how to deal with the un-deal-with-able
December 22, 2014 3:45 PM Subscribe
This is sort of a meta-question about how to deal with the un-deal-with-able, because I know there's no real answer here.
My doctor believes that I have an immune disorder. It's not a sure thing, but that's their suspicion based on some health problems I've been having. I just don't know what to do with myself.
I had blood drawn a few days ago and I'm now stuck in limbo waiting for test results to come back. They're checking for HIV, hep C, and a few other common causes. I've had these exact tests done before and they came back negative but my doctor believes there must be a false negative in there so we're doing the tests again. I won't get my results for another two weeks, leaving me ample time to construct detailed worst-case scenarios where I'm dying in a hospital bed, alone, for the rest of my life. Fantastic way to spend the holidays, right?
I have been living in a heightened state of anxiety for the past few days, and on-and-off for the past year, due to health issues. I am already an anxiety-prone person, but this is different. I actually passed out when the doctors told me they wanted to run the tests again.
I am also dealing with some physical pain and limited mobility from a surgery a few days ago. I don't have much motivation to do anything. I can't exercise, which is my usual means of coping with stress. The pain is non-obvious, so I just haven't told anyone.
I just... cannot relax. I don't feel depressed. I've been depressed before, but this is different. My problem isn't that I'm overwhelmed with emotion.. I just have no way of interfacing with my emotions right now. It's like... I'm not really here. I'm floating somewhere overhead, watching this movie playing out, waiting to see what happens. I feel nothing. Just a dull, distant anger.
I'm sick of feeling alone and broken and helpless and weak. I have no one to talk to. I have no close friends or a partner to confide in. There is only person in my life who knows what's going on, but they are not well-equipped to help me. The only advice I've gotten is generic "be positive" type stuff. I hate this advice. This person means well but cannot appreciate how scared I am. How can you be positive when you're waiting to find out if you have HIV? There's nothing positive about it.
So... I have another nine days until I find out the test results. What can I do in the meantime to stay sane? I'd like to do something other than just filling the hours with TV or movies or other distractions. Is there a form of meditation I could practice? Philosophy books about dealing with this sort of thing?
I had blood drawn a few days ago and I'm now stuck in limbo waiting for test results to come back. They're checking for HIV, hep C, and a few other common causes. I've had these exact tests done before and they came back negative but my doctor believes there must be a false negative in there so we're doing the tests again. I won't get my results for another two weeks, leaving me ample time to construct detailed worst-case scenarios where I'm dying in a hospital bed, alone, for the rest of my life. Fantastic way to spend the holidays, right?
I have been living in a heightened state of anxiety for the past few days, and on-and-off for the past year, due to health issues. I am already an anxiety-prone person, but this is different. I actually passed out when the doctors told me they wanted to run the tests again.
I am also dealing with some physical pain and limited mobility from a surgery a few days ago. I don't have much motivation to do anything. I can't exercise, which is my usual means of coping with stress. The pain is non-obvious, so I just haven't told anyone.
I just... cannot relax. I don't feel depressed. I've been depressed before, but this is different. My problem isn't that I'm overwhelmed with emotion.. I just have no way of interfacing with my emotions right now. It's like... I'm not really here. I'm floating somewhere overhead, watching this movie playing out, waiting to see what happens. I feel nothing. Just a dull, distant anger.
I'm sick of feeling alone and broken and helpless and weak. I have no one to talk to. I have no close friends or a partner to confide in. There is only person in my life who knows what's going on, but they are not well-equipped to help me. The only advice I've gotten is generic "be positive" type stuff. I hate this advice. This person means well but cannot appreciate how scared I am. How can you be positive when you're waiting to find out if you have HIV? There's nothing positive about it.
So... I have another nine days until I find out the test results. What can I do in the meantime to stay sane? I'd like to do something other than just filling the hours with TV or movies or other distractions. Is there a form of meditation I could practice? Philosophy books about dealing with this sort of thing?
There are walk-in clinics near me that do HIV tests onsite with immediate results. I think some are free.
You should find one of these type places near you and at least rule out HIV.
