When Someone You Love Has AIDS

[Godiva]

I have been told that the boyfriend of a very good friend of mine who was HIV+ has now has developed AIDs. I suspected about a few months ago when we were all out for dinner but no one said anything so I respected his privacy..This saint cut everyone out of his life, including family because he did not want anyone to know. I love this man because he is a caring individual who has always been there for the many people who have passed his way. I have heard the pressure is getting to the boy friend along with the financial aspects. I have never known anyone with Aids. I want to contribute some how but I don't know where to begin. I would love to contribute financially to buying his medication but I don't know what to buy.. They don't know that I am aware but I don't think they would be mad now that his situation has progressed. I will pay them both a visit soon.. I am not afraid of the ignorance and my only regret is not doing all I can. I would spend weekends with him because I know he would do it for me .

 

I have started to read up on this so I can understand and be on call if they need me. I have heard that having this disease makes friends afraid and they tend to dissappear. I want to be there for them both.

 

Has anyone had to deal with this situation? I would love for this to be both informative and educational. I did'nt know if I should bring it here but I do believe in the wisdom occupied by many here at the Message Center. It would make it easier to converse with others who have edured this dreadful disease.

 

Any Websites, Books, Phone Numbers..anything you can contribute.. and as with all of my posts(well maybe not all:-) )I hope we can all learn from the vast wisdom and rescources posted here.

 

I know this is somewhat a heavy subject but don't you frett:-) I have a lame one comming soon.

 

Thanxs in Advance Guys and Kathryn

G

[Guest JON1265]

This is a reminder that AIDS is still killing people....thanks for the jolt back to reality.

 

I guess the best thing to do would be to ask them what they need. I don't see how you are going to help them without talking with them first. I don't know what area you are in but there are many AIDS organizations in many areas now that help with meds, housing, insurance, hospice care, etc.

 

Try the INTERNET or your local gay paper for any groups or oragnizations.

 

I lost a dear friend 3 years ago this upcoming December 30th. His name was Steve McCloud - these people must not be forgotten.

 

Good luck - you're a good friend.

[phage]

Godiva,

 

This is indeed a heavy subject. I’m 42 and came out in the late 70’s. That means that my friends and me were in our horny 20’s when we didn’t even know what caused AIDS. (I remember reading the local San Diego rag that had an article about the “gay flu.” I was convinced that poppers caused it!) Bars and bath houses at least two or three times a week meant that five of my six closest friends picked up the virus. None of them made it to their 35th birthday and I’ve dealt with illness and death more than I care to think about.

 

There is a ton of technical and clinical information available on the web – everything from government to gay sites – so I won’t even go there.

 

Some things to think about in your situation.

 

You say “They don't know that I am aware but I don't think they would be mad now that his situation has progressed.“ Tread very carefully my friend. It sounds like this couple has gone out of their way to keep this situation private. That could be for a number of reasons. They may just feel that it is a very personal matter, but they also might be trying to maintain a “disease free” zone. A group of friends…a “place”…where they can be and not have to think or talk about the disease. It becomes an ever present “thing” in your life and it’s good to have some place where you DON’T think about it and just LIVE what’s left of your life.

 

You also said “I have heard that having this disease makes friends afraid and they tend to disappear.”

 

Of course reactions vary. A lot will depend on the age of your peer group and their experiences with AIDS and death in general. They would have to be pretty ignorant to be afraid of the disease itself, but most everyone fears death, or more specifically the process of dying. My own experience is that it becomes overwhelming. I was never fearful, but there were times that I just didn’t think I could go through another deathwatch without losing my mind.

 

My last thought before this gets too long is…don’t assume that just because his clinical diagnosis has changed from HIV+ to AIDS that he is at death’s door. Doctors use indicators such as T-Cell count or the presence of an opportunistic infection (OI) to make the diagnosis. That doesn’t mean that he won’t be able to fight off the OI’s for quite some time. However, it does sound like you have noticed a physical decline.

 

It’s wonderful that you are concerned, committed and want to be knowledgeable. Go slowly and save some strength for the later phases. I won’t lie…it gets very tough towards the end. Your friends will need you then and there will many opportunities to support them.

