I was wrong: I still have a long way to go...................

[karry]

I was diagnosed more than 4 years ago and so far I have had very few issues disclosing to family, close friends and medical personnel. However, I felt like I was loosing it today when I had to fill out a form at a dental clinic  (I had been referred to that clinic by my dentist for an evaluation).On the medical questionnaire they requested I fill out, I had to indicate if I had any of the  medical conditions on the list, and one of them was "AIDS/ Or the AIDS Virus".

I indicated my status, and immediately started feeling very uncomfortable. It brought back memories, questions and regrets.


That just got me wondering how long I still have to go. I had started feeling comfortable with me ......Do you ever get these setbacks?

Thanks.
K

[CaptCarl]

Karry-
  I understand completely, having been there myself. It took quite awhile for that feeling to go away. I've been poz for 23 years, and even now there are things that can trigger this, but they are pretty rare. For the most part though, I'm pretty blase about the whole thing at this point. You wil be too soon enough. Hope this helps.

CaptCarl

[mikeyb39]

Hi Karry,
I just went thru that as well myself. I had always had a dentist, but when i was diagnosed I didn't want to go back to the dentist i used for some reason.   I had my doctor refer me to a dentist and was really nervous for some reason going to the appointment.  The medical questions were AIDS or HIV.  I let my thoughts get too me too much, the dentist looked over my forms and asked me if my numbers were stable and that was it.  I don't know what i was expecting him to say..lol.

[LM]

To be honest? I wouldn't say unless strictly necessary. Why does the dentist need to know that? He should take care just like any other patient. Thank God where I live you don't have to disclose to anyone if you don't want to.

[mikeyb39]

I don't think you have to disclose, but its always good to let your dentist know you're medical history and medications you are taking.  I have a friend that has a heart condition and anytime she goes to the dentist, even for a cleaning, they have to put her on antibiotics.

[leatherman]

It took quite awhile for that feeling to go away. I've been poz for 23 years, and even now there are things that can trigger this, but they are pretty rare. For the most part though, I'm pretty blase about the whole thing at this point. You wil be too soon enough.

I totally agree. It took quite awhile to get used to it, and now, every once in a full blue moon, it still seems a bit weird - especially if I haven't had to fill out paperwork in a long time. Checking into a new hospital a week and a half ago for some outpatient surgery, I had to go through that whole situation telling all those new people

For the most part though after being poz 26 yrs, and diagnosed with AIDS since 92, I'm actually kinda proud to check off that HIV/AIDS box and let the doctor and staff know that I've been fighting and winning against this bug for decades

Like many things, it just takes time and things get better (or you get more used to them and they don't seem so important. LOL) Hang in there and give it more time, and eventually it would seem so profound to check off that box.

[tednlou2]

"Or the AIDS virus?"  Seems easier to just say HIV.  I've had mixed feelings about disclosing my status to every medical professional---like when I recently got an ultrasound of my liver.  I thought why do they need to know that?  Would knowing that make them look at my ultrasound in more detail than they normally would have?  I decided to just answer the question just in case they would.  But, surely they would take as much time evaluating the ultrasound regardless.  If they found something that didn't look right, I wouldn't be talking to them anyway.  They would send the results back to my doc, who I would discuss the results with.

I find myself more frustrated with docs and medical professionals assuming I'm gay, because I have HIV.  I realize HIV is more prominent in gays in the U.S., but still find their assumption a little frustrating.  It just makes me think they'd dismiss symptoms in patients they know to be straight thinking they couldn't have HIV.   

[edfu]

Why does the dentist need to know that?

The dentist needs to know that to help YOU.  There are oral conditions particular to HIV-positives, and if you don't let him know, he may not be alert enough to check for them. 

Anyone HIV-positive who doesn't let a medical professional  know their status is being extremely foolish.  Correct diagnosis and treament of any medical condition is dependent on full knowledge of one's medical status in every regard. 

