Then I said goodbye, got out of the car and left. I'm so angry, and hurt, and just confused as to why she would break my trust like that.

Has anyone had someone really close to them who they always could trust break their trust and disclose to someone they didn't want to know? How did you deal with it?

odyssey

[ElZorro]

ouch...that does hurt a bit, Odyssey. It hasn't happened to me (that I'm aware of).

My first thought in reading your post, though, was that if I were in your shoes, I'd get in touch with my sister as soon as possible to explain why I hadn't confided in her and what my fears were relative to not seeing the nephew I love. Hopefully, you can talk through this and repair the damage mom did with good intentions.


Best wishes

~ Z

[nychope1]

That's a tough one brother. I'm sure your mom meant well. I agree with ElZorro. It's your sister and she loves you and probably knows a bit more about HIV then you think. Good Luck...

[mecch]

Well, give mom a pass but also a piece of your mind, and take advantage now of whatever benefit can come from your sister knowing. What is done is done.

[gregftl]

Isnt it against the law for a person to tell other people that someone is HIV poz? If it was anyone but your Mom i'd say take them to court and sue! But it's your Mom you cant do that. My Mom did the same to me. I told her i was poz two years after i tested for it b/c i knew how she would react. I had to start the phone call off like this "Mom, I'm ok, I'm on meds that are going to keep me alive for many years. Ok I'm HIV poz". I thought she was gonna fall apart but i guess starting off about the meds and that i'm ok softened the blow. BUT then she went off and told my brother and my entire extended family. And i grew up in a very small town in Southern Illnois .......needless to say everyone but my immediate family doesnt talk to me. I guess they think I'm gonna give them HIV thru an email !!!

[Jeffreyj]

I had a friend tell another friend, and I was pissed. I tried to calm down and gather my thoughts before I spoke to him.
I told him how angry I was with him. I made it clear to him that "this is not your information to share, it's mine.. I decide who to tell and who not to."

He thought he was helping me, so I didn't get too crazy mad. But I made it clear to him that this was not his job.

I can understand why you got so angry with your Mom. She thought she was helping you. You just need to explain how it hurt you and why you got so angry.

I hope things work out for you.
Jeff

[odyssey]

Well, as much as I didn't want to talk to her, I called my mom and told her how angry and hurt I was. I also told her that I didn't want to talk to her, felt I didn't know if I could ever trust her again, and just wanted space. I think she got the point. Of course, I'm still very, very upset by all this, but I'm going to see my therapist tomorrow so hopefully he'll help me sort through my feelings.

odyssey

[phildinftlaudy]

Hi Odyssey:
I recognize that this must be a very painful and hurtful situation for you.  I also recognize the reason(s) you gave for not disclosing to your sister. 

I also saw that you pointed out that your mother stated that her intentions for informing your sister were not done in a malicious manner - but rather so your sister could be an additional source of support for you.  As much as you are hurting over the disclosure - I do hope that you allow yourself to accept that your mother did not disclose your status to intentionally do you harm.  I also agree that you may want to call and talk with your sister and perhaps, see if your mother's intent to open up an additional level of support for you can actually occur.

I too get angry with my parents over many things - my whole family knows my status - but the parents pretty much stay in denial about it and it isn't something that they are comfortable discussing or hearing about.  It hurts me and makes me angry - however, that said, I'm having a recent change in my attitude based on the fact that my dad has been extremely ill and is in frail health.

My mother is also going through a lot in taking care of him and in "trying to hold it together" knowing that she may soon be alone after 47 years of marriage.

I'm saying all this to say - that I'm realizing that a person only gets one mom and one dad in life.  recognizing this has changed my view when I get upset with my mother or father.

In your situation - your mom told you that she didn't mean harm by disclosing - and while it wasn't her place to do so and you have a right to be upset - to a point - making a choice not to talk to her over the long haul is a conscious decision to knowingly cause hurt to someone who probably cares deeply for you (enjoys your company - as you said you all were going to eat together when she revealed the disclosure) and didn't set out to cause you harm.

This, of course, is only my opinion, but I hope that talking with your therapist helps and that you are able to forgive your mom and to gain support from your sister.

Wishing you the best.

[odyssey]

Hi Odyssey:
I recognize that this must be a very painful and hurtful situation for you.  I also recognize the reason(s) you gave for not disclosing to your sister. 

I also saw that you pointed out that your mother stated that her intentions for informing your sister were not done in a malicious manner - but rather so your sister could be an additional source of support for you.  As much as you are hurting over the disclosure - I do hope that you allow yourself to accept that your mother did not disclose your status to intentionally do you harm.  I also agree that you may want to call and talk with your sister and perhaps, see if your mother's intent to open up an additional level of support for you can actually occur.