 

Good luck.

[+ Lucky]

"I have never known anyone with Aids."

Godiva, I appreciate that you are approaching something that is new to you with care and compassion, and I laud your effort to learn all you can.

Unfortunately, I am one of those people who has known over a hundred people with Aids and has been through the deaths of so many. I was thunderstruck at your statement that you did not know anyone.

This is a good example of the disparity among the users of this board, and hopefully you will receive good information.

Please don't take this as a dig, but I would encourage closeted people, as you say you are, to participate to the extent that they can in supporting the struggles the gay community has undergone, including this more than 20 year battle with Aids. You, (the general closet-challenged community) can't just take the good stuff and leave the rest of us to pave the way for you.

Good luck with your friend. My advice: kindness, not pity.

[mmk]

Godiva,

I think thatist is very admirable of you to want to continue your relationship with these two friends, however, as Phage said, just because your friend has been diagnosed with AIDS does not mean that it is a death sentence. If your friend starts the triple combination therapy, or "cocktail" as it is called, his viral load could go to zero despite how high it is. I dated a man who is HIV positve and had a viral load of over 700,00. This was in 1997. In the summer of that year he started on that therapy and is healthier than ever and for years his viral load has been at zero. Looking at him you never would have thought that he was HIV positive (he is 6ft, 4in and a very muscular swimmers build). When we met he was very honest and open with me upfront and I learned quite a bit about AIDS and being HIV positive.

For those of you who do not know (and I am surprised that in the gay culture that there are so many people who are very ignorant of just the minute detail regarding this disease), the triple combination therapy is a combination of drugs that people with HIV take. There are two types of drugs that are taken, Combivir and Crixavan. (Combivir is a combination of two drugs whose individual names escape me.) Combivir is take twice a day and Crixivan is taken 3 times a day. These drugs can cause side effects(which depending on the person it can take possibly up to 6 to eight months before the body fully adapts to these medications). The side effects can be diarhea, vomiting, upset stomach ets.

However, most insurance companies do cover these medications. Depending on a persons co-pay, the amount they would pay for both of these drugs would only be anywhere from 10 to 30 dollars as opposed to the almost whopping 1000.00 dollars it would cost per month if you paid out of pocket.

Now Godiva, if your friend does not have insurance, then possibly his partner's insurance might have Domestic Partner benefits, which would entitle your friend to all of the insurance coverage that his partner would have. And if neither of them have insurance, there is federal aid that is available that would pay for his medication (some states have a greater amount of dollars available to them than others). Any type of AIDS Awareness group, gay/lesbian supposrt organization, etc would have plenty of info on where one would be able to apply for this financial aid.

I guess my final question for you Godvia is how do you know? If you are going by physical side effects, it is possible that he might be suffering from something else that exhibits some of the same side effects as someone who is either HIV Positive or who has AIDS. Side effects are not always an indicator and I do think that in our sometimes rather unsympathetic gay culture, wrong conclusion are jumped too and then spoken very loudly and to anyone who will listen.

 

Your best choice Godiva would be to learn as much about HIV and AIDS as you can. Please remember that the only questions that are stupid are the ones that are not asked. There are many educators out there who have talked to and taught millions of people about this subject and are more than willing to do so for the many more millions who either ignore it and feel that "I will never be affected by this" or who are afraid to ask for fear that they will either look stupid or that others may cast a suspicious nod their way for wanting to know so much about this disease. This is a subject that every gay man (or every man who has on the side sex with men and then goes back home to their wife or girlfriend) should know about inside and out. (Okay, I am off my soapbox now. Time for a cookie.)

[OneFinger]

Godiva,

 

This is similar to a situation I had a few years ago when a good friend was diagnosed with AIDS. He shut people out of his life, didn't announce he was sick, and basically tried to become a recluse. Phone calls went unaswered, he "pretended" not to be home when we'd drop by for a visit, and there was very little we could do about it.

 

A number of us discussed whether to confront him and tell him we knew. However, an AIDS support group suggested the last thing he needed was a confrontation. We kept mum but tried to remain positive and supportative during those rare times when we did see him.