You had surgery, but there was no pain meds for your recovery? Contact your doctor if your pain meds are not working and get something else.
posted by jbenben at 3:50 PM on December 22, 2014 [1 favorite]
You should find one of these type places near you and at least rule out HIV.
You had surgery, but there was no pain meds for your recovery? Contact your doctor if your pain meds are not working and get something else.
posted by jbenben at 3:50 PM on December 22, 2014 [1 favorite]
Pain meds and surgery and general anesthesia can create anxiety for a whole host of reasons, most of them physiological. Ask your doctor for anti-anxiety meds for the short term. If you get a diagnosis that is upsetting, that's a good time to deal with your fear of the future on a deeper level, but given the current state of affairs, beginning a meditation practice would be like going to the gym for the first time and trying to lift a 100 pound weight.
There are lots of people with chronic illnesses who feel exactly the way you do about the "be positive" messages and I'm pretty sure there are posts on the blue here about how awful it is, so you're not alone in that.
Given your current situation, if you can manage it somehow, I would strongly encourage you to find a therapist, and see if you can schedule 2 or 3 visits a week until your results come in.
But yeah, don't discount the physiological residue from all the crap that's been going through your body recently. In a different time frame, I'd be all, oh do a cleanse and go on a meditation retreat and blah blah, but I think you would do well to treat the symptoms for the moment. Also, do drink plenty of water.
posted by janey47 at 4:03 PM on December 22, 2014 [3 favorites]
There are lots of people with chronic illnesses who feel exactly the way you do about the "be positive" messages and I'm pretty sure there are posts on the blue here about how awful it is, so you're not alone in that.
Given your current situation, if you can manage it somehow, I would strongly encourage you to find a therapist, and see if you can schedule 2 or 3 visits a week until your results come in.
But yeah, don't discount the physiological residue from all the crap that's been going through your body recently. In a different time frame, I'd be all, oh do a cleanse and go on a meditation retreat and blah blah, but I think you would do well to treat the symptoms for the moment. Also, do drink plenty of water.
posted by janey47 at 4:03 PM on December 22, 2014 [3 favorites]
It's frustrating to try and track down immune stuff, it sounds like your doctor has tested for two things and he's all out of ideas. After the new year, you might want to track down a specialist.
If you want to sleep well, do the clinic HIV test. If it was negative the last time, it's probably negative this time too.
As for Hep C, it's curable now. My friend had it for 25 years, and did a 12 week course of meds and as of last week, she's cured. Done. All better. Its a fucking miracle.
Do look into anti anxiety drugs until you get your test results. And support groups and all of that shit. The holidays are hard enough, you don't have to white knuckle this too.
Hang in there.
posted by Ruthless Bunny at 4:09 PM on December 22, 2014 [3 favorites]
If you want to sleep well, do the clinic HIV test. If it was negative the last time, it's probably negative this time too.
As for Hep C, it's curable now. My friend had it for 25 years, and did a 12 week course of meds and as of last week, she's cured. Done. All better. Its a fucking miracle.
Do look into anti anxiety drugs until you get your test results. And support groups and all of that shit. The holidays are hard enough, you don't have to white knuckle this too.
Hang in there.
posted by Ruthless Bunny at 4:09 PM on December 22, 2014 [3 favorites]
You might find it helpful to read about the DBT techniques of distress tolerance & radical acceptance. I'm sure there's a lot of information online to read through that might be helpful, but I'm not sure of the best online sources - I've just linked to ones that came up in a quick search.
posted by insectosaurus at 4:19 PM on December 22, 2014
posted by insectosaurus at 4:19 PM on December 22, 2014
I've experienced this kind of horrible pain before, where the intensity of the emotion and the thought of the outcome literally incapacitates you. I was never able to bear other people around me when it happened.
I played as many mindless video games as I owned, switching when the pressure of helplessness built up too much. I watched angry video game review videos. I did anything that would not require me to think or remind me of what I was going through but would occupy me physically so I wasn't sitting still while my world collapsed.
