Family.

[mitch777]

So I just sent one of my sisters an email to explain my current health. My family has never been a huggie wuggie group but we have never had many heated issues either.

It's just that they never seemed to bother over the course of my long illness to educate themselves on HIV. They are all pretty bright and ask how I am doing from time to time. Lately it just doesn't seem to be enough.

Is it too much too ask for them to take a bit of time over the past 31 years to do something other than make health suggestions? I honestly can handle that on my own. All I hoped for was someone to listen and do a bit of their own research to comprehend what I have been through and where I am at now.

Just venting.

The support of this (Poz) family has far exceeded my own. Thanks everyone.

[intaglio]

Mitch,

Through the lens of the relationships I have with various relatives, I say, "be careful for what you wish. You may receive it." 

Your relatives love you. They may actually like you, too.

How do you describe color to someone who only sees in black and white? How do you describe your journey with HIV to someone who can only observe it from the sidelines? HIV is something abstract to them. It is something real to you.

Is it too much too ask for them to take a bit of time over the past 31 years to do something other than make health suggestions?

Yes. It's time you accept that they're not going to change. Or you can continue to hope for a breakthrough in their enlightenment over the next 31 years.

Your choice.

[BT65]

Mitch, just to commiserate, my family does not know much about HIV either, other than what they have seen that I have gone through.  Which is OK, I don't expect them to educate themselves about all things HIV.  They support me, which is more than a lot of other HIV+ individuals can say, so that makes me happy.

You can only place realistic expectations on people.  If they haven't educated themselves over the past 31 years, I wouldn't expect them to now.

[mecch]

I suppose you could be more specific in this thread and to your family.
Its not clear what you want and are not getting.
If you want them to know about your experience with HIV personally I guess you will have to spell it out to them.  If you want them to know about HIV generally or to be proactive, I guess you could provide the information, or describe what proactive or "more active" input you would like. You might not get it though. But, you might.  Good luck!

[Jeff G]

One of the reasons I was drawn to the forums was because even my friends that were educated about HIV were not able to fully comprehend what its like to live with HIV .

When I have had HIV related health issues my family has asked me whats wrong with you in the tone of surprise I'm sick at all . They do this in part because after 31 years my issues are not something new to them and run of the mill par for the course I suppose . It takes one to know one comes to mind in this situation so I'm happy to have a forum family as well .

If you want them to know your pain there is always anal .   

[darryaz]

On the "be careful what you wish for" channel.......

My parents are terrific.  BUT......

When traveling with them and standing in line to board a plane, my mother (bless her heart) said loudly to me, "Honey, did you remember your HIV medicine?"

This was within the first few months after I was diagnosed so I was mortified.  These days that sort of thing probably wouldn't bother me.

[denb45]

Hey Mitch

My family is the same way

they do understand all about HIV/AIDS

but, they don't really support me in any of it

every holiday season, I'm the one that calls them
to wish them happy holidays, they NEVER call me

and i haven't seen them in almost 10 yrs. 

so I accept  this for what it is, I was closer to them

when i lived in the same City about 11 yrs ago

but I moved on with my life and my HIV/AIDS

I know that my family isn't ever gonna change

and sometimes when I think about them, it makes my very sad

you've been given some very sound advice here, and for what it's worth, your not alone Mitch

HUGS

DEN

[Miss Philicia]

Every family member that knows about your HIV condition reacts differently -- I would say it has little to do with HIV itself and more about your family dynamics and relations with that particular member.

My mother had breast cancer 20 years ago, so she knows what it's like in some way to have a life-changing diagnosis and something you have to pay attention to the rest of your life. Not on the same level as thrice annual doctors visits for eternity like with HIV, but fairly close. So with my HIV I am closest with her in terms of discussion of medical issues -- I pick up the phone when I am having a problem and she's always there ready to listen and discuss. She's never, ever uncomfortable discussing anything, in fact she gets mad when I withhold an emerging problem for too long. That's just her form of caring, not controlling.

Now my father will listen to anything about HIV and is fully comfortable, but he kind of sucks with going to doctors himself and can be forgetful about things I am going through. He's like that with everything though so I never take it personally.

I have a small family so that leaves my brother and sister-in-law. They don't bring up HIV issues unless they know I'm going through something particular, like if I just came out of surgery my brother will dutifully make a phone call that day to see how it went and how I am feeling. I think my sister-in-law leaves these tasks to him as the brother, but she's fine discussing things in person when I see her over the holidays, etc. As far as the two of them go, once my parents are no longer with me it will be on their shoulders to deal with me when problems arise. I have no idea how that will go particularly but I have a relationship with them that is mostly void of negativity so it's not something that worries me.