 

As far as helping with costs and medications, I encountered this same situation when my father was ill. His Medicare supplement didn't cover prescriptions so all his medication costs were out-of-pocket. I offered to help but he kept turning me down.

 

I finally went to his pharmacy and gave them my credit card number. Since Dad always paid in cash, the pharmacy told him he got a 25% to 50% cash discount (depending on the cost of the drugs). The "discount" was charged to my credit card and Dad had no clue.

 

I arranged with his doctors for his "co-pay" and non-medicare expenses to be paid by me. Did the same thing with the hospital bills. Again, the bills never went to Dad so he assumed it was all covered by Medicare.

 

I worked with his insurance agent and prepaid his house insurance. Also prepaid property taxes for his home. He didn't seem to notice that most of his "once a year" payments went away but he did notice he had more available cash. You wouldn't believe how his quality of life improved when he didn't mentally calculate the cost of every pill he took.

 

Hope these suggestions help. Good luck with this very tough situation and for being willing to assist.

[Guest AdamLVescort]

Godiva,

My hear pours out to you right now. I have met men with aids/HIV+ but I have never had a close friend in your situation. After reading all of these wonderful posts I am about to cry my eyes out. You guys don't know how many of us don't really know about this virus. I actually feel bad for not knowing because its a major killer in our world. My advice is to stay strong, be the best friend you can be, and follow the wishes of your friends. This honestly has sparked some interest in my head to find out more on whats going on in my community. As a gay male I think I might be able to help others and have a part against the fight. Thank you for warming are hearts and reminding us that these threats still exist.

 

Sincerely,

Adam

[Guest mellowdad]

" be the best friend you can be " (and) " follow the wishes of your friends." This is significant wisdom from a very young person.

 

My first "disclosure" came in a magazine article describing the illness of a college friend whose wedding I participated in 27 years before. I had no idea he was gay, and knew little about HIV. I didn't know he wasn't still married. I spent 9 months planning to call him, and avoiding it out of fear. Finally, I located a number and called him . . . "I learned about your illness 9 months ago and was afraid to call you." He said simply, "I understand how hard it must have been for you, and I'm glad you called today." He died two months later. Now, I teach about HIV and AIDS to college students, as a clinical and social issue in the context of a basic science class for nonmajors. I'm continually startled by their ignorance, and moved by the gratitude of students who discover first-time clarity about what is HIV, what is AIDS, how they are related, and how to prevent HIV transmission. As for basic education and involvement opportunities, most cities have one or more agencies who help HIV-infected people, and these will be a good place to start. A web search would likely turn up a lot of helpful information. Adam and others, good luck in your quest for clarity. :-)

[Guest happyguy]

hey one finger

you are one fine man ... I never thought of doing what you did. You are proof that, so often, out of a truly bad situation, all sorts of good things come out. Thanks for being you!

[+ Charlie]

Reading your post actually knocked the wind out of me, since I hadn't realized that anyone sophisticated enough to use this site regularly would have no personal experience with AIDS. I have buried about a hundred friends over the last twenty years, and have only two good friends who are longterm survivors thanks to the new drug cocktails.

 

Your immediate reaction to want to help is admirable, but it seems clear that your friends don't want help at the moment: they need space and time to come to their own conclusions. Perhaps their desire for privacy is temporary, perhaps it will be permanent. If they don't wish to discuss the situation, it is their right and you should respect that. You don't know exactly what the medical or financial situation is, and to make offers without being asked may alienate them emotionally as well as physically, since it implies they have lost control of their lives as well as of their privacy. One of my dearest friends cut off all contact with me and other friends during the last two months of his life, despite my repeated offers of help, because he didn't want to be remembered as helpless and wretched after he was gone. It hurt me very much, but I understood and didn't love him any less for it, and he knew it.

 

You might want to simply tell your friend, "If you are having problems, whatever they are, you know you can always call on me," and leave it to him to decide how he wants to use that offer.

[Bilbo]

When my last husband got AIDS, he went the route of not wanting anyone to be sad when he died so he tried cutting off all of his relationships, even tried to get rid of me. I simply didn't let him get away with it.

