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My Search for Support

| 11 Comments

As promised, I spent the first few weeks of this New Year searching for the right HIV support group. For someone like me, who doesn't quite "fit" the HIV "mold," this was a harder, more time consuming process than I thought it would be. The first organization I went to blatantly told me I didn't belong. Although they agreed to meet with me, and completed the first step of the intake process, they told me (repeatedly), that the participants at their program were not my peers. They told me that the women in their support groups had a variety of complicated issues, were much older than me, and "different" than me. While I did believe the intake coordinator was trying to be honest, and help me find a support group of my peers, I think she failed to acknowledge an important notion that HIV helps remind us of: we are all human. HIV, as my therapist once said, is the "great equalizer."

Although I recognized that the intake coordinator's unwelcoming advice to seek support elsewhere was unfounded, and I probably could have received emotional support from the other participants of the program, I decided to keep looking for a place where I felt more welcomed by the staff. (Also, the program was right around the corner from my ex-boyfriend's apartment. The ex-boyfriend who's infidelities exposed me to this disease, and who I haven't spoken to in months. An unplanned rendezvous with my ex on my way to or from a support group would be the furthest thing from support I could think of!)

Fortunately, I live in New York City, where the stores are open all night, anything can be delivered to your front door, and the variety of non-profit organizations providing support to the HIV community is bountiful, (when compared to other areas of our country.) So, with hope that I could find a place with a more welcoming atmosphere, and with knowledge that I could always go back to the first location if my efforts failed, I decided to move on.

The second stop on my support group "hunt" was at an organization that was founded in the early 90's to provide emotional and spiritual support services to those affected by HIV and cancer. As soon as I opened the door to support group#2, I could feel their welcoming arms wrapping around me. Rather than being told I didn't belong because of my background, race, class, etc., I was being welcomed by staff who were empathetic, warm, and caring.

My first experience participating in the support group, however, was not as emotionally satisfying as I had hoped. Because groups were open to anyone dealing with a range of life-changing events, such as death, caregiving, and cancer, a great deal of the group time was spent dealing with issues surrounding grief, loss, and mourning. While I could see the value in the way that the facilitator helped lift up the spirits of the participants around me, I couldn't help but feel like this group too, wasn't quite 'for me.' I tried to keep an open mind, take what I could from the facilitators' wise and comforting words, and see if the dynamic would change. When I went back for a second time, however, the same topics were discussed; death, loss, grief. While emotionally, I empathized with those dealing with the death of a loved one, and felt bonded to my fellow participants by the same overwhelming emotions we shared, another part of me just wanting to scream, STOP TALKING ABOUT DEATH - I'M NOT DYING!!

This time, however, instead of walking away, I decided to speak up. I formulated an honest, yet professional letter to the staff, explaining how I felt that the groups were not servicing the HIV population in the way that their founders set out to. I told them that I didn't want to always speak about death - but instead, I wanted to speak about life; life with HIV that is. I wanted to receive peer support and guidance around issues such as dating with HIV and dealing with stigma and disclosure, for example. In my letter, I suggested that at least one group (once a week, or even once a month) should focus on these unique issues that those of us living with HIV struggle with everyday.

So, I returned to support group #2, and walked to the front desk, with my letter tucked away in my bag. I asked if they had ever considered separating the groups, or providing HIV-only support groups, and they said that its "always on the table." So, with that encouraging response, I submitted my letter. They thanked me, told me it would be photocopied, distributed to the staff, and discussed at the next staff meeting.

About 4 days later, I checked my email, and opened a letter I received from the organization's director. He thanked me for my letter and informed me that it sparked quite the debate at their weekly staff meeting. He told me that after 20 years of combined group sessions, that were open to any one facing a life-threatening disease, they were going to begin having "focus" groups; one day a week would be dedicated to an HIV focus group; another day would be a cancer focus group; another day would be for caregivers, and so on. They emphasized the word "focus" and decided to still keep their open-door policy. Whoever needs help and support, can come in any day, and attend any group.

I felt as if I had just moved mountains! With one letter, one small voice, I encouraged an amazing organization to restructure its' services to better accommodate the needs of the HIV community.

Although support group #2 has yet to implement its' new schedule of support groups, just knowing that in the near future, I will be able to go to an HIV focus group, and get the emotional support I need at a place I felt so welcomed, is encouraging.

Based on my very limited experience so far with support groups, I put together a few words of advice I would recommend to anyone looking for peer support:

Don't allow yourself to be turned away by others' small-mindedness. Be willing to explore support groups where you may look, act, or even speak differently than those around you. (I don't mean to be hypocritical. I recognize that I walked away from this type of experience, but as mentioned above, I had other reasons that kept me away, and other resources available. And I still have a continuing internal debate about whether or not to return).