[karry]

Thanks to everyone for the feedback. It sort of feels comforting knowing I am not alone in this.

k.

[emeraldize]

The dentist needs to know that to help YOU.  There are oral conditions particular to HIV-positives, and if you don't let him know, he may not be alert enough to check for them. 

Anyone HIV-positive who doesn't let a medical professional  know their status is being extremely foolish.  Correct diagnosis and treament of any medical condition is dependent on full knowledge of one's medical status in every regard. 

Totally agree. Always good to have an extra pair of eyes to check out your mouth. I look at it as enlisting someone on my team and if the practitioner isn't a good player, I will drop them....pronto!

[mecch]

I indicated my status, and immediately started feeling very uncomfortable. It brought back memories, questions and regrets.
That just got me wondering how long I still have to go. I had started feeling comfortable with me ......Do you ever get these setbacks?

I want to check that I understand correctly what you mean.  Do you mean, how long before I feel comfortable being HIV+?  Before I feel comfortable disclosing when there is a doubt its necessary?

For a moment I though you were wondering how long you have to live...  It's not that, right?

Well, it seems common and natural to have a doubt about disclosing in some situations.  I agree with most people - it seems useful to tell a dentist, for example.

But you said it made you start thinking back about stuff in the past.  Perhaps in a stressy situation related to being HIV+ its best to try to focus on "right now" and why someone is asking, and the cost/benefit of disclosing, and make a decision.  Its really got nothing to do with how you lived your life in the past.

I wouldn't beat myself up about being uncomfortable.  Maybe I would however figure out generally what exactly the baggage has to do with now and the future.

[surf18]

Good topic!
I recently had the question on a dentist form as well
I checked no. I said screw I don't want thier judging real or imagined. And to be honest it felt so good.
Another time I wrote in didn't know

[woodshere]

Good topic!
I recently had the question on a dentist form as well
I checked no. I said screw I don't want thier judging real or imagined. And to be honest it felt so good.
Another time I wrote in didn't know

When dealing with any dr I am always honest about my status.  I think anyone involved in any aspect of my health care needs to know.  I haven't had a bad experience with any medical professional regarding their judging me.  If by chance I sensed someone was being judgemental then I would be very happy I told them so that I could go elsewhere.  Disclosing my status to one of my healthcare providers is one of the very few no brainers in my life.

[leatherman]

If by chance I sensed someone was being judgemental then I would be very happy I told them so that I could go elsewhere. Disclosing my status to one of my healthcare providers is one of the very few no brainers in my life.

agreed!
there's an old adage to never lie to your doctor or lawyer

both are ethically and legally bound to hold your information private. Both need to know the whole truth/facts about you to properly provide you with their services.

[LM]

The dentist needs to know that to help YOU.  There are oral conditions particular to HIV-positives, and if you don't let him know, he may not be alert enough to check for them. 

Anyone HIV-positive who doesn't let a medical professional  know their status is being extremely foolish.  Correct diagnosis and treament of any medical condition is dependent on full knowledge of one's medical status in every regard. 

If it is relevant, then yes, you should tell. Or else, I think it's completely unnecessary. If you are feeling something strange that might be related to HIV, then it's important. But if you are going on a routine visit to the dentist and you're perfectly fine, what's the point? The dentist should be alert to all patients. We are not freaking radioactive or anything.

[drewm]

The reason any health-care provider needs to know has nothing to do with whether we are "radio-active" or not, it has to do with diagnoses and prescribing meds that may present a contraindication to any drugs we are on. It may also help them decide how to treat otherwise "normal" infections, colds etc.

[edfu]

If it is relevant, then yes, you should tell. Or else, I think it's completely unnecessary. If you are feeling something strange that might be related to HIV, then it's important. But if you are going on a routine visit to the dentist and you're perfectly fine, what's the point? The dentist should be alert to all patients. We are not freaking radioactive or anything.