Good luck.
posted by Nyx at 4:41 PM on December 22, 2014
I played as many mindless video games as I owned, switching when the pressure of helplessness built up too much. I watched angry video game review videos. I did anything that would not require me to think or remind me of what I was going through but would occupy me physically so I wasn't sitting still while my world collapsed.
Good luck.
posted by Nyx at 4:41 PM on December 22, 2014
It sounds like you are disassociating. If you google that term there are some grounding techniques available.
From the philosophical angle: I would say the scary thing is that you are facing a change of identity, from a person who is disease free to one who may have a disease. This triggers the ego to freak the fuck out, because it is not used to and does not want to start thinking of itself as having a disease.
The key to reducing this kind of suffering is mental flexibility which I appreciate can be extremely difficult to cultivate in this situation. But when you feel an attack coming on, say to yourself: I am afraid because I do not want to conceive of myself in this new way, I do not want my identity to change. My fear and anger come from me holding on to my identity.
This will not change the outcome but it should hopefully get yourself to the point where you can feel your sincere feelings rather than disassociate from them.
I am sorry this is happening.
posted by St. Peepsburg at 4:52 PM on December 22, 2014
From the philosophical angle: I would say the scary thing is that you are facing a change of identity, from a person who is disease free to one who may have a disease. This triggers the ego to freak the fuck out, because it is not used to and does not want to start thinking of itself as having a disease.
The key to reducing this kind of suffering is mental flexibility which I appreciate can be extremely difficult to cultivate in this situation. But when you feel an attack coming on, say to yourself: I am afraid because I do not want to conceive of myself in this new way, I do not want my identity to change. My fear and anger come from me holding on to my identity.
This will not change the outcome but it should hopefully get yourself to the point where you can feel your sincere feelings rather than disassociate from them.
I am sorry this is happening.
posted by St. Peepsburg at 4:52 PM on December 22, 2014
Gah! I have little respect for doctors who ignore the fact that (surprise!) patients get anxious while waiting days and weeks for important, scary, life-changing test results.
I'd advise that you call your doctor - more likely, his nurse, because you can never just call up a doctor on the phone - and tell them you are suffering from severe anxiety while awaiting your test results. Make sure you mention that you're non-functional. Ask if they can call in a Rx for an N day supply of some kind of benzo to your nearby pharmacist. Insist that they call you back. If you don't hear back in an hour, call them again. Repeat as necessary.
I have, alas, been in your shoes and did exactly what I describe above.
Hang in there.
posted by doctor tough love at 4:54 PM on December 22, 2014 [3 favorites]
I'd advise that you call your doctor - more likely, his nurse, because you can never just call up a doctor on the phone - and tell them you are suffering from severe anxiety while awaiting your test results. Make sure you mention that you're non-functional. Ask if they can call in a Rx for an N day supply of some kind of benzo to your nearby pharmacist. Insist that they call you back. If you don't hear back in an hour, call them again. Repeat as necessary.
I have, alas, been in your shoes and did exactly what I describe above.
Hang in there.
posted by doctor tough love at 4:54 PM on December 22, 2014 [3 favorites]
I'm surprised that you got the blood drawn a few days ago and you won't get the test results for 2 weeks yet. These tests take a few hours, maybe a day to run at the most. Rather than start on anti-anxiety meds (most of which are addictive and hard to wean off), I'd suggest calling your doctor's office and asking if you can get in to discuss your test results. My guess is that the results are already back, but you just have to have an in-person appointment to discuss them - typically you cannot get HIV test results over the phone. Call the office! There are usually a lot of openings/cancellations around the holidays. They will probably be very understanding about you being anxious in this situation. And bring a support person when you go, if you can...
As for the tests themselves - neither one is likely to be positive. Both types of tests have a very low false negative rate (ranging from less than 10% to less than 0.1%). If the tests are positive, neither one condemns you to dying in a hospital bed alone for the rest of your life - both actually have medical treatments that would likely manage the disease (if not cure it) until you lived out the rest of your natural life and died of something else (this is more true right now for hep C than HIV, but considering that current HIV treatment can give you a few decades, there are a lot more medical advances that would probably happen during that time). I don't mean to blow off your fears, no one wants to have HIV or hep C and most of us would be understandably upset at the prospect of it, but I just want to be clear that your thoughts about what that would mean for your future, in the unlikely event that it did occur, do not reflect the reality of living with hep C or HIV these days.
