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Author Topic: My Brother is HIV+ and he doesn't want to take treatment  (Read 5001 times)

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Offline SupportiveSister

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  • Posts: 4
My Brother is HIV+ and he doesn't want to take treatment
« on: January 17, 2012, 09:09:56 AM »
Hi

I'm hoping someone here can help me... I just found out that my baby brother is HIV+, literally an hour ago. He told me and when I asked him if he's taking treatment he said he isn't and he doesn't plan on taking it since it just makes it worse.

I don't think he's told anyone, I am presumably the first person he told and I don't know how long he's known. I don't know what to do. I don't want to suffocate him with love and get all emotional about it and make him regret telling me but at the same time I feel that there's a reason why he told me, he perhaps, deep down, wants me to meddle. He hasn't told my family and I don't think he's going to (anytime soon).

I have an urge to tell my mom, she's in the health profession and has done a lot of research of AIDS and HIV and is more suitably equipped to handle this situation, because at the moment I don't know what to do. Although he didn't explicitly tell me not to tell my mom, I do feel like I'd be betraying him if I did.

When he told me, I was calm and told him that this is manageable if treated but left untreated it's not. He just said, he going to die and he's given himself maximum 10 years, he's supposed to be going to varsity but isn't, because he said what's the point? I think he's depressed just that he can't verbalise it. He's just joking about it and I guess that's his coping mechanism.

What do I do? Do I tell my mom? How do I convince him to at least entertain the treatment option? Is it even a good choice? To make matters worse, I'm moving to a different city in 6 days so I need to get on top of this now... I can't leave him like this

Supportive Sister ♥

Offline Valmont

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  • Posts: 333
Re: My Brother is HIV+ and he doesn't want to take treatment
« Reply #1 on: January 17, 2012, 03:12:28 PM »
Hi Sister...

Your brother is not going to die.  We are lucky to live in a time an acces to good medecines with little side effects exists.

It is always a big shock for anyone to know about being infected by HIV, for the "victim", his familly and friends; and it may need some time to accept it.  It is usefull to be helped, by an ASO, or a professional. 

A treatment is not always necessary when some one is infected at the beginning, but there is a time when immunological system start to fail, it is necessary.  Your brother should have tested his CD 4 and Virus Load levels (first define the concentracion of CD 4 celds, those are attacked by HIV, and virus load give an idea of the concentration of virus in blood).  Those number can give an indication if your brother needs to start (or not) a treatment.  It is important to start having meds before the immunological system star getting bad, many time this can happen and the infected person feels completelly well, but is exposed to many infection that can kill him.  But if his numbers are good, he can spend many time without meds...

For many people here, having to take a treatment may be a big shock and change too, you have to be patient and supportive, try to make him feeling well, loved and care.  The best is to try to be the same as before, he is still the same person too, no?   

Don´t take decision for him, let him talk with your mother or who he wants when he decides it to.  Don´t presure him.  The fact you move won´t make you less supportive.  Tell him what you feel to, but try to be positive.  Tell him about this forum, people here is very supportive and knows a lot, in my case it has helped me a lot.

Welcome here, all the best for you, you´ll see very soon tat life almost won´t change for that, but sure, the days you are living might be very very sad...

My kind supports to you...



 
Apr 2011: Diagnotized
Jun 2011: CD4: 504  VL: 176.000
Dic 2011: CD4: 714  VL: 95.000
May 2012: CD4: 395 VL: 67.000
Jun 2012: CD4: 367
Agu 2012: Starting Emtricitabine 200 mg / Tenofovir 300 mg and Efavirenz 600 mg (2 pills) different brands or VIRADAY/ATRIPLA/Mylan....
Sep 2012: VL: 138
Dic 2012: CD4: 708 VL: <34  %CD4: 32%
Jan 2013: CD4: 707 VL: <20
May 2013: CD4: 945 VL: <34 %CD4: 33%
Agu 2013: CD4: 636 VL: <34 %CD4: 50%
Dic 2013: Latent TB, started Isoniazid

Offline BorbaColen

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Re: My Brother is HIV+ and he doesn't want to take treatment
« Reply #2 on: January 17, 2012, 06:47:16 PM »
You are already doing so great, keep that in mind.

Finding out that we have hiv can be really difficult, and facing it the way it should be faced can take some time, specially if surrounded by prejudice instead of love. Try to understand that, altough you seem aware of. Like Valmont said, we are lucky to be hiv + right now, and not in the 80s. Your brother is NOT going to die soon.