I don't want too much optimism to cloud any judgements, but many of us older guys who knew gazillions of people who died from this disease - well, that was before we knew a lot of what we know now. People did die in droves, but a smaller and smaller percentage of people who have (and especially those who are just getting) it don't die as quickly any more.

When you know that you have a terminal disease, one of the first natural reactions is to get ready to die. But many people who have done this realize after a couple of years that they aren't going to. That they have a lot of time still to go before they get to transition to Heaven. Then they have to get ready to live again. It really would be easier if they could skip that first part and just stay ready to live.

And this is where I see you personally coming in. Don't let them chase you away. And don't quit effervescing around them. (Come out of your closet and be the happy gay queen you are - that would really help them, I think.) Raise, do not lower (but don't get plastic) the happiness quotient around them. Make sure their holidays are holidays!

(I would try to get your friend into a good gym. There are very gentle but effective gyms that specialize in PWAs (people with AIDS). A lot of times when they lose weight, they lose their muscle weight

first, unfortunately.)

It was thought, and as far as I know it still is, that a positive outlook on life was one of the determining criteria for those who were naturally long time survivors without drugs. So, in the hoary old words of the Readers Digest, "Laughter is the best medicene." (or one of them.

[+ Lucky]

We have had threads before where some people freaked at the idea of having sex with someone who has HIV. Those discussions were based on a lot of fear and ignorance. I, too, had not realized that younger guys didn't know "all about it."

So this thread has been one of the best we have had since I started posting here in March 2000. Sharing information and education, clearing up misinformation, it's great. Now, where's my condom?

[Guest Tampa Yankee]

You might want to simply tell your friend, "If you are having problems, whatever they are, you know you can always call on me," and leave it to him to decide how he wants to use that offer.

 

Excellent advice Charlie... offers help and support on the terms of those affected.

 

Godiva,

 

I have had a similar occurence in the past month... a friend of a friend who as AIDS in an advanced stage --disease/drugs already affecting his sight. From what I understand, this case blossomed almost immediately from the initial HIV infection (2-3 years ago) into full-blown AIDS. All drugs seem not to have been effective in this case. This individual seems to have given up hope.

 

I mention this unusual case for the information I obtained from my personal physician, an infectious disease specialist who is the 'gay medical resource' in a univeristy medical facility.

 

The instances where no drugs seem effective are very few. There are new drugs being approved -- the FDA approved one the week before I sought this information. There are also drug trials in progress that some individuals may be candidates for depending on the specifics of their case history. The message is that no one should give up hope (this is easy to say, I know). It is important that their health provider be 'plugged into' the AIDS research medical community -- that means having a doctor who is associated with a university AIDS research program which is where the action is on AIDS research. So says my doctor.

 

I passed this info on to my friend along with an offer of support. Seems the most pressing battle for the moment is the psychological one -- I hope it can be won.

[BuckyXTC]

Godiva:

 

Thanks for caring for your friends. I have nothing to add; the best and brightest of the Message Center crowd have offered so many thoughtful and considerate suggestions.

 

And to those who've taken the time to offer all this good counsel to Godiva: thanks a million. Still some very nice, thoughtful, caring people here, with very sound suggestions.

[Guest WetDream]

I echo the comments of the previous posters who were shocked that a young person, especially one connected even tangentially with the gay world, could be in the dark about HIV and AIDS. It has been part of my world for so long. That said, I still remember the shock I had when two very close friends died from it during the same week. Although that was almost 20 years ago -- and there have been so many since then -- the loss of these men still lingers.

 

First off, Godiva, you owe it to yourself to find out as much as you can about this diesease. Other posters have already pointed you in the right direction. Second, build a sense of loving support for your friends so that, when they are ready they will know that they can count on you for whatever it is that they need.

 

One thing that is very important to remember: there should be no shame attached to being HIV+ or having AIDS. It is a disease, not a moral failing.

[Guest Stefano]

First off I must say that I along with Bucky am pleased to see that the heart and soul of this message center still thrives.

 

As for HIV/Aids...I am on the verge of loosing my mentor from childhood due to this disease. Since I took gymnastics with him from age 10 I admired every aspect of his being. He is such a beautiful person. But the fact is I really cannot offer more than my heart and prayers to him. Well there is alot I could do but the point I'm trying to make is that he must be open enough to tell me when he is in pain, when he is not doing all that good, and when he is feeling great. As his friend I am here to talk listen laugh cry and love.