I too get angry with my parents over many things - my whole family knows my status - but the parents pretty much stay in denial about it and it isn't something that they are comfortable discussing or hearing about.  It hurts me and makes me angry - however, that said, I'm having a recent change in my attitude based on the fact that my dad has been extremely ill and is in frail health.

My mother is also going through a lot in taking care of him and in "trying to hold it together" knowing that she may soon be alone after 47 years of marriage.

I'm saying all this to say - that I'm realizing that a person only gets one mom and one dad in life.  recognizing this has changed my view when I get upset with my mother or father.

In your situation - your mom told you that she didn't mean harm by disclosing - and while it wasn't her place to do so and you have a right to be upset - to a point - making a choice not to talk to her over the long haul is a conscious decision to knowingly cause hurt to someone who probably cares deeply for you (enjoys your company - as you said you all were going to eat together when she revealed the disclosure) and didn't set out to cause you harm.

This, of course, is only my opinion, but I hope that talking with your therapist helps and that you are able to forgive your mom and to gain support from your sister.

Wishing you the best.

I did call and leave a message for my sister. Whether she calls me back or not is up to her. I'm not sure if she will or not. As for not talking to my mom, I'm not planning on ignoring her forever, I just need a little time to cool off. Its all too fresh a wound for me to just pretend everything is okay right now. I know she was only trying to help, but we had already had a discussion about why I didn't want my sister to know (over a year ago, multiple times) and she went and told her anyway. It just hurts a lot. I guess with time the pain will fade and I'll probably forgive her. But right now, the same day, its just too raw.

odyssey

[phildinftlaudy]

I feel you Odyssey -
I hope you do hear from your sister and that it works out and does provide a strengthening of your relationship with her.
I also understand about the pain being very new and raw right now -
I will be keeping you and your family in my thoughts and hoping that it all works out.

I did call and leave a message for my sister. Whether she calls me back or not is up to her. I'm not sure if she will or not. As for not talking to my mom, I'm not planning on ignoring her forever, I just need a little time to cool off. Its all too fresh a wound for me to just pretend everything is okay right now. I know she was only trying to help, but we had already had a discussion about why I didn't want my sister to know (over a year ago, multiple times) and she went and told her anyway. It just hurts a lot. I guess with time the pain will fade and I'll probably forgive her. But right now, the same day, its just too raw.

odyssey

[tednlou2]

I've previously talked about how my brother and his partner came to know my status.  While they were visiting me in the hosptial, a nurse said outloud which meds she was giving me.  I don't think my brother has told my parents, because I think I would know by how they would treat me. 

The one thing I am angry about is the possibility that my brother and his partner pulled my medical records.  They are both in the medical field with his partner being a doctor for the hospital I was in.  I had asked my brother months later why he hadn't asked me about my health--whether I'm on meds, etc.  If it was the other way around and I knew his status, I would inquire about his health.  He told me he knew about my health already.  He never said he looked at my medical records and maybe he was trying to cover for never asking me about my health.  But, I really believe they looked.  If so, that makes me angry.  When I told him they could get into big trouble for that, he acted concerned that I would file a complaint.  I have basically let it go to keep trouble down, but if I had proof they looked it would cause trouble.  I do believe they either looked at hospital files or looked at medical papers at my home.  They have access to my home as I do their's.  They may have looked at files here at my home.  Either way, I would feel violated and feel he should have asked me instead of going behind my back.  He's always been very nosy wanting to know how much people made--looking at my checkbook, paystubs, etc.  He would say, "Well, you had it laying out for anyone to look at."

I hope you forgive your mom.  And, your sister may feel awkward contacting you now knowing that the whole ordeal upset you and violated your trust.  If she doesn't contact you, I wouldn't immediately take it as she doesn't care.  If my brother did look at my info, I'm sure he would say he was concerned and thought I wouldn't be honest with him.  I know that is the wrong way for anyone to look at things.   

[Hellraiser]

Isnt it against the law for a person to tell other people that someone is HIV poz?

Nope it sure isn't.

[emeraldize]

Hi Odyssey,

Have you considered that your mom didn't tell your sister solely to gain support for you, but to gain support for herself?

Sometimes daughters and mothers have very close relationships and to a degree prep them to be a familial successor, if not executrix, medical directive representative, etc.

Please consider that for a family member in particular it is a large and worrisome issue (despite meds and progress) to have a child with HIV. Even though you are an adult, you are her kid and she's concerned and may wish to have backup.

It's just another view to ponder and it's very hard for us, the infected, to envision what it's like to be a recipient of saddening, shocking information. They love us and yet they'll mess up and we'll mess up, too.

Em

[Ann]

Have you considered that your mom didn't tell your sister solely to gain support for you, but to gain support for herself?

