How to accept the guilt and live on?
June 27, 2024 11:07 PM Subscribe
Took PEP for 28 days and it destroyed my health/life
Back in November I was on PEP (Aluvia and Truvada) to prevent a hiv infection for 28 days after a broken condom. I had GI problems (bloating, right-side pain) for almost the whole time of taking it although to a much lesser extent after week 2. I was hoping all the issues would clear out after the treatment and they almost did, but my stomach would feel strange from time to time. My blood tests during PEP and after were perfect. Almost four months after finishing PEP I started getting heartburn for the first time in my life and just recently got diagnosed with a hiatal hernia. I've been obsessing about whether I caused this with PEP since end of March and the guilt is killing me. Deep down I know the bloating caused by indigestion caused by PEP did it. Therapy and easy fixes as 'you did what you thought was best at the time' don't work. Therapy does't work. I feel the need to punish myself. I trusted doctors. Three of them told me my side effects were perfectly normal. It doesn't help knowing that the risk of contracting HIV was really low.
I don't know how to fake the rest of my life. All I see whatever I do is an imaginary healthy me who should be here now.
I come from Bosnia, and I thought the bad days were long behind. I thought the bloody war was the worst thing I had to go through. Not even close. This is by far the worst period in my life. I really wish I had died on March 28, 2024.
Thanks for reading!
Back in November I was on PEP (Aluvia and Truvada) to prevent a hiv infection for 28 days after a broken condom. I had GI problems (bloating, right-side pain) for almost the whole time of taking it although to a much lesser extent after week 2. I was hoping all the issues would clear out after the treatment and they almost did, but my stomach would feel strange from time to time. My blood tests during PEP and after were perfect. Almost four months after finishing PEP I started getting heartburn for the first time in my life and just recently got diagnosed with a hiatal hernia. I've been obsessing about whether I caused this with PEP since end of March and the guilt is killing me. Deep down I know the bloating caused by indigestion caused by PEP did it. Therapy and easy fixes as 'you did what you thought was best at the time' don't work. Therapy does't work. I feel the need to punish myself. I trusted doctors. Three of them told me my side effects were perfectly normal. It doesn't help knowing that the risk of contracting HIV was really low.
I don't know how to fake the rest of my life. All I see whatever I do is an imaginary healthy me who should be here now.
I come from Bosnia, and I thought the bad days were long behind. I thought the bloody war was the worst thing I had to go through. Not even close. This is by far the worst period in my life. I really wish I had died on March 28, 2024.
Thanks for reading!
I realize you are having a huge emotional reaction, not a rational one. But perhaps try to spend a bit of time with facts around this.
Deep down I know the bloating caused by indigestion caused by PEP did it.
Have you actually spoken to your doctors about this theory? What did they say? I am not a doctor. But even just cursory research suggests a) this is a common condition that affects half the population by age 50, and b) that it is most likely caused by chronic straining.
If you are old enough to remember the early 90s you are at least approaching middle age and a couple of weeks of indigestion is not chronic straining....at least consider the possibility that PEP and the later onset of your symptoms is complete coincidence. It is much more likely, that you would have started to suffer from heartburn in 2024 irrespective of the earlier short-term indigestion you suffered on PEP.
All I see whatever I do is an imaginary healthy me who should be here now.
You're not unhealthy though. You have weakened tissue allowing your body to make you uncomfortable from time to time while doing what it normally does. Get help with your physical symptoms, sure. But you're not miserable because of your hernia, you're miserable because you have significant anxiety about your health. As you age, you will experience more new to you symptoms. So your main focus should be getting help with that anxiety/outsized emotional reactions to health matters.
posted by koahiatamadl at 12:28 AM on June 28 [15 favorites]
Deep down I know the bloating caused by indigestion caused by PEP did it.
Have you actually spoken to your doctors about this theory? What did they say? I am not a doctor. But even just cursory research suggests a) this is a common condition that affects half the population by age 50, and b) that it is most likely caused by chronic straining.
If you are old enough to remember the early 90s you are at least approaching middle age and a couple of weeks of indigestion is not chronic straining....at least consider the possibility that PEP and the later onset of your symptoms is complete coincidence. It is much more likely, that you would have started to suffer from heartburn in 2024 irrespective of the earlier short-term indigestion you suffered on PEP.
All I see whatever I do is an imaginary healthy me who should be here now.
You're not unhealthy though. You have weakened tissue allowing your body to make you uncomfortable from time to time while doing what it normally does. Get help with your physical symptoms, sure. But you're not miserable because of your hernia, you're miserable because you have significant anxiety about your health. As you age, you will experience more new to you symptoms. So your main focus should be getting help with that anxiety/outsized emotional reactions to health matters.
posted by koahiatamadl at 12:28 AM on June 28 [15 favorites]
Best answer: > Almost four months after finishing PEP I started getting heartburn for the first time in my life and just recently got diagnosed with a hiatal hernia.
Something that starts literally 4 months after completing the treatment, and is not a known side effect of the treatment anyway, is simply not caused by that treatment. That is not a rational conclusion in any way. How would PEP cause a hiatal hernia, which is a change in the physical configuration of your stomach & esophagus in the area where it passes through the diaphragm.
The answer is, it wouldn't.