As someone just recently diagnosed, you have much to learn, my friend.  You don't always feel "something strange."  You might, but not always.  For example, can you tell your CD4 count without a blood test?  You can feel perfectly fine with CD4 counts in single digits.  And how do you know whether something is related to HIV or not?   With your attitude, I hope you are able to stay healthy.  Good luck.

[LM]

Please, that's bordering on the absurd, I'm not stupid. I'm talking about a routine visit to the dentist, not about blood tests or hiding what meds you are taking. If you wanna be extreme, let's just carry a big "+" on our forehead.

[drewm]

The point is relatively simple. Since HIV/AIDS is a medical condition, to not tell your provider is akin to asking them to diagnose and treat you with one hand tied behind their back. If you are not comfortable telling a particular provider, perhaps that person is not the best for you to see. As always, it's a call each of us will have to make not once but over and over and over again.

Not sure about any of you but I am less tolerant of these medical professionals making mistakes or allowing even the possibility of a misdiagnoses or a medication that is too weak. I want my doctor to know everything about me so that he and I can make the best informed decisions based on my condition.

How you handle this is your call. At any rate, good luck! 

[karry]

[
I want to check that I understand correctly what you mean.  Do you mean, how long before I feel comfortable being HIV+?  Before I feel comfortable disclosing when there is a doubt its necessary?

For a moment I though you were wondering how long you have to live...  It's not that, right?

Well, it seems common and natural to have a doubt about disclosing in some situations.  I agree with most people - it seems useful to tell a dentist, for example. 

[/quote]


@Mecch: I meant how long it will take for me to feel comfortable disclosing when it is necessary.


I also agree with most responses that it is important to disclose to  a medical specialist on a first visit. My dentist knows my status. She had referred me to a maxillofacial surgeon and I deemed it very necessary to be honest with them.

My issue here is not about actually disclosing...its more like the feelings that came after it, and how I need to manage them from here and move on.
K.

[surf18]

i told my plastic surgeon only because he doesnt wear gloves when he does botox. i thought for his own safty i should tell him. otherwise i would have checked the no there too.
on a side note, i cant believe any dr this day and age would not wear gloves. he or his nurse.stupiddddddd

[Raf]

I was diagnosed more than 4 years ago and so far I have had very few issues disclosing to family, close friends and medical personnel. However, I felt like I was loosing it today when I had to fill out a form at a dental clinic  (I had been referred to that clinic by my dentist for an evaluation).On the medical questionnaire they requested I fill out, I had to indicate if I had any of the  medical conditions on the list, and one of them was "AIDS/ Or the AIDS Virus".

I indicated my status, and immediately started feeling very uncomfortable. It brought back memories, questions and regrets.


That just got me wondering how long I still have to go. I had started feeling comfortable with me ......Do you ever get these setbacks?

Thanks.
K

I remember my last visit to the dentist, back in january 2010. This dentist in particular treats some of my near relatives (my cousins go with her). I thought I was ready and when I read the words on the form regarding HIV...I freaked out completely, this doctor treats some people who I don't want to know my status...so I didn't check the box. I saw her a couple of times...but after that I decided to stop seeing her (she still ask my mom about me, about why I stopped seeing her. I told my mom to say that it was because I had financial problems) and right now I'm looking for another dentist.

This time I'll make sure that he (or she) doesn't know any people I know, and I'll disclose my status. I'll try to not freak, but it's hard. It's been 3 years, and I'm still unable to accept this damned virus. And even worst, I have to look for a health insurance, and I don't know if I ever get one because of my status, and I certainly don't want to pay for one that don't cover me when I need it the most.

So yeah karry, you're not alone on this. at least you were able to disclose your status, the last time I couldn't do it. But I'll try my best to not repeat this again.