Meditation is certainly not a bad idea, but I would do it in a class situation (or do gentle yoga, perhaps) - if you're just sitting along with your thoughts and you're already fixated on something, it's going to be tough to get that out of your mind.
posted by treehorn+bunny at 5:17 PM on December 22, 2014 [7 favorites]
As for the tests themselves - neither one is likely to be positive. Both types of tests have a very low false negative rate (ranging from less than 10% to less than 0.1%). If the tests are positive, neither one condemns you to dying in a hospital bed alone for the rest of your life - both actually have medical treatments that would likely manage the disease (if not cure it) until you lived out the rest of your natural life and died of something else (this is more true right now for hep C than HIV, but considering that current HIV treatment can give you a few decades, there are a lot more medical advances that would probably happen during that time). I don't mean to blow off your fears, no one wants to have HIV or hep C and most of us would be understandably upset at the prospect of it, but I just want to be clear that your thoughts about what that would mean for your future, in the unlikely event that it did occur, do not reflect the reality of living with hep C or HIV these days.
Meditation is certainly not a bad idea, but I would do it in a class situation (or do gentle yoga, perhaps) - if you're just sitting along with your thoughts and you're already fixated on something, it's going to be tough to get that out of your mind.
posted by treehorn+bunny at 5:17 PM on December 22, 2014 [7 favorites]
Also keep in mind, OP, how much your pain is influencing your own headspace at this moment. I have a chronic autoimmune disorder - colitis - and before it was diagnosed and treated and I was quite unwell, the chronic pain and fatigue had a very noticeable impact on my general mood and wellbeing. I didn't even notice it at times - not least of which because I had chronic pain and fatigue _all the time_ but once it was treated the difference was incredible.
I also think there are a lot of negative emotions and frustrations around lack of diagnosis as well for most people.
Hang in there, OP. Remember:
1. The pain is making you feel this way
2. You will get diagnosed
3. You will get treated.
4. You will not feel like this forever; it will get better I promise. Chronic illness is a spectrum, and you are at the bottom of a deep trough right now, but no one stays there.
posted by smoke at 5:32 PM on December 22, 2014 [4 favorites]
I also think there are a lot of negative emotions and frustrations around lack of diagnosis as well for most people.
Hang in there, OP. Remember:
1. The pain is making you feel this way
2. You will get diagnosed
3. You will get treated.
4. You will not feel like this forever; it will get better I promise. Chronic illness is a spectrum, and you are at the bottom of a deep trough right now, but no one stays there.
posted by smoke at 5:32 PM on December 22, 2014 [4 favorites]
I'm really sorry that you're going through this. Not only are you dealing with chronic illness, but also recovery from surgery. Now, let's add a long wait for test results (I got tested for HIV and Hep C a couple of months ago and only had to wait three days for the results) and it's no surprise that you're anxious.
Unless you had a potential exposure in the weeks before your last tests, I think that it is very likely those negative results were accurate.
I n-th ringing your doctors clinic to see if there's any way that you can get the results earlier. It's possible that some of those additional tests are the reason for the long wait, but it's worth a shot anyway. Maybe you can get the HIV and Hep results out of the way sooner, at least.
The thing you have to try to remember that no amount of worrying will change your results. So, please try to be kind to yourself in the meantime. Engage in activities that make you happy and will distract you in the meantime. Meditate. Try to let all the worrying thoughts float out of your head as soon as they appear. Try not to feed the anxiety.
posted by kinddieserzeit at 6:07 PM on December 22, 2014
Unless you had a potential exposure in the weeks before your last tests, I think that it is very likely those negative results were accurate.
I n-th ringing your doctors clinic to see if there's any way that you can get the results earlier. It's possible that some of those additional tests are the reason for the long wait, but it's worth a shot anyway. Maybe you can get the HIV and Hep results out of the way sooner, at least.
