Keeping the secret in a new situation

[HnyMustard]

I'm a bit nervous, and I'm hoping for a bit of insight here. I was diagnosed HIV+ last Summer, and only my partner and doctors know.

Fast forward to today... I was just diagnosed with non-Hodgkins Lymphoma. Everything is all happening so fast, and I did tell my Mom about this one. I woke up from a haze last night to my partner telling me that she's flying up TOMORROW. She's going to stay with us in our little apartment for the next two weeks, and she will go with me to my doctor appointments and for moral support.

I feel happy that I can have some support finally for a disease that I'm going through, but I also have this other one that I'm trying to keep secret from her. Needless to say, I'm nervous that my HIV status will be leaked in a healthcare setting. I just know my little old mother doesn't need this icing on the cancer cake.

Anyone gone through a similar situation? Have advice? Are doctors good at keeping secrets like this?

Also, if you have been through similar... which was worse.. the bone marrow biopsy or the lumbar puncture?  Feel free to PM or talk in the thread-- I wouldn't mind hearing from you.

[thunter34]

I'm not judging, but the instant reveal of cancer while still hiding the HIV sounds an awful lot like you're carrying a big bag of shame around.  Isn't it better to see this as an opportunity to lay all the cards down?  What made this disease (which is likely to be trickier in treatment) OK to reveal off the bat?

But for the record....I imagine you should be able to be alone in the doctor's room for a few minutes and just tell him to be sure to keep a lid on it.  It probably wouldn't come out anyway, but a little "pssst" to your doctor beforehand might make you feel breathe easier.

[Joe K]

I just know my little old mother doesn't need this icing on the cancer cake.

Being a parent myself, you really don't have the right, not to tell her, if you want her full support.  While I can empathize with your reluctance to tell her, I would also submit that you have no idea of what it means to be a parent.  One of our fears, if not our greatest fear, is that our own children would not come to us in their hour of need.  Yes, she may be shocked, hurt, angry and sad, but just like you, she will adjust to the news.

What is paramount, however, is the bond you will create with her, by being honest and accepting whatever love and support she can provide.  Major health issues are one area where I don't think we have the right to be too selfish.  People who care for you, will find out, sooner or later and who would you rather they hear the news from?  You or someone else?

I hope you can talk with someone about why you can't disclose your status to your mother.  It's really important that you understand why you are so fearful of disclosure, because the damage that can result, could be substantial and trust me, the longer you wait, the more angry she will be.  Not that you have HIV, but that you waited so long to tell a person who loves you unconditionally.

Welcome to the forums.

Joe

[spacebarsux]

Hi Hnymustard,

I don't have much to add to what's already been stated.

Just wanted to say best wishes and all the strength in overcoming the cancer as soon as possible.

From what I understand Non-Hodgkins Lymphoma has a high correlation with severe immuno-suppression, not just HIV infection per se. Assuming your CD4 is very low, it should follow that once it starts to rise the cancer too will diminish and soon vanish.

Hugs

[HnyMustard]

Hi you three,

Thanks so much for the great replies. These are all things in my head too.. believe me. You are correct-- I do feel shame with my HIV status.

The HIV unfurled a bit differently.. while quick, it was slow. I continued working and showing face in my normal places. I wasn't debilitated, and the medicine quickly recouped quite a bit of my CD4 count.

This cancer thing is different, I have been in and out of the hospital and now on short term disability. My whole life has effectively stopped. Saying I have cancer to my mom wasn't easy, but I knew she needed to know because things were sliding fast. I do think it was easier to say because my family has a history of cancer, not HIV.

I do feel quite the fool to end up in this predicament. I know there may be a way to gently bring her in the fold with her visit here.

What is paramount, however, is the bond you will create with her, by being honest and accepting whatever love and support she can provide.

You're gonna make me tear up, killfoile. There is so much to think about. Thanks guys.