Now what WOULD cause those kinds of symptoms?
The simple answer is, GERD, heartburn, hiatal hernia, and related issues are super common in the human race and become more common as we age. I've been on some GERD forums since I developed it 6 or 8 years ago, and you would think everyone in the world is on those forums. These are practically universal maladies of the human race.
Even if, let's just say, PEP set off GI issues for you that then bubbled along for several months and then at that later time came to a head with the GERD and hiatal hernia (though again I have a difficult time understanding how PEP is going to change the physical configuration of your stomach, esophagus, and diaphragm, but let's just say for the sake of argument that it did).
#1. You and really no one could have predicted this very unlikely and strange outcome.
#2. One reason this unlikely sequence of events happened to you, is almost certainly that you already had a susceptibility to GERD and, most probably, already had the hiatal hernia that was just waiting to be turned into a front-burner issue by just about anything that happened to come along that happened to disrupt your happy GI system for a little while.
So - if it hadn't been the PEP it would have been something else that came along a month or two or a year or two later, you can bet on it. It would have been an antibiotic that you've taken 6 times before but this time happened to upset your gut, or a fish dinner, or a night when you drank three drinks instead of two, or whatever.
This was a problem just waiting to happen and if one thing didn't happen to trigger it, something else certainly would have.
I'm trying to be blunt with you here, because you are clearly dealing with two different issues and each one has a very different solution:
#1. You are dealing with cognitive distortions related to your health. So you need to find some help for that - therapy, maybe anti-depressant treatment, or help along those lines. This will really help you right now, so please pursue this.
#2. You are dealing with GERD, heartburn, and other symptoms of hiatal hernia. These are very common, as I mentioned above, but they are also quite painful, sometimes extremely painful, and can even be debilitating. They can make you feel just terrible - and ruin your quality and enjoyment of life.
The good news about #2 though: It is very, very treatable. You may be pretty miserable now, but there is a good chance that when you get a handle on this you will feel a LOT better pretty soon. And there is a very high chance that, with the right treatment, diet, and so on, your GI issues will heal themselves within a few months or at the outside, a year or two.
This is the most common course of events for GI issues.
Even if your doctors haven't done anything about the GERD yet, you can start self treating it and that can make a HUGE difference in how you feel in a short period of time. This page has some common/recommended approaches. This is very, very treatable, so get busy treating it - don't fall into a pit of despair.
Also I recommend the GERD subreddit.
Get out of the spiral; get treatment for both issues #1 and #2 and I'll wager within a few weeks or certainly a few months you'll feel very, very different about life.
posted by flug at 12:56 AM on June 28 [51 favorites]
Something that starts literally 4 months after completing the treatment, and is not a known side effect of the treatment anyway, is simply not caused by that treatment. That is not a rational conclusion in any way. How would PEP cause a hiatal hernia, which is a change in the physical configuration of your stomach & esophagus in the area where it passes through the diaphragm.
The answer is, it wouldn't.
Now what WOULD cause those kinds of symptoms?
The simple answer is, GERD, heartburn, hiatal hernia, and related issues are super common in the human race and become more common as we age. I've been on some GERD forums since I developed it 6 or 8 years ago, and you would think everyone in the world is on those forums. These are practically universal maladies of the human race.
Even if, let's just say, PEP set off GI issues for you that then bubbled along for several months and then at that later time came to a head with the GERD and hiatal hernia (though again I have a difficult time understanding how PEP is going to change the physical configuration of your stomach, esophagus, and diaphragm, but let's just say for the sake of argument that it did).
#1. You and really no one could have predicted this very unlikely and strange outcome.
#2. One reason this unlikely sequence of events happened to you, is almost certainly that you already had a susceptibility to GERD and, most probably, already had the hiatal hernia that was just waiting to be turned into a front-burner issue by just about anything that happened to come along that happened to disrupt your happy GI system for a little while.
So - if it hadn't been the PEP it would have been something else that came along a month or two or a year or two later, you can bet on it. It would have been an antibiotic that you've taken 6 times before but this time happened to upset your gut, or a fish dinner, or a night when you drank three drinks instead of two, or whatever.
This was a problem just waiting to happen and if one thing didn't happen to trigger it, something else certainly would have.
I'm trying to be blunt with you here, because you are clearly dealing with two different issues and each one has a very different solution:
#1. You are dealing with cognitive distortions related to your health. So you need to find some help for that - therapy, maybe anti-depressant treatment, or help along those lines. This will really help you right now, so please pursue this.
#2. You are dealing with GERD, heartburn, and other symptoms of hiatal hernia. These are very common, as I mentioned above, but they are also quite painful, sometimes extremely painful, and can even be debilitating. They can make you feel just terrible - and ruin your quality and enjoyment of life.
The good news about #2 though: It is very, very treatable. You may be pretty miserable now, but there is a good chance that when you get a handle on this you will feel a LOT better pretty soon. And there is a very high chance that, with the right treatment, diet, and so on, your GI issues will heal themselves within a few months or at the outside, a year or two.
This is the most common course of events for GI issues.
Even if your doctors haven't done anything about the GERD yet, you can start self treating it and that can make a HUGE difference in how you feel in a short period of time. This page has some common/recommended approaches. This is very, very treatable, so get busy treating it - don't fall into a pit of despair.