 

I guess my situation is a little different from yours as you have not been told about your friends progression. My friend on the other hand is a bit of a crusader to young and old people that are ignorant of the disease and it's affect in our world. It hasn't dissappeared and is still a force to be dealt with. For those who are "in the dark" I really hope you try and shed some light because ignorance is what keeps this disease growing and taking our friends and family.

 

My heart really does feel for and with you Godiva..

 

With Love,

 

Mike

[Guest cmp]

My heart goes out for you and your friends. I'm moved both by your original post and by everyone's response.

[Godiva]

Wow...where do I begin...

 

Jon1265..your friend Steve McCloud would be proud to know that you haven't forgotten his name and now the many posters here will cherish him also..thanxs for that personal touch.. mmk..the boyfriends sister told me because he has been borrowing money from her and she is worried that he is about to have a breakdown. Onefinger..just what I was looking for.

 

phage, lucky, happyguy, AdamLvescort, mellowdad, Charlie, Bilbo, Tampa Yankee, BuckyXTC(Thanxs Again and I will..),Wetdream and Stefano..thanxs for your posts..

 

The wisdom generated here is the best medicine a Doctor could order. I am reminded why I began posting here a long time ago. We must remember that the age of this message board runs from the very young and niave to the very mature and wise. Not everyone is at the same stage in his or her sexuality..Whether one is straight,Bi, Gay, in the closet.. is completely irrelavant...What is relevant is that I want to help my friends in any way possible and I will regardless where I personally stand on the specturm of sexuality..

 

The circle of friends I hang with mean no Ill will. Perhaps a little immature but they mean well. I few of you have expressed shock over the fact that some of us haven't had the experience with this disease. I have recently started to explore my Gayness..as recent as within the last 2yrs. Prior to that my only connection, as a major sports fan, was Magic Johnson..The only time now when you hear about Aids outside of the community, is when there is a concert or a program affiliated with a known Aids Organization. You will find the young ones in this generation may never see or understand some of the things I believe that mellodad has shared with us in his poignant post. There is no right or wrong but it is just the way that it is..

 

Some have told me to wait it out and tread softly and I will..It is hard tho because about 15yrs ago a friend of mine had cancer..Her husband..at her request, kept this from all of us including her family. When we finally found out... she had 3 days to live and she couldn't speak. I have never forgiven myself for not being there sooner and maybe pushing the issue. It hurts to this day deeply. Her parents are just as angry.

 

So when this happened I don't want a repeat of that dreadful experience...I will get through this..as we all have..and after reading your amazing replies I feel a little stronger..I hope to one day show my friend this post so he too can bath in the wisdom you all have so eloquently showered on me.

 

As usual..you guys are amazing..Keep posting with more advice on the original post.

 

honored to be amongst you...

G

[Guest Kevin 2]

This thread speaks volumes for the posters here. We really do have some wonderful people on this board. I wish you and your friend the best of luck during such a trying time.

[Guest Zach DC]

I'm sorry to hear your friend's boyfriend has AIDS. But it's great that you want to offer support.

 

You've found some good advice here. AIDS is not a dirty word. It's not a subject to avoid discussing. Just the opposite. We need to talk openly about HIV/AIDS -- and not just on internet message boards. Godiva, be comfortable talking with friends and family about this disease. Be comfortable talking openly and honestly with anyone face to face.

 

You'll find excellent information at your local Health Clinic. They also offer seminars and support groups to enlighten you about HIV/AIDS and PWA's.

 

Your friend may wish to keep his illness from you. Clearly, that's his cloice. The best you can do is show that you're there for him -- you're comfortable talking about AIDS on a personal level -- and you're ready to offer support.

 

Zach DC

[Guest JT]

>You might want to simply tell your friend, "If you are

>having problems, whatever they are, you know you can always

>call on me," and leave it to him to decide how he wants to

>use that offer.

>

>Excellent advice Charlie... offers help and support on the

>terms of those affected.

 

I'm in complete agreement here!