You can try talking to him about just visiting a doctor or some psicologist, just to talk about it. Maybe they can at least convince him abut testing cd4 and viral level, thats really important. This forum is also a great great place to start discussing it.

Sending good energies, keep us updated ;)
sorry for bad english  :P

Offline Joe K

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Re: My Brother is HIV+ and he doesn't want to take treatment
« Reply #3 on: January 17, 2012, 10:30:55 PM »
Dear Sister,

I'm sorry to hear the news about your brother and the best advice I can offer, is to tell him you love him and you will be there for him.  After that you need to stand back and let him find his own way in the beginning.  Becoming poz is one the greatest challenges one will ever face and there is no right or wrong way to adjust.  His head is spinning right now with all kinds of thoughts and feelings and most of his comments are just a way of letting off some steam.

Right now, the best thing for him is to allow himself to feel whatever he needs to feel without the need to do anything about anything.  Your role is to provide unconditional love and to respect his wishes in keeping his confidence.  He just needs time right now, to begin to adjust and you can support him best by letting him know that you are there for him, in whatever way he needs you.

Give it some time, I promise, it will get better.

Joe

Offline spacebarsux

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  • Posts: 1,350
  • Survival of the Fittest
Re: My Brother is HIV+ and he doesn't want to take treatment
« Reply #4 on: January 18, 2012, 01:24:43 AM »
Hi Sister,

You've already got some sage advice.

I agree that you shouldn't violate his trust at this point. Even though you mean well, if he were to find out you've disclosed to your mom without his consent he may get deeply hurt at a time when he's already feeling very vulnerable.

Best.
« Last Edit: January 18, 2012, 01:27:25 AM by spacebarsux »
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline mecch

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  • red pill? or blue pill?
Re: My Brother is HIV+ and he doesn't want to take treatment
« Reply #5 on: January 18, 2012, 04:32:12 AM »
Supportive sister:  all in due time.  Maybe he is still in shock.  Almost all people with HIV come around to reality eventually. 

We don't know whats in your brothers head and we dont know anything about his health or length of infection.  There is no way to judge if your immediate need to worry about his refusal of treatment is useful.  There is no way to judge if its his time for treatment.

Also, how old are the both of you, if you don't mind me asking? Going to varsity?  He's in High School?

Don't tell you mom.

A constructive reaction might be to encourage him to learn about HIV and to monitor his health.  You can learn about HIV too. 

All in due time.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tinab81

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  • Posts: 1
Re: My Brother is HIV+ and he doesn't want to take treatment
« Reply #6 on: January 18, 2012, 09:29:08 AM »
Hi Sister,

I'm a first time poster and am sending lots of good thoughts your way. My 23 (in a couple weeks!) "baby" brother was diagnosed a month ago. At this point I would just chime in with everyone here and think you should just be supportive at this time. My own little bro will be starting treatment due to a low CD4 (230). You might want to find out how long he has known and ask if he's seen aZm specialist. I know my brother's really set his mind at ease. That said, no need to push him, he'll probably come along when he's in a better mindset.

For what it's worth, poz.com and The Body were helpful in bringing me up to date on developments in treatment.

I'm sorry you needed this forum but glad you found it. xoxo

Offline SANJUANDUDE

  • Member
  • Posts: 125
Re: My Brother is HIV+ and he doesn't want to take treatment
« Reply #7 on: January 18, 2012, 01:13:57 PM »
Hi

I'm hoping someone here can help me... I just found out that my baby brother is HIV+, literally an hour ago. He told me and when I asked him if he's taking treatment he said he isn't and he doesn't plan on taking it since it just makes it worse.




What do I do? Do I tell my mom? How do I convince him to at least entertain the treatment option? Is it even a good choice? To make matters worse, I'm moving to a different city in 6 days so I need to get on top of this now... I can't leave him like this


Your brother is wrong!!!!!  The treatment will not make his condition worse.  I will admit that for a week or so he may have side effects from the medication, but that will pass in a short period of time. 