Also I recommend the GERD subreddit.
Get out of the spiral; get treatment for both issues #1 and #2 and I'll wager within a few weeks or certainly a few months you'll feel very, very different about life.
posted by flug at 12:56 AM on June 28 [51 favorites]
Best answer: You say your health has been ruined. It looks like you're dealing with two types of health: physical and mental.
Physical: You have a hiatal hernia? That should be treatable. Get it treated. This is the kind of thing doctors actually know what to do with. It might take some time, cost some money, and not be fun, but then you'll be better. Do it and move on with with your life. I'm not saying that lightly - I'm saying that fixing it and moving on is a thing that is really possible to do. (And I am saying this as someone with disabling health issues that are not treatable yet. Even problems like that are not the end of the world, it turns out.)
Mental: I know the feeling of "what the hell have I done" and "how could I have done this?" And the pit in the stomach sense of "this didn't have to happen, how did I make this happen", "how can something go from fine to broken so easily", "things were fine and I ruined them and I will never be able to recover what was lost," "I'm so stupid", "other people wouldn't have made this mistake," etc.
The thing is, pretty much everyone knows these feelings. If someone's lucky enough to not have experienced them yet, they probably will soon enough. None of us knows the consequences of what we're doing before we do it, everything we do has a risk, and as a result all of us get it wrong part of the time. And sometimes the consequences can feel shocking and surreal, like there's a huge dissonance between how the world is supposed to be and how it now is. The chasm between what we imagine is supposed to be and what is actually real is so huge, and the unfairness and fragility of existing is so stark and terrifying, that we make up stories to deal with it psychologically - stories like "I deserve this" and "it's my fault". To learn that it's not your fault, that you could do everything "perfectly" and still wind up in this situation, is really difficult because it's so unfair. But accepting that life will be unfair and fragile - that there's no way to avoid this - is really important.
I don't know if taking PEP caused, or in some way contributed to, your hernia. Maybe it did? Probably not? Does it really, truly matter, or is it more important to just take care of this and move on? Either way, two things are certain. One is that you will make mistakes in your life, not because you're bad or stupid but because every living person does and life is fragile and not fair. The other is that even if you make all the "best" choices and decisions, your body will still go through many more things like this over the course of your life, your health will still change and diminish in many ways, and a lot of this will feel surreal and shocking. That is also something every living person experiences, and it's also because life is fragile and not fair.
There's no way to walk correctly through life in such a way that you don't make mistakes, don't lose things, don't have surreal and unexpected health issues. Maybe some people give off the impression, to outsiders who don't know all the details of their lives, that they've found that magic path, so you think it's possible; but they haven't, and it's not.
I mean, if you're beating yourself up for not choosing right - who do you think you are, god? Maybe a god could make every choice correctly, but none of us is god, and there is a big lack of humility in the idea that we should be able to live perfectly and and always make the right choices, god-style. Because we're the main characters in our lives, it's easy to lose sight of the fact that we're not actually all-knowing and all-powerful. But we're small people in an impersonal universe who are doing our best, and because we're not gods we can't actually create perfection.
Anyway, you say you want to punish yourself and that you think it would have been better if you weren't alive. I hope very much that you're being hyperbolic, but either way please recognize that both of those ideas are more of a health problem (and a happiness problem) than a mechanical issue like a hernia. They're also much harder to find effective treatment for, but I hope you do.
Life is fragile and not fair, but it also has so many good parts. It's a mix of a million different elements and experiences, some very good and some very bad and some in the middle, and everybody gets an extended taste of all of those categories. The trick is to learn to expect that, to understand that it's not just you, and to make peace with it. Because what is the alternative to making peace?
posted by trig at 1:14 AM on June 28 [21 favorites]
Physical: You have a hiatal hernia? That should be treatable. Get it treated. This is the kind of thing doctors actually know what to do with. It might take some time, cost some money, and not be fun, but then you'll be better. Do it and move on with with your life. I'm not saying that lightly - I'm saying that fixing it and moving on is a thing that is really possible to do. (And I am saying this as someone with disabling health issues that are not treatable yet. Even problems like that are not the end of the world, it turns out.)
Mental: I know the feeling of "what the hell have I done" and "how could I have done this?" And the pit in the stomach sense of "this didn't have to happen, how did I make this happen", "how can something go from fine to broken so easily", "things were fine and I ruined them and I will never be able to recover what was lost," "I'm so stupid", "other people wouldn't have made this mistake," etc.
The thing is, pretty much everyone knows these feelings. If someone's lucky enough to not have experienced them yet, they probably will soon enough. None of us knows the consequences of what we're doing before we do it, everything we do has a risk, and as a result all of us get it wrong part of the time. And sometimes the consequences can feel shocking and surreal, like there's a huge dissonance between how the world is supposed to be and how it now is. The chasm between what we imagine is supposed to be and what is actually real is so huge, and the unfairness and fragility of existing is so stark and terrifying, that we make up stories to deal with it psychologically - stories like "I deserve this" and "it's my fault". To learn that it's not your fault, that you could do everything "perfectly" and still wind up in this situation, is really difficult because it's so unfair. But accepting that life will be unfair and fragile - that there's no way to avoid this - is really important.