Exactly what I was thinking.

[Realist]

Try having your HIV doctor disclose it without asking first (and yes there are laws about that), not once either but multiple times AND AFTER you wrote to them and withheld consent just in case they did it again (and we aren't talking contact tracing or anything to do with public health either that there may be justification for). That truly pisses a person off - if your medical information isn't safe with your doctor, who is it safe with?

More on that once the situation is resolved.

[ElZorro]

Have you considered that your mom didn't tell your sister solely to gain support for you, but to gain support for herself?

Interesting point, Em. When I told my mom, I let her know I was fine if she wanted to share the information with her husband, but I didn't want anyone else in the family to know. Sometimes, it's a pretty huge burden we place on people when we share our "secrets" and giving them an "outlet" can help them to keep the secret.

[odyssey]

To everyone who has mentioned that perhaps my mom did this to gain support for myself, I highly doubt this. My mom and my sister are hardly close at all. My mom has repeatedly told me that my sister is very unsupportive and isn't very good to talk to about things. She doesn't return phone calls, doesn't listen well, etc.

My mom needed someone to talk to for support, and asked me if she could tell my Aunt (her sister) and I gladly agreed. So yes, my mom does have someone to talk to. I even let my mom see MY therapist for awhile to have a professional to talk to about it. But as for my sister, my mom and I are the close ones, not my mom and my sister. But I can see why you'd think that.

odyssey

[Hoover]

Families all have their own strange dynamics....
Maybe some good will come out of it, at least that is one less secret between you all.

The only person we have told in my family is one of my sisters.
We needed her in the loop to send supplies from the states and give her incentive to do it in a timely manner.
As she is our employee, my partner slightly blackmailed her into silence!
Sometimes you have to do what you have to do.
With that secret gone, my sister and I are much close.

Good luck and remember that even with their faults, they are our family.

Hoover & Dr. T.

[woodshere]

The one thing I am angry about is the possibility that my brother and his partner pulled my medical records.  They are both in the medical field with his partner being a doctor for the hospital I was in.  whole ordeal upset you and violated your trust.  

I have been thinking about this and was wondering how far does HPPA apply within a hospital?  I work for an agency with several departments and we are all under the guidellines of HIPPA.  Although I have no reason to know about clients in other departments I have just assumed that it is kind of a blanket policy that since I work for the agency and have signed the necessary papers regarding following HIPPA guidelines I could get info about any client served by the agency regardless of which dept they are served by.  Anyone know?

[odyssey]

I have been thinking about this and was wondering how far does HPPA apply within a hospital?  I work for an agency with several departments and we are all under the guidellines of HIPPA.  Although I have no reason to know about clients in other departments I have just assumed that it is kind of a blanket policy that since I work for the agency and have signed the necessary papers regarding following HIPPA guidelines I could get info about any client served by the agency regardless of which dept they are served by.  Anyone know?

woodshere-

As a former LNA, I can confidently inform you that to properly follow the regulations of HIPAA, you may only view the medical records of patients whose care you are directly involved with. So, unless you are specifically caring for a certain patient, or have a reason to do so, like are ordering or working on their labs, etc., you may not view their records. In other words, even if you work at the a hospital, that doesn't give you free reign to view every single person's medical records. That would be a gross violation of HIPAA.

odyssey

[woodshere]

Thanks for the clarification.

[Granny60]

Isnt it against the law for a person to tell other people that someone is HIV poz? If it was anyone but your Mom i'd say take them to court and sue! But it's your Mom you cant do that. My Mom did the same to me. I told her i was poz two years after i tested for it b/c i knew how she would react. I had to start the phone call off like this "Mom, I'm ok, I'm on meds that are going to keep me alive for many years. Ok I'm HIV poz". I thought she was gonna fall apart but i guess starting off about the meds and that i'm ok softened the blow. BUT then she went off and told my brother and my entire extended family. And i grew up in a very small town in Southern Illnois .......needless to say everyone but my immediate family doesnt talk to me. I guess they think I'm gonna give them HIV thru an email !!!

Hippa laws forbid medical professionals,  your case manager, lawyers, social security people, insurance people, etc, from disclosing, but you are at the mercy of any person in the public's trustworthyness.  Sometimes family or  the odd duck on the street suck.  some people do it out of mercy, some out of spite,  some out of miss thought out  compassion, and some peoples  brains leaked out on their last trip to the loo.

[smiteler]

it goes with the territory with being positive. 
i'm sort of in the same shoes
the only person in my family who knows is my mother
my brother and sister have no clue as far as i know.
i'm sort of suprised they don't know by now, as my mother
 has hoof and mouth disease and she cannot keep her mouth shut.
i figure its only a matter of when for me.
i doubt it would even faze me as i half expect it.