The thing you have to try to remember that no amount of worrying will change your results. So, please try to be kind to yourself in the meantime. Engage in activities that make you happy and will distract you in the meantime. Meditate. Try to let all the worrying thoughts float out of your head as soon as they appear. Try not to feed the anxiety.
posted by kinddieserzeit at 6:07 PM on December 22, 2014
Sorry, I glossed over the end of your question and I should have been more specific: When I was suffering from anxiety my therapist recommended mindfulness to me. One way of practising it (if you don't have any hearing impairment) is to sit somewhere, close your eyes and try to listen to all the sounds around you. What can you hear close to you? What can you hear further away?
posted by kinddieserzeit at 6:14 PM on December 22, 2014 [1 favorite]
posted by kinddieserzeit at 6:14 PM on December 22, 2014 [1 favorite]
I really, really recommend progressive muscle relaxation; it's a form of guided relaxation/CBT which uses an audio track to walk you through tensing groups of muscles, then relaxing them. A lot of them sound pretty new age/corny, but the science behind it is sound.
I particularly like the tracks Progressive Muscle Relaxation and Relaxation into Sleep from Guided Relaxation for Teens by Edna Reinhardt. It's available on iTunes. There are also a lot of tracks on YouTube/etc, though you might have to sift quite a bit of wheat from the chaff.
It puts me to sleep, every time, and has saved me from really serious mental distress a million times over. It's a secret "stop/pause" button on life.
posted by Juliet Banana at 7:49 PM on December 22, 2014 [3 favorites]
I particularly like the tracks Progressive Muscle Relaxation and Relaxation into Sleep from Guided Relaxation for Teens by Edna Reinhardt. It's available on iTunes. There are also a lot of tracks on YouTube/etc, though you might have to sift quite a bit of wheat from the chaff.
It puts me to sleep, every time, and has saved me from really serious mental distress a million times over. It's a secret "stop/pause" button on life.
posted by Juliet Banana at 7:49 PM on December 22, 2014 [3 favorites]
Here's what I'd do. I'd live these interim days truly expecting the worst....in the best possible way.
I'd settle affairs, connect with long lost friends and family, forgive (even if just in your own mind) as much as you possibly can, and steep in the small pleasures of each passing prosaic moment.
Leave off the freaking out part. Just go right to moment-relishing, and the heightened sensibilities that come from a sudden realization of finality (just as you might suddenly focus on tasks upon being handed a deadline).
Then, regardless of the eventual results, maintain this heightened sensibility and moment-relishing and gratitude (perhaps even zealous creative output). Stay in that groove for whatever time you've got left, be it decades or less than that.
Also see this
posted by Quisp Lover at 8:33 PM on December 22, 2014
I'd settle affairs, connect with long lost friends and family, forgive (even if just in your own mind) as much as you possibly can, and steep in the small pleasures of each passing prosaic moment.
Leave off the freaking out part. Just go right to moment-relishing, and the heightened sensibilities that come from a sudden realization of finality (just as you might suddenly focus on tasks upon being handed a deadline).
Then, regardless of the eventual results, maintain this heightened sensibility and moment-relishing and gratitude (perhaps even zealous creative output). Stay in that groove for whatever time you've got left, be it decades or less than that.
Also see this
posted by Quisp Lover at 8:33 PM on December 22, 2014
I'm sorry you're going through this. I just went through a week long wait for a biopsy after a lumpectomy (benign, hooray). I also had a health issue many years ago where I had similar waits for tests repeatedly. This time, like you I couldn't exercise after the surgery, which took away a major coping mechanism.
The first thing I want to say is that it is totally ok to feel like this. It's a normal reaction and you will get through it. Second, I agree with those who say ask for anxiety meds, and that starting to meditate right now might be difficult, and that finding a therapist is worth doing.
Another suggestion is to reexamine your network of friends and coworkers to see if there might actually be some support out there. You may have people in your life who you don't realize can be helpful. I actually deepend my relationship with a couple of casual friends in this last crisis.
Finally, this can cut both ways, but you might be able to find an online community for the diagnoses you fear who can help you see that there is support, people cope, and you can live with whatever it is. Of course it can fuel anxiety for some to go to sites like that and see details, but for me it helps me see the worst case scenario as something I can get through.