I don't know if taking PEP caused, or in some way contributed to, your hernia. Maybe it did? Probably not? Does it really, truly matter, or is it more important to just take care of this and move on? Either way, two things are certain. One is that you will make mistakes in your life, not because you're bad or stupid but because every living person does and life is fragile and not fair. The other is that even if you make all the "best" choices and decisions, your body will still go through many more things like this over the course of your life, your health will still change and diminish in many ways, and a lot of this will feel surreal and shocking. That is also something every living person experiences, and it's also because life is fragile and not fair.
There's no way to walk correctly through life in such a way that you don't make mistakes, don't lose things, don't have surreal and unexpected health issues. Maybe some people give off the impression, to outsiders who don't know all the details of their lives, that they've found that magic path, so you think it's possible; but they haven't, and it's not.
I mean, if you're beating yourself up for not choosing right - who do you think you are, god? Maybe a god could make every choice correctly, but none of us is god, and there is a big lack of humility in the idea that we should be able to live perfectly and and always make the right choices, god-style. Because we're the main characters in our lives, it's easy to lose sight of the fact that we're not actually all-knowing and all-powerful. But we're small people in an impersonal universe who are doing our best, and because we're not gods we can't actually create perfection.
Anyway, you say you want to punish yourself and that you think it would have been better if you weren't alive. I hope very much that you're being hyperbolic, but either way please recognize that both of those ideas are more of a health problem (and a happiness problem) than a mechanical issue like a hernia. They're also much harder to find effective treatment for, but I hope you do.
Life is fragile and not fair, but it also has so many good parts. It's a mix of a million different elements and experiences, some very good and some very bad and some in the middle, and everybody gets an extended taste of all of those categories. The trick is to learn to expect that, to understand that it's not just you, and to make peace with it. Because what is the alternative to making peace?
posted by trig at 1:14 AM on June 28 [21 favorites]
It's more likely to be the anxiety that's ruining your health, not the PEP. I managed my intense anxiety just fine for 27 years without any physical symptoms, then over a few months I developed GI issues that were obviously triggered by stress and eventually diagnosed as IBS. I still have IBS a decade later, but I manage it much better because I'm treating the source: my mental health issues.
You clearly have a lot of anxiety and stress--regardless of what's causing your hiatal hernia, your mental health will be negatively affecting your physical state. Work on that first and everything else will feel at least a bit better automatically.
posted by guessthis at 4:26 AM on June 28 [3 favorites]
You clearly have a lot of anxiety and stress--regardless of what's causing your hiatal hernia, your mental health will be negatively affecting your physical state. Work on that first and everything else will feel at least a bit better automatically.
posted by guessthis at 4:26 AM on June 28 [3 favorites]
Best answer: If you're going to picture the imaginary "healthy" you, I think it's crucial to also acknowledge other potential outcomes. One version got HIV despite the low risk and deeply regrets not choosing what the doctor recommended. Another's test was negative but, while waiting for it, they became increasingly anxious and still suffer from intrusive thoughts about it. Another several who made varying decisions went for walks somewhere over these months and got hit by cars. Et cetera. Literally none of those imaginary yous were able to foretell the future and know how their actions would come out. If your current issues are somehow related to PEP, there's no way that all of the yous could have avoided being where you yourself are now since taking the medicine was a reasonable choice given the information available at the time.
posted by teremala at 5:09 AM on June 28 [6 favorites]
posted by teremala at 5:09 AM on June 28 [6 favorites]
Hi, I'm a chronic illness patient who was diagnosed at 18 and has never had an adult healthy me to imagine getting back to. I have some book recommendations for you to consider if your illness is chronic and you don't get back to what you consider full health ever:
The Invisible Kingdom: Reimagining Chronic Illness, by Meghan O'Rourke;
How to Live Well with Chronic Pain and Illness: A Mindful Guide, by Toni Bernhard; and
How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers; also by Toni Bernhard.
I agree with other commenters that you should also treat your anxiety; I know there have been cases where mine has made my physical symptoms worse, including GI stuff. I am on low-dose anxiety meds in addition to physical meds. Anxiety meds have improved my quality of life immensely. It's not perfect but it's a lot better.
Wishing you better health and mental relief. This is really hard stuff to deal with. Sometimes your body doesn't work right and you did everything you were supposed to do and it's just not fair. It sucks. Please get some help so you can live a better life even with the sucking.
posted by gentlyepigrams at 6:06 AM on June 28 [10 favorites]
The Invisible Kingdom: Reimagining Chronic Illness, by Meghan O'Rourke;
How to Live Well with Chronic Pain and Illness: A Mindful Guide, by Toni Bernhard; and
How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers; also by Toni Bernhard.
I agree with other commenters that you should also treat your anxiety; I know there have been cases where mine has made my physical symptoms worse, including GI stuff. I am on low-dose anxiety meds in addition to physical meds. Anxiety meds have improved my quality of life immensely. It's not perfect but it's a lot better.