Speak up! If you don't like the types of services that are being provided, let someone know. Explain why you feel things need to change, and try to express yourself in as kind and professional a way as possible.

Don't give up. We all live busy lives, with plenty of distractions. Its easier, and arguably more efficient, to just get tired of the search, and continue with everyday life. But I have a feeling the emotional rewards will outweigh the difficulties involved in the process.

As my journey continues, I will try to take my own advice, and keep searching until I find the support group I need. Its hard not to let the paperwork, the time commitment, or an unfriendly staff member keep you away, but I believe peer support is an essential part of my 'medicine,' and I'm not going to stop until I find the right prescription.

11 Comments

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Comments on Anonymous's blog entry "My Search for Support"

Good for you and Kudos on agency 2 for both listening and responding

Well said,
You are stronger then you know. And it is better to voice your needs in the manner you did, then walk away angry. You actions helped others as well as yourself.

Cheers.

WOW! What a powerful letter. As you said - HIV/AIDS is the great equalizer! And the great empowerer! Keep that tenacity in all you do and you will be unstopable. Sometimes people just don't have the fortitude nor the energy to make a difference so it's up to those who can to do so. Congrats to you and to the agency that cared enough to listen adn HEAR what you had to say. Educate, Participate, Eradicate!

HI; I understand where you are coming from. My case is pretty unique. I have been living with this for approx. 9 nine years now, I just began meds this year. I take very good care of myself I read alot about this disease and I do research on how to live with hiv. My #s have constantly been very good, my viral loads approx. around 1050, my t-cells around 725-1025. But my last t-cell count on 12/2010 were around 435, but the vl was only 1064. My doctor and I decicied to start therapy. I live with this and I have not found a group that I can sit with to discuss things like how to stay alive with this condition. I want to live, I understand some people want to deal with death ect. But man I just want to learn how to stay alive as long as I can. It is hard to tell someone that you are hiv infected it's a stigma, it's not like telling someone you have diabetes. So I have live this way for approx. nine years and my support group is my wife who is negative, my daughter,my son and my doctor. Here's the punch line I just retired after a long career as a LAW ENFORCEMENT OFFICER who do you tell, nobody would want to work with you and by the way I got this while on the job. So yes I would love to talk about this with someone other than my family,But I have not found a group where I can just speak about how I feel.I have nothing negative to say. I chose my profession, it comes with the job. I would just love to speak with indivuals that have a positive way of thinking about this.To talk about nutrition and physical fitness. I just want to stay alive to see my grandkids. And maybe help someone who is going through the same thing. Thank You.

Thanks for sharing! I am an HIV+ woman who also recently finished grad school in New York and have been having a hard time finding a support group. I was really surprised by how hard it was to find one! Just two weeks ago GMHC launched a new women's support group that I attend and that might be a good fit for you too. Let me know if you are interested and I can put you in touch with the facilitators. And please keep me/us posted on the new "focus" group. I'm pretty sure I know which organization you are talking about and might like to try out that group as well...

Hey anon, I love this phrase from you - another part of me just wanting to scream, STOP TALKING ABOUT DEATH - I'M NOT DYING!! . Cool! I love it.
Though, the problem was that you were in a sense with the wrong group (non-hiv focus group). Now you gonna change that.
Nonetheless, the fact that people are not able to separate HIV from Death with all the amazing treatments all over the place today is mind-boggling. To be honest, I love the way you face the challenge. You are not dying so keep thinking about good things you wanna do for yourself. Never in your life put yourself in state where you start to lack the capacity to enjoy life because of HIV. Life is more than troubles in it and if some people are not able to see that, it is because they have closed their minds against the good things in life. Blind people laugh, sing and enjoy and why not someone with lousy virus like HIV. If you look well, you can be happy if you want. One last advice - one true way to happiness is do not seek or think after things and people that do not want you. Second, spend your time thnking about things you love than things you hate. Third, always remember that life is too short for everyone, like that, you got to live yours as happily as possible before you go. Fourth, whatever happens in life, you have to learn to accept it and move on because life is more than the troubles in it.

Firstly I would like to congratulate you on your blog. I can’t believe how much you’re doing & going through in such a short time.

I was diagnosed hiv+ at the age of 24, a year after being infected by having sex once with a man I never saw again but later discovered was very ill and who died within a year.

That was in London in 1987, almost 24 years ago now. I am outraged, angered and saddened that doctors are still coming out with remarks like “you don't look like someone with hiv”- prejudice is still rife.

I can definitely say that the one thing that did me the most damage was making a pact with my then partner to keep it a secret.