[tednlou2]

I agree it is best to let docs and dentists know.  Whether you should dislcose to an x-ray tech is another story.  I could understand someone living in a small town not wanting to disclose--a town where most everyone you know shares the same docs and dentists.  Obviously, it would still be in your best interest to disclose even in a small town, and hope the doc or medical staff doesn't go telling everyone--if you don't want friends and family to know.  So, I'd have a lot of understanding with the hesitation to disclose in Mayberry.   

[skeebo1969]

I was diagnosed more than 4 years ago and so far I have had very few issues disclosing to family, close friends and medical personnel. However, I felt like I was loosing it today when I had to fill out a form at a dental clinic  (I had been referred to that clinic by my dentist for an evaluation).On the medical questionnaire they requested I fill out, I had to indicate if I had any of the  medical conditions on the list, and one of them was "AIDS/ Or the AIDS Virus".

I indicated my status, and immediately started feeling very uncomfortable. It brought back memories, questions and regrets.


That just got me wondering how long I still have to go. I had started feeling comfortable with me ......Do you ever get these setbacks?

Thanks.
K

  No, I no longer get setbacks regarding discloser.  I may have encountered some nervousness early on, but after disclosing so often, and getting to a point in my life where I don't care what others think about me being HIV+, it's become a hell of a lot easier for me...   It's ironic in a way that you asked, because I have really become aware of this the past few days -- just how comfortable I am.   

  I was at this place (some may know) and I yelled down a corridor full of fellow patients at a nurse to make sure I had my HIV meds at both 9 AM and PM.  When we had free time, I interacted freely without any worries.  If someone was avoiding me I didn't notice.... cuz I simply didn't pay attention, never really crossed my mind looking back at it.

   When the counselor asked how I felt about my HIV I told her, "My numbers are great, so I can't complain".  Only now do I really understand what she was probably getting at... What a light bulb moment you have brought me, thx.

  To be honest it took a while to get to this point.  With that said though, it only begins when you start disclosing your own status without worry of judgement from others.  Those that don't do so won't even experience what you have perceived as a setback.  It's not, it's normal for some.

  You did the right thing by disclosing to your dentist, I can't stress this enough.  Regardless if you disclose or not, the dentist and assistants will take the proper measures to protect themselves from what little risk  they have.  Rember not everyone knows their status.

  You only disclose for your own benefit.   You're basically giving them a heads up to be on the look out for anything going South in your Mouth.  (poet and didn't know it)

   But yeah... I even tell my eye doctor about my HIV and CMV infection.  Fortunately for me, he has some knowledge regarding both as his information has been in line with what I have read here on these forums. 

   I may have rambled a bit... dunno if it helped.  Hope so...

   Skeebo

[mecch]

My issue here is not about actually disclosing...its more like the feelings that came after it, and how I need to manage them from here and move on.
K.

So maybe now we have all discussed this issue enough: "disclose to the doctor, or not."

The real issue seems to be the feelings that came after disclosure, and you said in your first post, it was thinking back, questions and regrets, etc.

Care to discuss that some more? 

Is it "how you got" HIV that bugs you.  Or is it that you are HIV+?  Or is it many things?

You know people here are very different in how they deal with

How I got it

How I reacted THEN, when I was diagnosed

How it changed my life THEN - relations, self-esteem, etc etc etc.

How I live with the status NOW.

Maybe if you care to, you can discuss what exactly it is that weighs on you.

[mecch]

Maybe think about the situation in which disclosure came up and what it might specifically call up for discomfort.

Here's a little example.  One of the things that I freaked out about when I seroconverted, and within a short time, went on HAART - was MONEY.  All my life, most of the years I have been anxious about money.  

So, in the context of HIV, I lived in NY and in the 80's and 90's and I saw people have very different experiences of HIV based on how much money they had or didn't.   Now I have lived in a much more secure country for quite awhile but I always react with this American dread about the lack of a safety net.  So when I went to get my HAART at the pharmacy, I was thrilled that I was going to feel better soon, but was trembling in fear about the price because I wasn't sure exactly how it would all work out with health insurance.  I was thinking back to the crap I saw in the USA, and I was also thinking forward in my own life - oh jeez, what if I don't always live here, what if the insurance system collapses, etc etc.  So some real and some unrealistic fears, that might or might not have anything really to do with me.