 

 

>The instances where no drugs seem effective are very few.

 

This is true so far. However, we have been seeing the emergence of multi-drug resistant strains of HIV in increasing number of patients in North America. These strains can potentially change the course of HIV/AIDS epidemics drastically.

 

 

>There are new drugs being approved -- the FDA approved one

>the week before I sought this information.

 

Despite the success of the highly active anti-retroviral therapy (HAART involves the use of drug cocktails consisting of 2 nucleoside/non-nucleoside RT inhibitors and 1 protease inhibitor)in reducing viral load in the blood, there are serious harmful side effects associated with the drugs. Some patients do not comply with their treatment regimen due to the toxicity of the medications. The toxicity of the currently available anti-retroviral drugs and the emergence of HIV strains that are completely resistant to them have led to the search for less toxic and more effective alternatives. While some progess has been made, we're still too early to say there is a major breakthrough.

 

 

>There are also

>drug trials in progress that some individuals may be

>candidates for depending on the specifics of their case

>history. The message is that no one should give up hope

>(this is easy to say, I know). It is important that their

>health provider be 'plugged into' the AIDS research medical

>community -- that means having a doctor who is associated

>with a university AIDS research program which is

>where the action is on AIDS research. So says my doctor.

 

It's a worthwhile effort to find out whether a person with HIV or AIDS is eligible to participate in one of those clinical trials. This is especially true if the person has no or inadequate health insurance coverage. As an enticement and part of the study design, medical/health services and free drugs are made available to study participants. The quality of care is often very high. More details concerning these clinical trials can be found on websites such as those of CDC and NIH. In Canada, similar information may be obtained from the Canadian HIV Centre for Excellence Clinical Trials Network.

 

 

JT

[Guest Tampa Yankee]

JT,

 

Thanks for your amplification of my second hand information with your direct informed knowledge.

[Guest JT]

Dear Godiva,

 

May I suggest that you give your friend and his bf some time and space and wait patiently until they feel it's the right time to share the news with you. In the meantime, I'd recommend you to get yourself familiar with the disease and the resources that are available to people living with HIV/AIDS in your/their community. Such information can be very useful later on.

 

 

>Go slowly and save some strength for the

>later phases. I won’t lie…it gets very tough towards the

>end. Your friends will need you then and there will many

>opportunities to support them.

 

What phage said is so true. At the end stage of AIDS, the physical appearance of individuals can change so much (for the worse) that sometimes it’s hard to believe they are the same persons whom you once know. It always breaks my heart to watch them (friends and patients) struggling with the various opportunistic infections and cancers that gradually eat away their body and mind. Personally I think those are the tough times that your friend and his bf would need you the most. Be there for them. Be there to provide whatever (emotional, spiritual, physical and/or financial) support you can. Every small gesture on your part could go a long way in making a better day for them. Bring them flowers to brighten up their day. Share with them jokes to cheer them up. Read a book or magazine aloud to your ailing friend. Say a prayer with them. Lift up the pillows to make him feel more comfortable. Or just hold their hands and sit with them quietly beside the hospital bed. No matter what you do, you need resolve and strength (both emotionally and physically) to be there with them every single step of the way. And the resolve and strength will only come from one’s true love, care and empathy (but not sympathy or pity) for the ailing individual (of course, being informed of the disease also helps to a certain extent).

 

Godiva, thank you for sharing such a personal story with us. Your desire and willingness to help as well as your caring attitude are truly admirable.

 

Best wishes,

JT

[OneFinger]

HG,

 

Thanks for your kind words. It's been my experience that ordinary people can do extraordinary things when love is involved.

 

Wish I could take credit for thinking up the different ways I was able to help out my Dad. But, in reality, all I did was copy what I saw someone else do years ago with an AIDS patient.

[Godiva]

Again thanxs a bunch for the wisdom shared here over the past few days..

I have a few questions I'd like to ask on behalf of the silent minority and inexperienced. There maybe a varitey of answers....I encourage them all so the viewer can make an informed choice..

 

 

How often should one get an AIDS test?

 

Are they reliable?

 

Are they confidential?

 

Should you get a second opinion with another doctor or clinic?

 

 

Thanxs Again

Godiva