Wishing you better health and mental relief. This is really hard stuff to deal with. Sometimes your body doesn't work right and you did everything you were supposed to do and it's just not fair. It sucks. Please get some help so you can live a better life even with the sucking.
posted by gentlyepigrams at 6:06 AM on June 28 [10 favorites]
I feel for you and am sorry you're going through this! And, I am curious:
Why are you blaming yourself so much? What is the reason? You took medicine to protect your health and it had a side effect (IF it had a side effect). Why now be so guilty, so angry at yourself, instead of having compassion for yourself as the victim of an unforeseeable circumstance?
I ask (not to berate you) but both because I think on the surface, it's unreasonable, and because I think if you can find the Why, it will unlock a pathway to self-forgiveness. Often, even if the momentary reaction seems unreasonable, there's an underlying real thing worth addressing, or at least knowing about.
For instance, someone might hypothetically realize "when i first took PEP, I KNEW the side effect feeling was worse than the doctors were acknowledging, but instead of standing up for myself, I brushed it aside and forced myself to go through that. I wish I had stood up to the doctors and protected myself. But I didn't, and now I'm so pissed at myself."
In that example, the person's real issue is less a belief that they should have psychically known the future and more about listening to and taking action on the basis of their inner knowing. While they don't deserve that self-recrimination, it's also understandable that they'd be holding onto it, because part of themselves wants an assurance that next time, they'll take their own concerns seriously and take action to protect themselves. In my experience, sometime meeting that core reason head on -- listening to it, validating it - is all it takes. And then it becomes a kernel of awareness* ("I need to stand up for myself even when authorities tell me my experience isn't real") that can be useful in the future.
I doubt this whole "authorities" example is a perfect match for you. But I wonder if by trying to get to the root of the guilt you might be able to learn why you're hanging onto it, take what's useful from it, and then be released from its grip.
* As a side note, not every kernel is actionable advice like that, some is just self-awareness about what sets oneself off. But even knowing that can help people defuse future experiences in their early stages.
One last thought: sometimes the mental truly is an outgrowth of the physical. I wouldn't even go through all that introspection if I suspected that my real problem was something like that I didn't get enough sleep (a real anxiety and self-criticism trigger). I'd try to just go to bed. For you, the pain and/or the disruption in your gut biome (which, science is increasingly finding has impacts on mental health) might be the main reason. In that case, it could be best to just watch some funny movies and hang in there until you're able to start feeling better. Wishing you the best!
posted by slidell at 7:05 AM on June 28 [4 favorites]
Why are you blaming yourself so much? What is the reason? You took medicine to protect your health and it had a side effect (IF it had a side effect). Why now be so guilty, so angry at yourself, instead of having compassion for yourself as the victim of an unforeseeable circumstance?
I ask (not to berate you) but both because I think on the surface, it's unreasonable, and because I think if you can find the Why, it will unlock a pathway to self-forgiveness. Often, even if the momentary reaction seems unreasonable, there's an underlying real thing worth addressing, or at least knowing about.
For instance, someone might hypothetically realize "when i first took PEP, I KNEW the side effect feeling was worse than the doctors were acknowledging, but instead of standing up for myself, I brushed it aside and forced myself to go through that. I wish I had stood up to the doctors and protected myself. But I didn't, and now I'm so pissed at myself."
In that example, the person's real issue is less a belief that they should have psychically known the future and more about listening to and taking action on the basis of their inner knowing. While they don't deserve that self-recrimination, it's also understandable that they'd be holding onto it, because part of themselves wants an assurance that next time, they'll take their own concerns seriously and take action to protect themselves. In my experience, sometime meeting that core reason head on -- listening to it, validating it - is all it takes. And then it becomes a kernel of awareness* ("I need to stand up for myself even when authorities tell me my experience isn't real") that can be useful in the future.
I doubt this whole "authorities" example is a perfect match for you. But I wonder if by trying to get to the root of the guilt you might be able to learn why you're hanging onto it, take what's useful from it, and then be released from its grip.
* As a side note, not every kernel is actionable advice like that, some is just self-awareness about what sets oneself off. But even knowing that can help people defuse future experiences in their early stages.
One last thought: sometimes the mental truly is an outgrowth of the physical. I wouldn't even go through all that introspection if I suspected that my real problem was something like that I didn't get enough sleep (a real anxiety and self-criticism trigger). I'd try to just go to bed. For you, the pain and/or the disruption in your gut biome (which, science is increasingly finding has impacts on mental health) might be the main reason. In that case, it could be best to just watch some funny movies and hang in there until you're able to start feeling better. Wishing you the best!
posted by slidell at 7:05 AM on June 28 [4 favorites]
I don't know how to fake the rest of my life. All I see whatever I do is an imaginary healthy me who should be here now. [...] This is by far the worst period in my life. I really wish I had died on March 28, 2024.
To me it sounds like the root of this is ableism, which has been transformed into internalized ableism by your diagnosis. An examination of your beliefs and emotions around disability and disabled people may be the way forward here.
[Edited to add: This is not meant as a criticism of you! Our society is steeped in ableism and it is impossible to avoid absorbing the associated attitudes.]
posted by heatherlogan at 7:27 AM on June 28 [4 favorites]
To me it sounds like the root of this is ableism, which has been transformed into internalized ableism by your diagnosis. An examination of your beliefs and emotions around disability and disabled people may be the way forward here.
