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AMA

I was born HIV positive and now have AIDS

59 replies

RemusLupinn · 01/05/2019 15:52

I'm female and in my early 20s - AMA

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Chocolatecoffeeaddict · 01/05/2019 15:56

I'm so sorry. What is your quality of life like? Also, I really thought that the chances of HIV leading to Aids was now a lot lower?

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le1la · 01/05/2019 15:59

Did you find out at birth, and was this something your parents told you?

Has it ever affected your relationship with people in a negative way - either through their ignorance or fear?

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RemusLupinn · 01/05/2019 16:04

I found out at 15 and it was a doctor that told me. I went to regular check ups where they monitered my health and I just thought it was normal for everyone to go to regular check ups where they take your blood.

It was my mother's decision to keep it away from me. At the time, my immune system was in good shape and I didn't need medication so she chose to keep it quiet. She is extremely religious and hoped that if she prayed enough, there's be a miracle, it'd just go away and I'd never have to know.

The doctor decided to tell me at age 15 without my parents' agreement because a lot of people become sexually active at that age and my not knowing would put other people at risk. I arrived at the appointment thinking it was just another check up and the doctor dropped the bomb.

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RemusLupinn · 01/05/2019 16:07

I've only discolsed my status to a handful of people. The first was a school friend of mine just after I found out. She didn't believe me, thought I was joking so I just dropped it. The others I've disclosed to are very close friends. I only told them quite recently in a moment of distress. At first I regretted it deeply but they've been extremely supportive.

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IdaBWells · 01/05/2019 16:14

RemusLupinn I am sorry to hear you are dealing with this, do they know how you contracted HIV? Is your mother also HIV positive? Has she been supportive since you were told about your diagnosis? I'm sorry to hear she withheld the information from you. I guess it was a misguided attempt to protect you.

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Seraphimofthewilderness · 01/05/2019 16:17

Was she your birth mother?

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RemusLupinn · 01/05/2019 16:23

What is your quality of life like?

Physically I'd say I'm quite healthy (for now). I'm lucky in that I've never really been ill. The biggest physical symptom is probably fatigue. Mentally though it's a struggle. I'd say for me the biggest challenge has been the effects on my brain. I haven't been for any tests and I have no way of confirming this but I suspect I've been suffering from something called HIV-Associated Neurocognitive Disorder. It'd explain why I've found it increasingly harder to function normally over time. I was quite academically gifted at school and received awards for my results at A Level but I've struggled ever since with things like memory and thinking on a higher level. There's even been a noticeable decline in my ability to speak fluently.

Also, I really thought that the chances of HIV leading to Aids was now a lot lower?

Yes. If the virus is caught early and medicated, the chances of developing AIDS are very small. I've really struggled with the side effects of the medication over the years which have included things like depression, problems sleeping, and vomiting. I've been on and off several different types of medication and at this point I have no plans to take any medication in the future.

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Lovethetimeyouhave · 01/05/2019 16:28

If you don't take any medication in the future what does that mean? Will your life be shorter?

Sorry if I sound insensitive, I don't mean to

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RemusLupinn · 01/05/2019 16:30

I am sorry to hear you are dealing with this, do they know how you contracted HIV? Is your mother also HIV positive? Has she been supportive since you were told about your diagnosis? I'm sorry to hear she withheld the information from you. I guess it was a misguided attempt to protect you.

My whole family is HIV positive. The official story is that my father contracted it through a blood transfusion after an accident before my sibling and I were born.

I remember after I found out, one of the nurses st the clinic gave me information about a free residential trip for young HIV positive people. I thought it'd be good to go and make some friends and meet people in a similar position. I asked my mum if I could go and she said no. The risk of being 'exposed' was greater than any benefit I guess. She's been supportive in the sense of encouraging me to take my medication, helping make hospital appointments and driving me those appointments. But we don't really discuss any of the emotional aspects.

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RemusLupinn · 01/05/2019 16:31

Was she your birth mother?

