What's the main piece of advice you would give to someone newly diagnosed?

[SimoneHU]

The diagnosis might be a moment of fear and confusion. Look back at your experience and offer advice for others in the same situation.

[pauldecle Partner ForumLink]

The two main pieces of advice I would give are DON’T PANIC and Do not spent your pension. You will need it.

For most people living with HIV in the UK who have a good CD4 count and have the virus controlled with Antiretroviral Treatment they should live just as long as the rest of the population. If you have just found out you have HIV give yourself some time. This is still a life changing diagnoses and it is normal for your head to go into overdrive.

I have been living with HIV for well over 15 years and in that time I have seen treatments become more and more affective and much easier to take will little or no side effects. It can be useful to find other people living with HIV who you can talk to. Learning about the condition and treatments will also stand you in good stead. HIV i-Base is an excellent source of treatment information all of which is provided free of charge and available in many different languages. I-Base also have a treatment information phone line manned by other positive people who you can talk to about any aspect of treatments. Full details of all their publications and the phone line are on their web site at i-base.info

[Survivor83 in reply to pauldecle]

Hey Paul, I just have to say that not spending the pension is good advice. When I was diagnosed with GRID after taking the western bloc test in 1983 the doctors were so confident I would be dead within two years that I took it as a wo year time limit on a party. I quickly maxed out my credit cards and sold my life insurance policy and started partying hard. Three years later I was still alive, addicted to drugs and alcohol and had no money or credit. I look back on it now and laugh my ass off but in reality restoring my credit and paying off my debtors was difficult. I have also kicked the addictions and have an amazing and prosperous life where I am able to be productive in society and an asset to my family.

[George895]

After you get over the initial shock of diagnosis make sure you get the right health care support and don't be afraid of asking your consultant questions if you think something isn't right.

[Ydontujustdie]

I was diagnosed with HTLV3 in 1983 ( it was renamed HIV in 1985) I was told by my clinical nurse specialist to stop working, take a ground floor council flat, have a car, get free holidays in Ibiza, try to get fat, drink, smoke, take drugs, spend my money (except save a bit for my funeral as it cost more to cremate cadavers with no fat) and have a good time while I waited to die.

I didn't , I carried on working and paying my mortgage and pension. My partner and our friends all took this advice and they all died, probably more from alcohol poisoning than anything else. I survived because I had work to do and started looking after myself. The only effect HIV had on me was to make me grow up fast and take responsibility for myself and our community (which no longer exists).

So from my experience all I can advise newly diagnosed people is to carry on as you are because nothing has actually changed unless you allow it to. Take your meds every day at the same time and there is no reason for your life to change other than the probability of living longer than you would have done without having HIV because your health will be monitored, and anything nasty will be picked up early so increasing your chance of survival.

I can't get my head round the arguments people give for not complying with their medication, it's just a couple of pills once a day that hardly have any bad effects. I spent 7 years vomiting and pooping. I had alarm clocks going off every few hours day and night to remind me to take huge handfuls of toxic trial drugs, and not all of them were as simple to take as swallowing pills but when it was pills they were huge and they had to go down in handfulls of 6 at a time. Every week I would leave the clinic with 2 heavy carrier bags of meds wondering how the hell I was going to eat this lot again knowing that it was going to make my guts churn and my bum feel like a dragons nostril. You have no idea how lucky you are.

So there is my advice, do nothing different other than take your meds. and if you start feeling sorry for yourself, go and help someone else who is worse off than yourself and put things into perspective.

[Survivor83]

The advice I give to newly diagnosed people is take your meds always. If you keep your viral load at non detectable levels, meaning under 50 copies per ml., you CAN NOT pass the virus on. This is so powerful because you as a newly diagnosed HIV+ person have the power within your hands to eradicate this virus. All you have to do is take your meds. If NONE of us pass the virus to anyone else it will die with us. You have that power so please us it.