[Edited to add: This is not meant as a criticism of you! Our society is steeped in ableism and it is impossible to avoid absorbing the associated attitudes.]
posted by heatherlogan at 7:27 AM on June 28 [4 favorites]
I'm so sorry that you feel so badly. You did the responsible thing and used a condom. But condoms aren't perfect - they're made in a factory and handled by people and used imperfectly, and sometimes they break or slip off - I've had it happen too, several times, which was scary, and I too felt guilty and angry at myself. But it wasn't my fault - it was just a thing that can happen when imperfect humans imperfectly use an imperfect tool. Then you did the responsible and prudent thing again, and took a recommended medication that's also not perfect. And now your human body is doing what bodies do, which is to have problems and hurt sometimes! But what you did was good, and how you handled it was good. Even if the outcome is challenging, it doesn't make what you did bad.
To be honest, this kind of sounds like displaced guilt or trauma is bubbling up. So a couple of questions that might pinpoint where the feelings could be coming from-
In the short term, like the past year - how do you feel about the kind of relationships and sex you were having? Not necessarily the specific moment / encounter when the condom broke, but rather your overall patterns in terms of socializing, dating, and sex. Are there any patterns or incidents from that time that you feel complicated about - for example, do you regret any choices you made or risks you took? (All sex involves some risk!) Or, did anyone assault you? (I hope not! But I know that after an assault, our behavious and feelings can change a lot). Sex and socializing are complex. Is there anything you might wanna discuss with a therapist, or forgive yourself for?
In the longer term - you mentioned the war in Bosnia. I'm so sorry you experienced such a hard time. That's a very traumatic set of experiences that I assume were life-threatening at times. I would expect major ripple effects from that stress, trauma, injustice, displacement, and loss to persist for decades to come. The way you wrote your question made me wonder if you feel Survivor Guilt that you lived when so many other people didn't.
Could Survivor Guilt be compounding your feelings? Maybe about the broken condom - like a feeling of "How could I expose myself to that risk?", or the stomach issues, as if you lived only to now "damage your body" or you "aren't living well enough" to somehow "justify" your luck in making it out of Bosnia alive? I hope you can see when I write it out that those aren't fair things to put on yourself.
The final thing I want to say, if you are feeling guilt, for what it's worth, this Internet Stranger wishes you peace and comfort. You deserve to be alive. You deserve to be happy, and have sex, and fun, and take risks, and make mistakes, and be imperfect, and find pleasure. I'm really glad you're here, and you have managed to make a new life, find people to connect with, and experience fun and pleasure (among other times that are hard, like this moment). This is a hard moment that's affecting you in a big way, but it will pass, and you will feel better eventually, and I hope you'll seek the help you need to get there.
Enjoying your life is the best tribute to being alive!
posted by nouvelle-personne at 8:33 AM on June 28 [12 favorites]
To be honest, this kind of sounds like displaced guilt or trauma is bubbling up. So a couple of questions that might pinpoint where the feelings could be coming from-
In the short term, like the past year - how do you feel about the kind of relationships and sex you were having? Not necessarily the specific moment / encounter when the condom broke, but rather your overall patterns in terms of socializing, dating, and sex. Are there any patterns or incidents from that time that you feel complicated about - for example, do you regret any choices you made or risks you took? (All sex involves some risk!) Or, did anyone assault you? (I hope not! But I know that after an assault, our behavious and feelings can change a lot). Sex and socializing are complex. Is there anything you might wanna discuss with a therapist, or forgive yourself for?
In the longer term - you mentioned the war in Bosnia. I'm so sorry you experienced such a hard time. That's a very traumatic set of experiences that I assume were life-threatening at times. I would expect major ripple effects from that stress, trauma, injustice, displacement, and loss to persist for decades to come. The way you wrote your question made me wonder if you feel Survivor Guilt that you lived when so many other people didn't.
Could Survivor Guilt be compounding your feelings? Maybe about the broken condom - like a feeling of "How could I expose myself to that risk?", or the stomach issues, as if you lived only to now "damage your body" or you "aren't living well enough" to somehow "justify" your luck in making it out of Bosnia alive? I hope you can see when I write it out that those aren't fair things to put on yourself.
The final thing I want to say, if you are feeling guilt, for what it's worth, this Internet Stranger wishes you peace and comfort. You deserve to be alive. You deserve to be happy, and have sex, and fun, and take risks, and make mistakes, and be imperfect, and find pleasure. I'm really glad you're here, and you have managed to make a new life, find people to connect with, and experience fun and pleasure (among other times that are hard, like this moment). This is a hard moment that's affecting you in a big way, but it will pass, and you will feel better eventually, and I hope you'll seek the help you need to get there.
Enjoying your life is the best tribute to being alive!
posted by nouvelle-personne at 8:33 AM on June 28 [12 favorites]
When you say therapy doesn't help, what kind of therapy are you talking about?
I'm not a therapist but this certainly sounds like a trauma reaction- that feeling that you need to punish yourself stands out to me in particular. If you have a therapist, I would be asking about that and possibly OCD, or maybe switching to a trauma-focused therapist if your current one isn't.