Yes she is

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luckygreeneyes · 01/05/2019 16:32

That’s for sharing... glad to hear you’re well for now. You say ‘official story’ do you believe there’s an unofficial story?

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RemusLupinn · 01/05/2019 16:33

If you don't take any medication in the future what does that mean? Will your life be shorter?

It means that I'll be at risk of catching an opportunistic infection which my immune system will struggle to fight.

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Lovethetimeyouhave · 01/05/2019 18:08

Wow OP, it's really sad you had no choice in this :(

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nocoolnamesleft · 01/05/2019 18:20

How you were told sounds like a horrible shock. How/when do you think would have been the least bad way to find out?

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Littlechocola · 01/05/2019 18:24

Are you angry at your parents?

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Herland · 01/05/2019 18:29

I'm so sorry that you are living with this. Have you or are you receiving counselling? Do you feel like you have anyone to talk to when you need it?

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MrsGrannyWeatherwax · 01/05/2019 18:32

Completely (and stupidly) ignorant of me but do you have to disclose you’re HIV positive to sexual partners? Or do the drugs surpress it so well that there is no risk.

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evilharpy · 01/05/2019 18:34

Hi OP. Thanks for starting this thread.

Are you able to work and if so have you told your colleagues and how have they reacted?

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CallMeRachel · 01/05/2019 18:41

Was your school and caregivers ever informed of your status by your mother?

Does it affect you getting a mortgage or life insurance?

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Schoolchoicesucks · 01/05/2019 18:56

Does your sibling also have HIV?

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RemusLupinn · 01/05/2019 19:11

How/when do you think would have been the least bad way to find out?

I think being told as soon as I was able to understand would have been best. And then maybe some help dealing with it and preparing for the challenges I'd face later on. Anything would have been better than just kind of ignoring it.

Are you angry at your parents?

A bit. Though I try not to waste time on anger because I am where I am and no amount of anger will change that.

Have you or are you receiving counselling? Do you feel like you have anyone to talk to when you need it?

No, I haven't received counselling though I have the option of seeing a counsellor through the clinic I attend. I have great friends who I discuss this with from time to time as well as online forums for positive people.

Completely (and stupidly) ignorant of me but do you have to disclose you’re HIV positive to sexual partners? Or do the drugs surpress it so well that there is no risk.

After some time on medication the virus becomes 'undetectable' and there's no risk to partners. I don't think you legally have to disclose your status but if you don't disclose your status and the person catches HIV from you, you can be prosecuted.

Are you able to work and if so have you told your colleagues and how have they reacted?

I'm a student at the moment but no I wouldn't tell work colleagues.

Was your school and caregivers ever informed of your status by your mother?

No, no one knew apart from the medical professionals involved in my care and more recently the few friends that I've told.

Does it affect you getting a mortgage or life insurance?

There are specialist life insurance policies available and my parents have a mortgage despite their statuses so I doubt it. I haven't looked into it in any detail though.

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RemusLupinn · 01/05/2019 19:11

Does your sibling also have HIV?

Yes

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brownjumper · 01/05/2019 19:16

What did your mother say when the doctors told you?
Was there doctors discussion beforehand with a medical team and they decided to tell you after discussion with your mother or did one doctor just blurt it out? I would have thought there was a protocol in these matters?

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RemusLupinn · 01/05/2019 19:29

It was my dad who took me to the appointment and he spoke to the doctor before I did so my guess is that during that meeting the doctor told him that they'd made the decision that it was in my (and the general public's) interest to inform me. My dad probably agreed to this anyway because 1) he was put on the spot and 2) he's a lot less 'with God, all things are possible!' than my mum.

I went straight to bed after the appointment and my dad informed my mum after she got home from work that I'd been told. She woke me up and we talked a bit. She apologised and said that if she'd known they were telling me she would have come to the appointment, explained the reasons why they kept it away from me, and told me the car accident and blood transfusion story. Then we never really talked about it again.

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OldAndWornOut · 01/05/2019 19:34

You say the "official story" regarding how your dad contracted hiv.
Am I reading too much into it, but do you have a sneaking suspicion that's not how it happened?