I know from reading other's posts on this forum concerning family that my situation is very fortunate, and for that reason I do not take it for granted.  But I'll emphasize that I as the patient have to realize that this is a two way street and if I keep silent about any issues I am going through then my family has no way to read my mind and anticipate my needs.

[skeebo1969]

  Mitch,

        I know you've briefly described your relationship with your siblings above, so I say this without really knowing the full dynamics of your family-- After living with this disease for 31 years, they may have grown complacent in their worry.  Their seemingly lack of compassion towards the daily nuances HIV brings could be more of a testament to the strength you've shown throughout all these years.

        I would never think to tell you that you are fortunate to have the relationship you do have, because I sincerely believe it should be a given.  But I will say firsthand, the bitterness one feels from family who chooses never to communicate drives deep.  It's molded me in ways I really do not care for.

         

[mitch777]

Um, wow. You all sure know how to lighten up my load when I need it. I want to adopt you all.

This was the first time since soon after my diagnosis that I had such a deep discussion about my health with my sister. Most of my years being poz were pretty healthy ones.

I think Skeebo hit the nail on the head. I guess they might have seen me as being strong and not so much in need for so many years that life just kept plugging along for all of us. Living 1300 miles apart with very few visits along the years contributed as well. They honestly had no way to physically see my decline in the past decade. Sure, I would bitch a bit now and again about the malady-of-the-month but not too much.

I thought that by writing her a letter I would try to get her to understand how I'm doing now and that my needs have changed. I don't expect them to delve into the depths of HIV like I have to but if either of my sisters were to have a serious health issue I would take the time to research it enough to get a grasp on what they would be facing. I also know that they will never truly be able to put themselves in my shoes but walking along side of me to some extent would be nice.

Anyway, on to some good news....
My letter brought her to tears. Her reply brought me to tears. Stuff needed to be said and we seem to be understanding one another a bit better now. She said she never knew how much to talk about my health in fear that it would "drag me down". I on the other hand felt that if I talked about it too much I would be dragging HER down. Funny, but neither one turned out to be true.

Guess sometimes things needed to bubble to the surface, for me at least, to address the issue. Honest communication isn't always easy but it's better than sweeping everything under a rug. Hopefully we will be better able to talk more in the future. I think this was a good start.

Thank you all!

m.





 

[bocker3]

Mitch,

What a wonderful outcome!!  It is amazing how a simple discussion can actually set aside angst.  I am notorious for having discussions, in my head --playing both parts -- rarely does the other side look good in those internal conversations.   
Assumptions can be our undoing -- I am so glad you and your sister talked through yours.
I love happy endings.........

Hugs,
M

[mitch777]

Thanks Mike.

Not so sure about a happy ending but we're on the right track and moving forward.

hugs,
m.

[oksikoko]

My letter brought her to tears. Her reply brought me to tears. Stuff needed to be said and we seem to be understanding one another a bit better now. She said she never knew how much to talk about my health in fear that it would "drag me down". I on the other hand felt that if I talked about it too much I would be dragging HER down. Funny, but neither one turned out to be true.

Neat! Just in time for the holidays, if you go for that sort of thing.

[mitch777]

Neat! Just in time for the holidays, if you go for that sort of thing.

LOL.

[OneTampa]

Mitch, I am so pleased to read that you have started on an positive enlightened journey with your family.

This threaded discussion has also helped me.

Thanks everyone.

Best.

[mitch777]

Mitch, I am so pleased to read that you have started on an positive enlightened journey with your family.

This threaded discussion has also helped me.

Thanks everyone.

Best.

Families are all so different and I kinda knew it would work out this way but it took awhile for me to bring it all up. I tried to approach it all knowing the limitations. Feeling better.

I am trying to learn how to keep things from building up. Emotions can reek havoc and lately my emotions have been doing allot of reeking. lol. Balance within myself has been my mantra since diagnosis and it's a never ending challenge. Lots of slipping and sliding along the way. I just get so tired of the BS and lack of honest talk. Don't get me wrong, kidding around and laughter lightens up anyone's day but there needs to be real moments along the way or it's all fluff.

[Theyer]

Families are all so different and I kinda knew it would work out this way but it took awhile for me to bring it all up. I tried to approach it all knowing the limitations. Feeling better.

I am trying to learn how to keep things from building up. Emotions can reek havoc and lately my emotions have been doing allot of reeking. lol. Balance within myself has been my mantra since diagnosis and it's a never ending challenge. Lots of slipping and sliding along the way. I just get so tired of the BS and lack of honest talk. Don't get me wrong, kidding around and laughter lightens up anyone's day but there needs to be real moments along the way or it's all fluff.

oh yes indeedy

[Fisher]

Family, my brothers have always been a great disappointment. My parents died fairly in early in my life. There's always been a hope and long for with family, and the usual disappointment during the holiday seasons. So after ages of struggle, except for the holiday visits, I've come to find my family elsewhere.