How do you convince him.  This may be crass, but tell him about Sylvester, Robert Reed, and Rock Hudson, that should do it.

http://timehasshownme.com
10/2011-CD-4-598-Undetectable
01/2012-CD-4-758-Undetectable
04/2012-CD$-780-70 Viral Load
08-2012-CD4-846--20 viral load
02/2013-CD$ 865----20 Undetectable Viral Load
08/2013- CD4-898----<20 undetectable viral load

Offline SANJUANDUDE

  • Member
  • Posts: 125
Re: My Brother is HIV+ and he doesn't want to take treatment
« Reply #8 on: January 18, 2012, 01:14:52 PM »
I don't know why my last post came out looking like this, but sorry, it did..

http://timehasshownme.com
10/2011-CD-4-598-Undetectable
01/2012-CD-4-758-Undetectable
04/2012-CD$-780-70 Viral Load
08-2012-CD4-846--20 viral load
02/2013-CD$ 865----20 Undetectable Viral Load
08/2013- CD4-898----<20 undetectable viral load

Offline SupportiveSister

  • Member
  • Posts: 4
Re: My Brother is HIV+ and he doesn't want to take treatment
« Reply #9 on: January 18, 2012, 02:33:03 PM »
Thank you all so much for your kind words. It honestly got me through last night, I was a mess and on top of it I had the biggest exam of my life today (okay exaggeration but it was an important Honours exam). I just feel so much better right now, at ease, there are still brief moments where I ask myself "Did that really happen?" but I'm okay now.

So Valmont and BorbaColen I took your advice and he has agreed to come with me tomorrow to get his CD4 count checked out. I'm so happy he's coming, because at least that's a start and then professionals can take over in terms of advising him and giving him the correct information about treatment options.

Thanks Killfoile I will definitely give it some time and I understand that I should let him make his own decisions.

Mecch, I'm 22 and he's 19 and my parents are divorced and he's been living with my dad for the past 6 months. When I'm around my mom I now just have this inner turmoil cos she'll be complaining about something my brother was supposed to do and currently they're actually not speaking, because my brother was quite rude to my mom and obviously she's upset, because she doesn't know where this is all coming from but alas, I can't do or say anything.

tinab81 I'm also glad I found it, I thought no one was going to reply, I kept checking every 5 minutes and page views kept increasing and I thought "well just fan-freakin-tastic, you're all going to read and not reply >:( )  and let me deal with this by myself" but the responses have been much more comforting and helpful than I expected.

jamesd1967 yeah I don't know where he's getting his information from but I'm glad we're seeing a professional tomorrow and they can just give him the facts.

I think I need counseling too but I'll go at a later stage, I just want to be supportive and positive tomorrow and not bring up my concerns, because I don't want to break down cos that's the last thing he needs right now. I know the worst thing about telling people your problems is that you have to deal with their emotions too on top of your own and he doesn't need that.

Anyway thank you everyone, you're all so kind and supportive and really made me feel like I could actually do this and be a supportive sister.





Offline mecch

  • Member
  • Posts: 12,160
  • red pill? or blue pill?
Re: My Brother is HIV+ and he doesn't want to take treatment
« Reply #10 on: January 18, 2012, 03:31:32 PM »
I hear you about you needing your mom to know. Cause you need support. And also you thinking that your brother needs your mom. And you thinking that your mom needs to know or would want to.

But its up to your brother to tell who he wants to when he wants to.

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Valmont

  • Member
  • Posts: 333
Re: My Brother is HIV+ and he doesn't want to take treatment
« Reply #11 on: January 18, 2012, 04:03:47 PM »
So Valmont and BorbaColen I took your advice and he has agreed to come with me tomorrow to get his CD4 count checked out. I'm so happy he's coming, because at least that's a start and then professionals can take over in terms of advising him and giving him the correct information about treatment options.

This is a great news, the first important step to do...  I´m sure the doc will explair really well what means this change in his life and what to do...  You will see son, o so will he; that he is still the same and that he still will be able to fullfill his dreams, to study, to travel, to fall in love and so many more important things...

Your support to him in very important, particularly those days, at the beginning...  Be positive, this is not the end of nothing, listen to him, give him time and let´s wait about his lab results, proyect him to the future, past has no importance right now, particularly what has to see with his infection...
Apr 2011: Diagnotized
Jun 2011: CD4: 504  VL: 176.000
Dic 2011: CD4: 714  VL: 95.000
May 2012: CD4: 395 VL: 67.000
Jun 2012: CD4: 367
Agu 2012: Starting Emtricitabine 200 mg / Tenofovir 300 mg and Efavirenz 600 mg (2 pills) different brands or VIRADAY/ATRIPLA/Mylan....
Sep 2012: VL: 138
Dic 2012: CD4: 708 VL: <34  %CD4: 32%
Jan 2013: CD4: 707 VL: <20
May 2013: CD4: 945 VL: <34 %CD4: 33%
Agu 2013: CD4: 636 VL: <34 %CD4: 50%
Dic 2013: Latent TB, started Isoniazid

Offline emeraldize

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  • Posts: 3,365
Re: My Brother is HIV+ and he doesn't want to take treatment
« Reply #12 on: January 18, 2012, 06:09:21 PM »
Hey Sis,

First person I told was my older sister. She did not tell my mom. I was the one to tell my mom when I was ready. Your brother obviously trusts you -- fight against breaking that trust. You're in a very important role in his life. Your love and support are what's required. You and he will figure out what you need to do for each other and yourselves with each passing day -- just as you always have.

