Hello! :)

[Iolo2020]

Hi all,

I’ve been reading some posts on here over the last few days and I think now it is time to share my story.

I have HIV.

There, I said it. And putting it into words makes it far less scary than my wandering thoughts would have me believe.

I was diagnosed a few weeks ago. I had a doctor’s appointment about a very minor, unrelated illness (since treated and recovered) and when I was there she suggested it was time I have one of my regular STI screens.

Her suggestion changed, and saved, my life. I hadn’t been thinking of having a STI screen that day but the fact that I did, and that it showed the virus is inside me, is a sign that the universe wanted to alert me to my status so that I could do something about it.

Of course, as you all already know, being diagnosed with HIV is a real shock. I remember just thinking I was going to faint. Being from an at-risk group, I’ve always known this was something that I could one day contract, and I also knew that it was not a terminal illness but a manageable, chronic condition when on the right treatment. The logical part of my brain knew that; my emotions did not.

I’ve since seen a specialist, who has started me on a preliminary course of treatment (Biktarvy) while we sort out some insurance issues (not being originally from the US, I think the price of healthcare is as scary as the diagnosis!). I had the initial blood tests taken and am waiting for results. I have to say, I was really nervous before the doctor’s appointment, but I’d almost go as far as to say it was a pleasant experience. Of course, no-one wants to be there, but the staff were so friendly and made it clear from the very beginning that they were focused on me. I’m in my late twenties, and I know that with effective treatment, I will hopefully live a long and healthy life (But I can’t stop thinking it will be a very different life from the one I thought I’d have.) But my doctor went further than that, he said that people diagnosed with HIV today may even live longer than some others in our age group because we will be attune to our health needs throughout our life (instead of ignoring niggling problems, they can be caught and treated early).

I’ve started taking treatment each morning and in a way I find it empowering. Before my diagnosis, the virus was working inside me, destroying my immune system without my knowledge. Now the tables have turned and I am destroying it.
That said, I’ve struggled to come to terms with it mentally.  The first few weeks were a complete blur. I still wake up early every morning thinking (and panicking!) about my diagnosis. As I get up and go about my daily routine, the day gets progressively easier, but sometimes it’s hard to find that push needed to just get up. And there are times I can be in very every-day situations, in a work meeting, having coffee with a friend, and in my mind, all I’m thinking of is “I have HIV”.

I’m a worrier for sure. What if there are bad side effects? What if I have further complications? What if the virus becomes resistant to my treatment? What if I have to quit my job (which involves a lot of travel)?

I haven’t disclosed my status to anyone yet. I will, in time. But today is the first step.

So that’s my story so far. I don’t really have any questions etc. for now. I just wanted to tell someone, so I’ve told you!

Hope you are all keeping well.

[Jim Allen]

Hiya,

Welcome to the forum, sorry to hear about the dignoisis but glad to hear you have started treatment and that the clinic staff were friendly & supportive.

What was your initial VL & CD4 counts like? Did you need antibiotics to prevent infections?

I’ve struggled to come to terms with it mentally.  The first few weeks were a complete blur. I still wake up early every morning thinking (and panicking!) about my diagnosis. As I get up and go about my daily routine, the day gets progressively easier, but sometimes it’s hard to find that push needed to just get up. And there are times I can be in very every-day situations, in a work meeting, having coffee with a friend, and in my mind, all I’m thinking of is “I have HIV”.

I think many people here can identify with what you are going through. It's a journey that takes time, those thoughts will get less and less as time goes by.

Anyhow, I know it can be a lot to digest at first, just keep in mind you are not alone.  If you have questions, concerns, thoughts you want to share or if you just want to chat we are here for you.

But I can’t stop thinking it will be a very different life from the one I thought I’d have.

In what sense do you think life will be different?

The odds of course always were live long enough and develop or acquire some  manageable conditions, sounds like HIV is your first?

I haven’t disclosed my status to anyone yet. I will, in time. But today is the first step.

Generally I would say no rush and no need to disclose your medical info either unless you want to or it's a requirement.

What if there are bad side effects?

The meds you are taking are very tolerable, however, worst case scenario if this combo does not suit you than there are plenty of other combinations.

What if I have further complications?

Like what? Anyhow, if there is an issue you will have to face it when and if that happens. In the meantime the virus will soon be suppressed, job done, keep taking the meds as directed to keep it that way and check-ups once every 6 months to ensure all is going well.

What if the virus becomes resistant to my treatment?

With the last few generations of meds, if you keep taking them correctly and as directed realistically this should not be an issue unless there was pre-existing resistance and the clinic should have tested for this.

If your HIV does turn out to be resitant there are plenty of other combinations.

What if I have to quit my job (which involves a lot of travel)?

Why would you quit your job? Very few jobs that have HIV restrictions left as far as I know if that's the concern.

I travel a fair bit for work and it's never been an issue, there are only a very few places I would avoid travelling to due to my HIV status. You can check if any of the places you travel to in the world might be a concern here: https://www.hivtravel.org/

Best, Jim

[Iolo2020]

Hi Jim,

Thanks for the reply and the warm welcome. It's nice just knowing there's a group of people who have been through this and are here to help.

