Why?

[Trotski]

So, I just took the Needs Assessment, and just like every other attempt I have made to get my needs taken care of, once I had finished I was expecting to be directed to resources, but what I got is NOTHING! Well, I did get a readout and comparison to others who had taken the assessment, but in terms of my needs, it just parroted them back. In order to take the assessment I KINDA HAD TO KNOW WHAT MY NEEDS ARE ALREADY. Forgive my anger, but four years, so many online support groups that I've forgotten some, renewing my client information at my local ASO so they can get money from the government and telling them what needs I have, an actual meeting with the. Director of my local ASO, talking to the agency where I receive therapy for CPTSD, talking to what family and friends I still have, so many other things that my anger won't allow me to remember right now, and STILL NOTHING! Were I even the slightest bit not in control of my emotions, this could have a very tragic ending, but as things are, I will go back to clinging to a life of subsistence while those who gather the information from the assessments use it in some way that is inconsequential to my needs. Business as usual.

[poorly08]

I felt emotional after reading your very insightful and honest expression of your frustration with a system that's there to help you but use you. As a matter of fact, I think once you are known to be HIV +, you become more vulnerable to be identified as a number and not as a person as most health care practitioners are still uneducated about HIV and the progress people living with it have made as a result of advance medication.

You have come a long way. Keep your good thoughts flowing, live life and don't let the negativity around you stop you moving ahead.

[Griffon]

What is the problem ?

You keep on about " your needs " but what are they ?

Anyone on medication with an undetectable viral count is to all intents and purposes unaffected by HIV , so unless you can be more specific I can understand why you are being turned away .

[poorly08 in reply to Griffon]

I don't totally agree with you on your point Griffon. Because you have undetectable viral load does not mean you are to all intent and purpose unaffected by HIV. How many people including healthcare practitioners understand that undetectable viral load means untransmittable disease? Very few. I work in the hospital and still find it frustrating when nurses and other healthcare practitioners display deep-rooted ignorance and prejudice to people living with HIV regardless of their viral load. It's only those that work in the sexual health clinic that seems a bit knowledgeable.

I have a friend who has had an undetectable viral load for 12 years, yet once she got pregnant and goes for screening, she is given a red tag while the other pregnant friend gets a green tag. She stands out like a sore thumb as people notice and ask why her tag is different. More education is required where UNDECTECTABLE =UNTRANSMITABLE is concerned.

My need at the moment is to be treated without the stigma of being a carrier of "an evil disease" as I can not infect anyone more than the person that has not yet tested themselves and yet are free to have unprotected sex at will.

[Griffon in reply to poorly08]

So basically what I said is correct - undetectable viral load means HIV is having little to no impact on a sufferers health .

The complaint was that the posters needs were not being met , but it's seems there are no needs that need to be met .

Other people's attitudes can't be helped . Simple solution is not to tell anyone .

[poorly08 in reply to Griffon]

What you said about UNDETECTABLE=UNTRANSMITABLE is right but it does not mean it has no impact on the sufferer's health as what impacts on your mental health will eventually impact on your physical health according to World HeALTH organisation,"NO HEALTH WITHOUT MENTAL HEALTH". Just because one is undetectable and so unable to transmit the virus does not mean one still doesn't face the stigma of rejection and being treated as if one can still transmit the disease. I do not know the needs which the person went to be assessed for but I know first hand of being treated shamefully just because your medical card says HIV+.

Remember, most of the forms one fill in a hospital does not have a column for "are you undetectable?' it's because the populace who deal with your health matters are still ignorant about that aspect of HIV which makes someone living with HIV but undetectable 100% better than someone who hasn't tested themselves.

While not disclosing is the best thing you can do, but how could you not disclose to your GP, or disability assessors or to the team that will be performing an intrusive surgery like child delivery or gallstone remover on you?

When you have been treated like a plague just because your medical card has HIV+ stamped on it, then you will understand that being UNDETECTABLE still impacts on your life.

[Griffon in reply to poorly08]

The original poster made the statement that his needs were not being met . My question was what are his needs because anyone on treatment and undetectable is basically unaffected by the virus .

It seemed to me he was angry with the system for something that was beyond their power to give . Expecting benefits when there is actually no incapacity is unrealistic . I suspect that is why his needs are not being met .

As for disclosure , that is a totally different subject and not the remit of any Government department . Personally I have had no difficulty not telling my GP's .

HIV is only one of several incapacitating illnesses I have , but it has not stopped me working , I have always supported myself .

[poorly08 in reply to Griffon]

You are right that with undetectable viral load, expecting benefit is not unrealistic but a lazy approach which is sickening.

But my response was actually to your statement that undetectable viral load means HIV does not have any impact on a sufferer's health.

Like I said, I do not know what this person's needs were that was being assessed but I could relate to his HIV+ but undetectable level still being treated like a plague in a healthcare setting.

I work as a healthcare practitioner and have seen many people become disabled as a result of late diagnosis of HIV complication and opportunistic diseases. Such people face a tougher assessment of disability as the only thing most assessors know is that HIV does not mean you cant work which is 100% correct but if you have developed opportunistic diseases like Bacteria Respiratory disease or Enteric disease or Cryptococcosis which limit your ability to live life fully, then your HIV and undetectable level will work in contrast to your needs as your HIV status says this is a manageable disease and the other disease says we are here to stay with you as a result of you having HIV. It's a confused loop which if not thoroughly assessed by knowledgeable people can leave the sufferer feeling angry or fed up with living.

[Griffon in reply to poorly08]

This is why I asked what the posters needs were -

[Trotski]

Penultimate to my immediate needs, which I have been communicating every chance I can (go read the posts I have made in the past) is to have some action from those to whom they are communicated. It's difficult not to assume that you, Griffon, are naïve or lacking in empathy, but saying that being undetectable somehow diminishes any of the impact of this disease but especially anyone dealing with it from the beginning of its epidemic stage. Yes, it's a freaking miracle that I lived 13 years without any treatment whatsoever and without getting any opportunistic infection, but that didn't effect my thinking my life could end in that fashion as I had seen dozens of friends and hundreds of acquaintances. It's a real bitch. I really think you missed the theme of my post which was FRUSTRATION. In the meantime this is both a darker and lighter take on my journey with this illness.

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