I'm so sorry you're suffering this much, body and mind/emotions alike. Sending good thoughts for you to find the support you need on all fronts.
posted by wormtales at 9:40 AM on June 28 [1 favorite]
I'm not a therapist but this certainly sounds like a trauma reaction- that feeling that you need to punish yourself stands out to me in particular. If you have a therapist, I would be asking about that and possibly OCD, or maybe switching to a trauma-focused therapist if your current one isn't.
I'm so sorry you're suffering this much, body and mind/emotions alike. Sending good thoughts for you to find the support you need on all fronts.
posted by wormtales at 9:40 AM on June 28 [1 favorite]
I want to emphasize what nouvelle-personne noticed as well: listen to the "unrelated" things that come up for you while you are hating on yourself. A lot of the tension, rage, and self-hatred is going to be tied up in one ball connected to the past. Your path to forgiving and treating yourself with kindness will look different if it is, "i always screw up and can't even use a condom right", "I am already a disappointment to my family for being gay", "I should be settled down by now and not having casual sex", "mom always tells me I'm too neurotic and I shouldn't have trusted doctors", "I'm supposed to be perfect now that I'm living for myself AND for the dead", etc.
Basically, imagine walking around with a broken bone in your leg that's mostly endurable as long as you don't jostle it. You just bumped your shin on the coffee table not very hard and it's causing you shooting, crippling pain all the way up your leg, lasting for days. That's worth following up on beyond just trying to put ice on your bruised shin!
posted by Lady Li at 9:40 AM on June 28 [3 favorites]
Basically, imagine walking around with a broken bone in your leg that's mostly endurable as long as you don't jostle it. You just bumped your shin on the coffee table not very hard and it's causing you shooting, crippling pain all the way up your leg, lasting for days. That's worth following up on beyond just trying to put ice on your bruised shin!
posted by Lady Li at 9:40 AM on June 28 [3 favorites]
I've been obsessing about whether I caused this with PEP since end of March and the guilt is killing me. Deep down I know the bloating caused by indigestion caused by PEP did it.
If there's one thing that having experienced and then recovered from psychosis has taught me about knowing stuff deep down, it's that whatever is deepest down is not knowledge, it's feeling, and that if what's "known" deep down is the slightest bit consequential then it's in my best interests to subject it to rigorous reality checking.
And the simple fact is that you do not know any such thing. Four months between the end of your PEP and the onset of your hiatus hernia and GERD is way too long to make a causal connection even likely, let alone certain.
Your issue isn't your well-advised choice to protect yourself against HIV, it's obsessive rumination. The fact and act of ruminating obsessively is what you need to be paying attention to, not the content of it.
posted by flabdablet at 9:55 AM on June 28 [8 favorites]
If there's one thing that having experienced and then recovered from psychosis has taught me about knowing stuff deep down, it's that whatever is deepest down is not knowledge, it's feeling, and that if what's "known" deep down is the slightest bit consequential then it's in my best interests to subject it to rigorous reality checking.
And the simple fact is that you do not know any such thing. Four months between the end of your PEP and the onset of your hiatus hernia and GERD is way too long to make a causal connection even likely, let alone certain.
Your issue isn't your well-advised choice to protect yourself against HIV, it's obsessive rumination. The fact and act of ruminating obsessively is what you need to be paying attention to, not the content of it.
posted by flabdablet at 9:55 AM on June 28 [8 favorites]
All I see whatever I do is an imaginary healthy me who should be here now.
That's a good thing to imagine. What's not good is insisting that the only way to get to there is not to start from here; that's supposed to be a joke, not a life lesson.
posted by flabdablet at 10:02 AM on June 28 [1 favorite]
That's a good thing to imagine. What's not good is insisting that the only way to get to there is not to start from here; that's supposed to be a joke, not a life lesson.
posted by flabdablet at 10:02 AM on June 28 [1 favorite]
Deep down I know the bloating caused by indigestion caused by PEP did it.
As far as mechanisms and biology go, this is .... pretty imaginary, on its own. (I'd be harsher about the science but you absolutely don't need it).
Then there's the correlation vs causation thing. These two events happened near each other in time, and in the general vicinity of your digestive tract -- that's all. Remember that that's the "link" between vaccines and autism , where plenty of people deep down know that one caused the other. It's a strong human urge, to feel like you know.
Your brain is being an utter asshole to you. At the same time, your stomach is also being an asshole. I'm very sorry to hear all of that. I hope you can follow all of the other great suggestions here towards seeking peace in your brain, and that your body will follow suit.
posted by Dashy at 10:10 AM on June 28 [1 favorite]
As far as mechanisms and biology go, this is .... pretty imaginary, on its own. (I'd be harsher about the science but you absolutely don't need it).
Then there's the correlation vs causation thing. These two events happened near each other in time, and in the general vicinity of your digestive tract -- that's all. Remember that that's the "link" between vaccines and autism , where plenty of people deep down know that one caused the other. It's a strong human urge, to feel like you know.
Your brain is being an utter asshole to you. At the same time, your stomach is also being an asshole. I'm very sorry to hear all of that. I hope you can follow all of the other great suggestions here towards seeking peace in your brain, and that your body will follow suit.
posted by Dashy at 10:10 AM on June 28 [1 favorite]
Look, I'm 36 and my life has in fact been altered in horrible ways by a genetic health problem.