And someday, believe it or not, you'll recall this as a special time and find the bright spots, humor and benefits of having a sibling you love and trust. Also let your brother know that eventually Mom might say -- why did you wait so long to tell me? But, she'll understand especially since she knows a bit about HIV. Some parents like to be left out of things, but most moms want to be the go-to gal for the big stuff -- and this is, categorically, big stuff.

Em

Offline BorbaColen

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Re: My Brother is HIV+ and he doesn't want to take treatment
« Reply #13 on: January 18, 2012, 09:30:57 PM »
I'm SO glad to heart theses news, they are great!

Its really good to know that you guys have talked and both of you are going to see a professional. First time I went to the doctor, I went with my mom, and we both left the hospital feeling much better about this situation. I honestly think that is what is going to happen to you too. You are gonna find out that he is going to have a long and brilliant life, and he is going to learn how to deal with hiv. This is a first step, and you should be proud of yourself. You are doing great, a truly supportive sister.

Its also good to know that you understood that is up to your brother tell or not to tell to your mom, or whoever it is. This is really, really private, and he will tell when he is ready. He trusts you, never forget that.

Just keep sending your love and support to your brother, and we are gonna do the same to both of you. Keep us updated!

~Borba~

Offline SupportiveSister

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  • Posts: 4
Re: My Brother is HIV+ and he doesn't want to take treatment
« Reply #14 on: January 20, 2012, 02:32:02 PM »
So... We didn't go :(, he made up some excuses when I called him to pick him up and he wasn't there. Now I don't know what to do cos I leave on Monday

Now. Here me out. I'm thinking about telling my mom that he is depressed and she should try get him a psychologist to speak to. I'm not divulging anything and he genuinely is depressed and my mom has noticed his attitude and behaviour change. I feel that this is the only option cos he is on a self-destructive path at the moment and maybe if he agrees to talk to someone about his depression then that will perhaps give him a clearer head to make decisions.

I don't know  :'(. HELP! But just leaving him is not an option cos he is not okay right now.


Offline spacebarsux

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Re: My Brother is HIV+ and he doesn't want to take treatment
« Reply #15 on: January 20, 2012, 03:55:46 PM »
So... We didn't go :(, he made up some excuses when I called him to pick him up and he wasn't there. Now I don't know what to do cos I leave on Monday

Now. Here me out. I'm thinking about telling my mom that he is depressed and she should try get him a psychologist to speak to. I'm not divulging anything and he genuinely is depressed and my mom has noticed his attitude and behaviour change. I feel that this is the only option cos he is on a self-destructive path at the moment and maybe if he agrees to talk to someone about his depression then that will perhaps give him a clearer head to make decisions.

I don't know  :'(. HELP! But just leaving him is not an option cos he is not okay right now.



My mom found out about my diagnosis by accident. This was roughly 2 or 3 months after I learnt about my infection. I was extremely upset when that happened. I felt as if the little control I had over my life (and my privacy) was now also spiralling out of my fist. In addition to feeling like crap, I felt stripped bare at a time I was least mentally prepared.
 
It hurt me so much because I knew this would upset her and also because I felt I’d lost control over how and when I wanted to disclose to her- it was too late! I am also the sort of person who’s averse to too much concern and sympathy from family members- My brain somehow would process it as an added predicament (to an awful situation) for which I now need to summon up an appropriate response.  I prefer to handle my issues myself without involving others, unless I want them to be involved. Is your brother like this as well ?

The upside was that, eventually, after the initial trauma-she was most supportive and I realised some of my fears were unwarranted.
   
Obviously, everyone is different and every family is different- and each person deals with their diagnosis differently. But, I do think disclosure is something most people are very sensitive about- especially when the wound is very raw. When one is diagnosed it normal to be depressed and get sucked into a whirlpool of doom and gloom- but that feeling abates, in time. Please just give him some time, Sister.
 
Even though you have your brother’s best interest at heart, you cannot predict the ramifications of giving out any sort of signals to your mom. So, I urge you not to do anything hastily- unless you feel it absolutely necessary.
 