[tednlou2]

Just wanted to say hello, and to wish you all the best dealing with the lymphoma, while trying to figure out whether to tell your mom.  I'm sorry you're having to deal with all of this. 

It is interesting how all of us would not question telling our friends and family we have cancer, expect for being concerned how they would take the news.  With HIV, there is so much shame and embarrassment for many of us.  I'm right there with you.  My partner and doctors know.  Here's the part about family learning in a healthcare setting....My brother and his partner found out, because a nurse came in and announced the HIV med she was giving me.  My brother and his partner are in the med field and recognized that med to be for HIV.  I remember lying in my hospital bed and having anxiety over family and friends coming to visit.  I was so afraid they would somehow overhear something, or ask too many questions.  Or, whether my mom had the right (since my partner is not legally my spouse) to get information.  It caused me to wish they just wouldn't come, or would only stay a few mins.  I had just learned my status and was still processing it, so I was not ready to tell my family.  The stress and anxiety (while very ill) worrying they would find out was not good.  I remember a nurse coming in telling me the doc was coming to talk to me, while my mom was in the room.  Well, I got to see the doc maybe once a day (sometimes every other day), while I was in the hospital.  If I didn't see him then to be able to ask questions, I would probably have to wait until the next day.  So, I asked my mom if she would go get her address/phone book out of her car, which was parked far away.  I made up an excuse that I wanted a family member's phone number.  She also wanted to stay the night and give my partner a chance to go home.  I kept saying she should go on back to my house.  I think her feelings were hurt, thinking I didn't want her there.  It was way too stressful.           

But, I know that isn't healthy and hiding things just makes relationships strained and not as close, because we're keeping secrets about important things.  I also appreciate a reluctance to tell your mom that on top of this cancer, you also have HIV or AIDS.  I'm not sure of her education level on the virus, or her emotional health now.  I would say don't beat yourself up, if you choose to not tell her now.  I'm 3 and half years into knowing my status and still haven't told my mom.  I know I should do it, and just get it out of the way.  If, knock wood, I'm ever in the hospital again, I won't have to deal with telling her then.  There is that shame there.  But, I think I also have this need to protect the "gay image."  I hate the feeling of others thinking being gay equals HIV.  I realize a lot of that is me projecting my own feelings on others.

Anyway, I wish you all the best with everything.  Let us know what you decide to do and how it goes, if you don't mind.

Edited for spelling       

[darryaz]

This decision was made for me early on, as a really stupid doctor blurted it out in front of my mother.

Now, for the lumbar puncture..... I believe I have had 6 but I've actually lost count.

The skill of the doctor performing the puncture makes a huge difference in how painful it is.  I had one "newbie" resident perform a puncture that took 3 hours and was excruciating.

Since that happened, I always insist on being sedated before they do a puncture.  Just let the doctor know you are really nervous about it.  I've never had anyone deny that request.  It's a much nicer experience when you don't even remember it.

[bocker3]

Here is what I am seeing as I read your post.....   

this secret is causing you a large amount of stress and anxiety.  As  you fight through your lymphoma, the last thing you need is self-inflicted stress and anxiety.  I don't know your mother or your exact reasoning for keeping your HIV secret from her, so I will not say that you should tell her.  I will, however, ask you to consider her reaction to your lymphoma revelation -- look how she handled that -- she came running to your side to be there for you.  Sounds to me like a woman who loves and supports her child.  Also -- sounds to me that you NEED the support, yet your secret is causing you anxiety about it and, almost a desire to push her away.
Think hard about it and try to remove unneeded stress.

Hugs,
Mike

[mecch]

What was your reason for not telling your mother about HIV?
Needless worry?  She couldn't handle the education required?
If she can handle the education required to understand your cancer diagnosis, treatment, and prognosis, than she can probably handle the HIV stuff.

I had an idea.  If your partner gets on well with her, let your partner do most of the handling of the HIV revelation... The questions, etc. etc..  If you don't have the energy to do it, but still think its the moment to disclose.....

So sorry to hear of the cancer diagnosis!!