But you know what hasn't impacted me in barely any ways? The chronic heartburn and hiatal hernia I've had for the last 10 years. Hiatal hernias and acid reflux are super common. When I got an endoscopy that showed the hiatal hernia, it was basically a big shrug.
So first of all, it seems unlikely this was connected to PEP, but even if it was, so what? A minor chronic problem like acid reflux/hiatal hernia (which are both the kinds of conditions that like most of the world population will end up with at some point in their life) seems like a small price to pay in order to avoid contracting HIV.
What you absolutely do need is mental health treatment. Not b/c a therapist will give you some platitude, but because your thinking around this situation is so wildly distorted and is causing you so much psychic distress that the only one who will be able to help you untangle this is a qualified mental health expert.
posted by litera scripta manet at 7:27 PM on June 28
But you know what hasn't impacted me in barely any ways? The chronic heartburn and hiatal hernia I've had for the last 10 years. Hiatal hernias and acid reflux are super common. When I got an endoscopy that showed the hiatal hernia, it was basically a big shrug.
So first of all, it seems unlikely this was connected to PEP, but even if it was, so what? A minor chronic problem like acid reflux/hiatal hernia (which are both the kinds of conditions that like most of the world population will end up with at some point in their life) seems like a small price to pay in order to avoid contracting HIV.
What you absolutely do need is mental health treatment. Not b/c a therapist will give you some platitude, but because your thinking around this situation is so wildly distorted and is causing you so much psychic distress that the only one who will be able to help you untangle this is a qualified mental health expert.
posted by litera scripta manet at 7:27 PM on June 28
Response by poster: I appreciate every comment here; thank you very much. I do myself question whether PEP was the real cause or not, so it helps to see that most people don't see the connection. It would be much easier for me to accept illness if it weren't for that decision in November, or even if the illness was caused by something I enjoyed doing, like cycling, working out, or even occasional partying :))
I know that I am not getting any younger and that my body can't stay the same and healthy forever, it's just the connection (I see) between the meds and the onset of stomach problems that I'm struggling so much with.
The point is I used to live a very active life and now I suddenly feel like an old man (not that I'm not at almost 50 :)).
Thanks again!
posted by Nnennoo at 12:48 AM on June 29 [1 favorite]
I know that I am not getting any younger and that my body can't stay the same and healthy forever, it's just the connection (I see) between the meds and the onset of stomach problems that I'm struggling so much with.
The point is I used to live a very active life and now I suddenly feel like an old man (not that I'm not at almost 50 :)).
Thanks again!
posted by Nnennoo at 12:48 AM on June 29 [1 favorite]
Best answer: it helps to see that most people don't see the connection
There's an important difference between failing to see a connection and positively assessing the probability of a proposed connection as negligibly low, which is what most people here have done.
I feel the need to punish myself.
The only point of punishment is to reinforce the idea that whatever the punishment is for is unacceptable. Acting on the advice of people who know more about medicine than you do is the opposite of unacceptable; it's just good sense. So you have no call to punish yourself, and the fact that you feel this need is a far more serious health problem than a bit of gastric reflux.
I trusted doctors.
Generally good policy unless the doctors in question are egregiously awful.
Three of them told me my side effects were perfectly normal.
What well-informed reason do you have to doubt that this is so? Presumably doctors would have seen more outcomes of PEP in more people than you have, so how does three of them lying to you make plausible sense?
It doesn't help knowing that the risk of contracting HIV was really low.
The risk of dying in a car accident on any given journey is really low as well. That doesn't make always putting on a seat belt a bad idea.
I don't know how to fake the rest of my life.
Don't fake it, is my best advice there. Take on the project of living it authentically and well instead.
posted by flabdablet at 2:24 AM on June 29 [1 favorite]
There's an important difference between failing to see a connection and positively assessing the probability of a proposed connection as negligibly low, which is what most people here have done.
I feel the need to punish myself.
The only point of punishment is to reinforce the idea that whatever the punishment is for is unacceptable. Acting on the advice of people who know more about medicine than you do is the opposite of unacceptable; it's just good sense. So you have no call to punish yourself, and the fact that you feel this need is a far more serious health problem than a bit of gastric reflux.
I trusted doctors.
Generally good policy unless the doctors in question are egregiously awful.
Three of them told me my side effects were perfectly normal.
What well-informed reason do you have to doubt that this is so? Presumably doctors would have seen more outcomes of PEP in more people than you have, so how does three of them lying to you make plausible sense?
It doesn't help knowing that the risk of contracting HIV was really low.
The risk of dying in a car accident on any given journey is really low as well. That doesn't make always putting on a seat belt a bad idea.
I don't know how to fake the rest of my life.
Don't fake it, is my best advice there. Take on the project of living it authentically and well instead.
posted by flabdablet at 2:24 AM on June 29 [1 favorite]
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Second - there are a million things in the world that can cause bloating and heartburn. Maybe PEP was the trigger. If it had been food poisoning from eating a contaminated salad would you feel the same way? (Heck, maybe it was.)
Third... Maybe your anxiety did cause this, by making you take meds unnecessarily. You're definitely showing an outsize emotional reaction now. Maybe you can use this as a push to treat your anxiety?
posted by Lady Li at 11:40 PM on June 27 [20 favorites]