Good luck to you.
posted by runuclevergirl at 5:10 PM on December 23, 2014
The first thing I want to say is that it is totally ok to feel like this. It's a normal reaction and you will get through it. Second, I agree with those who say ask for anxiety meds, and that starting to meditate right now might be difficult, and that finding a therapist is worth doing.
Another suggestion is to reexamine your network of friends and coworkers to see if there might actually be some support out there. You may have people in your life who you don't realize can be helpful. I actually deepend my relationship with a couple of casual friends in this last crisis.
Finally, this can cut both ways, but you might be able to find an online community for the diagnoses you fear who can help you see that there is support, people cope, and you can live with whatever it is. Of course it can fuel anxiety for some to go to sites like that and see details, but for me it helps me see the worst case scenario as something I can get through.
Good luck to you.
posted by runuclevergirl at 5:10 PM on December 23, 2014
I deal with a long list of chronic health problems, both physical and psychological. I have a business mentor who also deals with a long list of chronic health problems. Her advice to me, many years ago, was this: you can do anything for 15 minutes. I've applied this in all areas of my life. It doesn't always work, but most of the time it does.
I set a kitchen timer for the 15 minutes. Then I tell myself, out loud, "Ok, we've gotta insert whatever you have to do. But we only have to do it for 15 minutes. Let's go, no fear, no doubt, all in, balls out." Then I turn on the timer and do my foo for 15 minutes. When the timer goes off, I stop and evaluate how much I've accomplished, how much more there is to do, how I'm doing physically, and how I'm doing psychologically. If I'm having a rougher day, I give myself permission to be all done after the 15 minutes is up. If I'm having a better day, I may set the timer for another 15 minutes, repeat my mantra out loud, and get back to it. Or I'll go work on something else that needs doing for 15 minutes.
As for waiting for diagnoses: It took eight years for me to be diagnosed with fibromyalgia. Eight long years of ER visits where I could barely walk, barely move my arms, and I kept getting told "We can't find anything wrong with you, here's some Vicodin, go home." Eight. Fucking. Years. I've been seeing psychiatrists, psychologists, and therapists for 25 years. Given how I'm reacting to the drugs I'm currently taking, I'm going to go with about 24.5 years of trying to work with the wrong freaking diagnoses. And in the last year alone, I've had three new major health problems crop up. The first one took about a week of daily ER visits to get diagnosed, but despite all kinds of MRIs, X-rays, and CT scans, no cause can be found. The second took about a month to figure out, after 4 days hospitalized for stroke-like symptoms, but despite the diagnosis, no cause there either. The third is an "OMG FINALLY!!!!!" because it's the base cause of a health problem I've had for nearly 14 years. Fourteen years I've been dealing with the symptoms of this health problem, thinking that the symptoms WERE the health problem. But no, the real health problem was diagnosed after an upper endoscopy, after 4 days in the hospital eating nothing but broth and jello.
All that is to tell you this: you're not alone. You can get through it. It's gonna suck, I won't lie to you. But you can get through it. All the "think happy thoughts" platitudes in the world won't help sometimes. There are two things that help me get through the bad times. The first is: this, too, shall pass. My daddy taught me that one, when I was in high school and miserable. There are still days when I'll call him up and say, "Ok, I need you to tell me." And he does. Sooner or later, one way or another, this, too, shall pass.
The second way is a combination of something I read in a Chicken Soup for the Soul book and a mantra a therapist gave me. The mantra is : I am in control of my thoughts. The Chicken Soup story was about a guy who, despite a bunch of crappy things happening to him, chose to be happy. So the other night, lying in an ER bed, with a pain level of just freaking shoot me already, I was cracking jokes with the doctor. And he asked me about it. I told him, "I look at it this way. I can be lying here in all kinds of pain and be miserable, or I can be lying here in all kinds of pain and be happy. Either way, I'm still lying here in all kinds of pain. So I choose to be happy." Granted, it doesn't always work. I was in the ER tonight, and ready to take somebody's head off. But I still managed to apologize to the nurse I cussed out while she spent 5 minutes digging around trying to get a needle in one of my veins. Apologized both for the cussing, and for having lousy veins. And when she was able to get me a second dose of meds before I was discharged, we were joking together.