How about you talking to your brother directly and telling him to speak with a therapist (without getting your mom involved at this point) ?

Best
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline newt

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Re: My Brother is HIV+ and he doesn't want to take treatment
« Reply #16 on: January 20, 2012, 04:06:45 PM »
Well hello and sorry for your situation

Death from HIV is long and painful, or sometimes swift and painful. Treatment works indefinitely and you can lead a long happy life. Unfortunately there are many myths around about treatment. And the 10 years thing is also a myth. Many people will die within 2 years of infection without meds. As for varsity, a guy I know who got HIV in 1988 has just done his Masters, so there you go.

Last year, my 6th or 7th on meds, can't quite remember, I was the healthiest I have ever been.

An HIV diagnosis can be a big shock, but there is life if you can see it for what it is, and how good modern meds are. It's new for him, give it time. Dying from diseases of old age ain't nice, but dying young from HIV is nastier.

Perhaps the best thing for him to do is meet some really annoyingly happy and happening people with HIV on treatment.

- matt
« Last Edit: January 20, 2012, 04:08:38 PM by newt »
"The object is to be a well patient, not a good patient"

Offline SANJUANDUDE

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Re: My Brother is HIV+ and he doesn't want to take treatment
« Reply #17 on: January 21, 2012, 01:31:59 PM »
I hope he decides to recieve therapy.  I have known some people who have not gone on therapy and within four years, sadly, they were no longer with us.  The medications can and do work, which provide a normal lifespan.

http://timehasshownme.com
10/2011-CD-4-598-Undetectable
01/2012-CD-4-758-Undetectable
04/2012-CD$-780-70 Viral Load
08-2012-CD4-846--20 viral load
02/2013-CD$ 865----20 Undetectable Viral Load
08/2013- CD4-898----<20 undetectable viral load

Offline BorbaColen

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Re: My Brother is HIV+ and he doesn't want to take treatment
« Reply #18 on: January 21, 2012, 03:03:49 PM »
I'm so sorry to hear that, it really hurts me :(

You can try to talk to him again,and explain that you are going to a doctor just to talk ABOUT hiv, and how it works. Then, IF he wants he does some tests. It would really help both of you just talking to a doc.

If not even like that, what about introducing him to this forum? Its a no-risk situation, he can just talk to was, maybe we can change his mind. He does not need to identify himself.

I dont know about telling your mom he is feeling bad and should go to a doc. I mean, at first sight its ok, but maybe he will feel betrayed, angry or your mom is going to react not so well. Its really important for him to trust you, so you can help.

Feel free to PM me, send me an e-mail (borbacolen@gmail.com) or adding me in msn (borbacolen@hotmail.com).

Best

~Borba~

Offline SupportiveSister

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Re: My Brother is HIV+ and he doesn't want to take treatment
« Reply #19 on: January 21, 2012, 04:08:24 PM »
Hey guys!

So we had to go fetch something together today and I got to see him and spend a little time with him and talk to him. I just asked him if he's planning on going to get checked out and he said he will once things aren't as tense cos now he says he's found job to do, doesn't pay much but at least he'll have his own money and won't have to rely on anyone. So basically he'll go when he can which in my mind isn't any time soon.

When I asked him if he's planning on telling anyone who can support him anyone at all and he said that he isn't and he doesn't need people's support he's been just fine without it. He can deal with his own life, it is what is. And when he dies I can just tell everyone what really happened. Then I told him that I don't wanna be tasked with that cos it's killing me and I don't wanna feel guilty and upset when people blame me and say why didn't I get him help or treatment or why didn't I try more in this day and age, how I could I just let him die. Then he said that he's a grown man, he can make his own decisions, he didn't tell me cos he wants me to do something about it, he told me cos he doesn't keep any secrets from me and I know everything about him.

He says he has known since the beginning of the year so more or less 3 weeks now. Tried to make him see reason but he said he'll get tested when he gets the time to.

So that settles then. As hard as it is, I'll leave him to make his own decision and not tell anyone. It just saddens me that he's never received any counselling and just dealing with this by himself but if that's the way he wants it then I'll let him be. And I also thought, that maybe all this time I'm thinking about telling my mom and who knows maybe she won't have the reaction I want or expect.

So for now, at least for about 4 months, I'm just going to leave him to figure things out for himself then when I come home in the next 4 months try get him to get his CD4 count checked out if he hasn't done it.

« Last Edit: January 21, 2012, 04:10:38 PM by SupportiveSister »

 


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