The best thing I did was find a support group, I don't know how I would have survived the first few years without them. It was the first support group for women in London and I think we started with about ten people. I had nothing in common with any of them except the thing that was uppermost in my mind at that moment which was HIV! A few years later, some of the women put a book of their experiences together, sadly I was too afraid of being “found out” (even though I could have used a pseudonym) to contribute. I don´t know if the book is still available, it´s called “Positively women, living with Aids” edited by Sue O´Sullivan and Kate Thomson, published by Sheba Feminist Press, London 1992.

I was physically quite well for the first few years but so emotionally stressed that I broke down mentally and physically with a prolapsed disc (apparently unconnected) after 4 years. Then my hiv health began to deteriorate very slowly but gradually and by the year 2000 I had to start ARV medication. I must say that I found starting medication really traumatic and it took me many months to settle down and get used to it, now it´s the least of my worries, it has become a daily routine that I give very little thought to.

It took me more than ten years and a change of relationship and an acceptance of my sexuality and the support of my new partner to be able to tell my immediate family. I wish I hadn´t left it so long. Keeping a secret is a terrible burden which I believe takes its toll mentally emotionally and physically. However I do think there is a very big space between keeping a secret from everyone and going around with hiv+ painted on your forehead. It is not wise nor necessary to tell everyone you meet on every occasion in the same way that you do not tell everyone other details of your sexuality, health and private life. On the other hand I have been to schools to give talks about my personal experience to a roomful of complete strangers and felt that I have in that way broken some stereotypes and prejudices.

We all need to do things in our own way and in our own time.

My other major regret is not having children because at first I was told I would have a year to live if I was lucky and then I was told it would be “irresponsible” and “selfish”. It´s a shame I didn't have the courage to follow my instincts.

I have suffered from depression anxiety and more than anything my life has been paralysed by Fear, and if there was one thing I would like to be able to say is Fuck it- don't let hiv take over and ruin your life. It´s part of us, but we are so much more and there is so much more to life.

Good luck!

It is helpfull reading that someone is going through the same thing as I am.. Newly tested Poz and had the same look from doctors and friends and family...you dont look like someone with hiv...my question is what does THAT person look like? Very hard to find support group for women who is positive and was infected by the man in her life where do you go who do you turn to. What I have learnt is keep living and I am not dieing any time soon..

Hi Anon! I'm truly amazed at the progress you've made in such a short time. I was diagnosed in 1989 and it took me nearly 11 years to seek any support from anywhere, my denial was just too strong and the internal stigma I held was even stronger. Anyway, that's all in the past now as I'm a fully disclosed woman having learned to shed the shame and fear I felt for too many years. You may want to check out SMART University (women only group) located NYC (you can google it). And another great program that I found helpful was LTI (Leadership Training Institute). Although LTI is mainly a program geared toward advocacy, I found it very helpful and learned so much from them, and from there I found myself "living" with HIV, not dying from it. I learned to control HIV and not allow it to control my every step. I wish you well on your journey, and just know that one day you will feel empowered enough to come out of the HIV closet, especially since you're so proactive at such an early stage in your infection. KUDOS to you!!

This is how its going to be find a group that supports your well-being Mental and spiritually
Here in Philadelphia I facilitate a group Bridge Over Troubled waters. I am Pos + going on nine years. What I was looking for was what it say support group> And I have it coming from people just like me HIV positive. I am also an AIDS activist and writer.
I foundout a long time ago that people who need people are so rich> because after taking AIDS educaction courses my support network has grown.
No matter what the gender preference was, we meet every monday on this common ground that we have the virus. I have learned so much and we learn from each other about feelings. So your right get in where you fit in, thats what we say.

hi...

i have to say, i am in the same boat as you. i am recently diagnosed (a couple months) and i too tried a support group here... it was a nightmare. it was filled with people i felt completely uncomfortable with and was a total wreck after the group. i find that doing a one on one therapy session works for me much better than people telling me sad stores about their lives...basically living to die. I am the most upbeat and positive person you will find with this. i have an awesome outlook on my life and having some of the best dr's doesn't hurt either. You need to realize that you are the person you were the day before you found out, you feel great, and there is no reason for you to ever feel differently. It would be nice to talk to people who have it that aren't negative emotionally but sometimes thats just not an option. those people weaken your will because they themselves believe they will die of this disease...which, with today's medications, does not have to be your future. if you have feel bad days...which we all do, i find that hiv chat rooms help me out.i have talked to people who have had this for over 40 years... sometimes group meetings really do more harm than good.

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This page contains a single entry by Anonymous published on January 27, 2011 6:29 PM.

New Year, New Meds was the previous entry in this blog.

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