Feel free to memail me if you need a shoulder to cry on, or to vent, or whatever. Best of luck to you.
posted by The Almighty Mommy Goddess at 12:57 AM on December 24, 2014 [1 favorite]
I set a kitchen timer for the 15 minutes. Then I tell myself, out loud, "Ok, we've gotta insert whatever you have to do. But we only have to do it for 15 minutes. Let's go, no fear, no doubt, all in, balls out." Then I turn on the timer and do my foo for 15 minutes. When the timer goes off, I stop and evaluate how much I've accomplished, how much more there is to do, how I'm doing physically, and how I'm doing psychologically. If I'm having a rougher day, I give myself permission to be all done after the 15 minutes is up. If I'm having a better day, I may set the timer for another 15 minutes, repeat my mantra out loud, and get back to it. Or I'll go work on something else that needs doing for 15 minutes.
As for waiting for diagnoses: It took eight years for me to be diagnosed with fibromyalgia. Eight long years of ER visits where I could barely walk, barely move my arms, and I kept getting told "We can't find anything wrong with you, here's some Vicodin, go home." Eight. Fucking. Years. I've been seeing psychiatrists, psychologists, and therapists for 25 years. Given how I'm reacting to the drugs I'm currently taking, I'm going to go with about 24.5 years of trying to work with the wrong freaking diagnoses. And in the last year alone, I've had three new major health problems crop up. The first one took about a week of daily ER visits to get diagnosed, but despite all kinds of MRIs, X-rays, and CT scans, no cause can be found. The second took about a month to figure out, after 4 days hospitalized for stroke-like symptoms, but despite the diagnosis, no cause there either. The third is an "OMG FINALLY!!!!!" because it's the base cause of a health problem I've had for nearly 14 years. Fourteen years I've been dealing with the symptoms of this health problem, thinking that the symptoms WERE the health problem. But no, the real health problem was diagnosed after an upper endoscopy, after 4 days in the hospital eating nothing but broth and jello.
All that is to tell you this: you're not alone. You can get through it. It's gonna suck, I won't lie to you. But you can get through it. All the "think happy thoughts" platitudes in the world won't help sometimes. There are two things that help me get through the bad times. The first is: this, too, shall pass. My daddy taught me that one, when I was in high school and miserable. There are still days when I'll call him up and say, "Ok, I need you to tell me." And he does. Sooner or later, one way or another, this, too, shall pass.
The second way is a combination of something I read in a Chicken Soup for the Soul book and a mantra a therapist gave me. The mantra is : I am in control of my thoughts. The Chicken Soup story was about a guy who, despite a bunch of crappy things happening to him, chose to be happy. So the other night, lying in an ER bed, with a pain level of just freaking shoot me already, I was cracking jokes with the doctor. And he asked me about it. I told him, "I look at it this way. I can be lying here in all kinds of pain and be miserable, or I can be lying here in all kinds of pain and be happy. Either way, I'm still lying here in all kinds of pain. So I choose to be happy." Granted, it doesn't always work. I was in the ER tonight, and ready to take somebody's head off. But I still managed to apologize to the nurse I cussed out while she spent 5 minutes digging around trying to get a needle in one of my veins. Apologized both for the cussing, and for having lousy veins. And when she was able to get me a second dose of meds before I was discharged, we were joking together.
Feel free to memail me if you need a shoulder to cry on, or to vent, or whatever. Best of luck to you.
posted by The Almighty Mommy Goddess at 12:57 AM on December 24, 2014 [1 favorite]
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An HIV diagnosis is difficult, but it is not a life-ending disease like it was 20 years ago. It is a manageable disease, and if that's what is causing your health issues right now, then getting on medication will help you immeasurably.
I know it's probably no comfort to hear (I know very personally, actually), but it's not the end of the line. Please feel free to memail me for a more personal take on it, if you'd like.
posted by xingcat at 3:50 PM on December 22, 2014 [1 favorite]