I haven't got the results of my VL and CD4 counts yet. That will take 2 weeks or so. They've started me on the Biktarvy for now and will review once the results are in.

A lot of people say this is a process, and it will get easier with time. I know they say that time heals all things. Just wondering if anyone has any useful coping mechanisms? I know what works for one person may not necessarily work for everyone, but I'm very open to trying things out. I've started some deep breathing exercises and I find they help settle the mind.

I'm in two minds about disclosing my status. I guess on some levels I want certain people to know because I feel strange acting as if everything is normal when I'm around them, and I think they could help support me. On another level, it's nice sticking to normality with them, it shows that life goes on. Plus I'm not sure how they will react (although I think/hope they would be supportive), and part of me doesn't want to burden them with my problems. My doctor pointed out that it really is a manageable condition nowadays, and so, medically at least, there is no immediate danger which brings a "need" to tell friends and family.

Thanks for talking me through the concerns I've listed. Like I said, I'm a worrier. The logical part of my brain absolutely knows you are right; the emotional part still has all those niggling "what ifs...", hopefully, in time I will learn to block them out, accept that it is what it is, and live in the present.

[Iolo2020]

P.S. A big shout-out to all those on here who have been living with this virus for many years. It can't have been easy for you, but you are our hope & inspiration!

[Tonny2]

       

      ojo.          Hi, welcome!!... I have been living with HIV/AIDS for almost 26 years. I know that it’s not easy when you get an HIV diagnosis, but, You should be proud of yourself for having yourself tested for HIV, now you know  you are positive,now you treat it... How to cope with it?, when I got the diagnosis I was a little bit scared, I was admitted in the hospital because of PCP, therefore, AIDS, just 20 cd4. When I started treatment, I asked my doctor how much longer would I live, back in the days, getting this kind of diagnosis was a death sentence. The doctor told me that I would live two more years, I went home and stayed in bed for four days no wanting to do anything. Day five, I woke up thinking, the doctor told me that I would live for two years and I already wasted five days, so I got up took a shower and called the office to let my boss know that I was going to be at work the following day. I kept myself busy, and that was the way that I coped with it... Breathing exercises help. You are not alone anymore you can Count on us to help you go through this situation. Don’t tell anyone about your status until you have digested do your diagnosis because if someone Rejects you you will have another situation to worry about... feel free to send me a PM if you need some help or someone to talk to...hugs

Ps. There is life after an HIV diagnosis

[Iolo2020]

Hi all,

Happy Friday!

I got my initial CD4 and VL results today, taken just before I started treatment:

CD4: 413
VL: 15,880

Not sure what to make of this but my doctor was very reassuring and said that while the VL may seem high to me, it can actually be much higher. He also said that early diagnosis has meant that the virus has not yet caused a lot of damage to my immune system and now that I am on treatment, I should hopefully see a further improvement in these results when I am retested in 4 weeks.

[TGun]

Hi lolo,


im 3 years into this thing myself,, im here for converasation if you ever need it.  it get alot easier thats for sure.  took me about 18 mos approx before i realized i was no longer mentally consumed with it and other things in life were now on my subconsious. 

HMU if you need a chat

[Iolo2020]

Hi Everyone,

It has been a few months since I introduced myself here and I've come back to share some good news.

I just got the results of blood tests taken after 11 weeks on treatment; I am undetectable and my CD4 count is rising (now ~500)!! 

I am really delighted with this news, it's a nice boost after a tough few months (mentally more than physically). There have been a lot of ups and downs. I've gone from being consumed by this news all day and night to only thinking about it every now and then at random points in the day (there are some days I don't even think about having HIV except for when I take my pill in the morning). There are other days when it does take a toll on my mental health, but nothing like how it was after the initial diagnosis.

I am starting to realise that HIV is a process, the shock of the initial diagnosis is just one part of it. I am so lucky to have a really great healthcare team who are committed to helping me through this process - they definitely treat me as an individual and not just a number on their system.

My focus now has to be on boosting my mental health and stopping some of the self-stigma, while the medication and my bolstered immune system keep the virus under control.

I haven't disclosed my diagnosis to anyone yet, so I don't have anyone to talk to about this apart from my healthcare team, so that's why I'm really happy to be able to share this news with you all.

Hope everyone is doing well.

[Jim Allen]

 

Glad to hear things are going well and treatment is suppressing the virus.

I am starting to realise that HIV is a process, the shock of the initial diagnosis is just one part of it. I am so lucky to have a really great healthcare team who are committed to helping me through this process - they definitely treat me as an individual and not just a number on their system.

My focus now has to be on boosting my mental health and stopping some of the self-stigma, while the medication and my bolstered immune system keep the virus under control.

It's good to hear you have a good and supportive healthcare provider and on living with HIV being a process, yeah it's a journey, not a race.

[Tonny2]

       ojo.       Hi lolo... I am happy for you!, Learning to live with HIV it takes time, eventually you will get to a point that you won’t even think about  being hiv positive... Keep up the good work...hugs.                                                                       ojo