Well, long story short, i did have a few conversations over the next months about the cost of drugs - 1) with the pharmacist - I explained the situation in the USA and my own fears, just in a conversation.  It helped me feel more comfortable.  And I guess she learned some things.  Also she's always since been really careful about taking the fear out of my drug billing.  2) Another person I remind sometimes is my shrink - making sure she remembers about the fear an American-raised person can have about medical care and costs, since this deep fear just isn't known here in Switzerland.  

The cost of drugs was a trigger to many thoughts. And then I picked it apart and also discussed these thoughts with people who could relate, or maybe even help.

I remember when I walked out of the pharmacy with two months of drugs in my knapsack I ran into a friend. I asked him to come drink a coffee and I disclosed about my recent seroconversion blah blah blah but I remember specifically I needed to talk to someone right away, and he was there, and it was because I was freaking out that there was a fortune in drugs in my bag, and that I would have to take them forever...  Of course my friend wasn't the least concerned about the cost issue, much more about my seroconversion generally.  So - pharmacist, shrink, and friends (who were blase about the cost), all helped me chill out this past-based fear of mine.

Nobody can anticipate exactly what past things a present situation is going to call up, only you can try to discover exactly what it is and discuss it with yourself or with others, for instance in this safe place, and try to get more comfortable with it.

[karry]

I am very happy I brought this up here for discussion because your experiences and insights are giving me a lot of comfort as I read through your responses. I am grateful this site exists for moments like these when I can find real support from people who have been there and are facing the same issues.

When I filled out the form I had sudden flashbacks: I know when and who infected me. I know before we had sex, I had discussed at length sexual health and he had told me he was negative( I later found out he knew for a while and I am not the only person he infected). We had safe sex, and I remember this one time we started without a condom, and afterwards stopped to use one. Was that when I was infected?...I strongly believe and know that yes, it must have been then, because I had my negative results in September, met him in October and by February I was diagnosed with HIV.

The frustration with myself that I trusted him....that in the spur of the moment because of passion I could not say "NO...Stop and wear a condom"....and for that, the price I have to pay is living with HIV.

This happened to me in a country where I could not bring him to court even if I wanted to, because when they discovered I was positive, they told me they will only give me 6 months to complete my studies and leave because " Russia does not pay for HIV meds for foreigners", and its also a policy that any foreign student who tests positive is deported to their country of origin. I however questioned him at length, and he has always denied.

I am in a good place now...I have a good job, and I have the best medical insurance and my doctors are just awesome.


My issue is the blame game I play with myself. That is what came back to my mind at the dentist office on Tuesday. I had thought I had come to terms with myself having been  careless  enough to have trusted him. I have also tried to contact him recently to talk to him about what he did, but he is no where to be found.

Thanks.
K

[mecch]

If it helps, a good percentage of HIV+ people share a similar experience. Trust gone awry and little mistakes in safe-sex rules. Not everyone but at least some.  Its really human to slip up.  You sound like a together person and you certainly mostly protected yourself.  You mustn't beat yourself up now and for the future for a human error.  What if you had gotten gonorrhea instead of HIV?  Problem would have been long solved and you wouldn't be putting yourself in such judgement.
Of course, its easy to say this but to feel equanimity with yourself, yeah, that takes time it seems. 

Do you know the comic Sarah Silverman? She takes on HIV sometimes and its pretty offensive but sometimes incisive. You know the saying, when life gives your lemons make lemonade?  She said once, When life gives you AIDS, make lemonaids.  That joke I thought was funny and truthful cause we all just got to get on with it, even when we have doubts and fears, etc etc.