How to address a severe phobia in order to receive medical treatment?
August 5, 2023 3:40 PM Subscribe
I have a phobia of sedation of any kind due to two traumatic experiences I have had in medical settings. A head and neck surgeon informs me that I must have surgery to remove cancerous tumors from my throat. I am pretty sure I won't be able to do this as it stands right now--that I will cancel at the last moment and never reschedule. (TW: SA, ED)
This phobia is extreme. All of my tooth extractions were done with Novocaine only, to the point where I would shop around for people willing to remove wisdom teeth without sedation. I refused to have a resuscitation device implanted in my heart after a congenital heart defect was discovered after a nearly fatal rhythm incident because it would require sedation. I have cancelled 7 colonoscopies and 3 endoscopies and finally gave up on the idea of doing them entirely. I had a vacuum aspiration abortion while on a single valium. And the one time I *did* go under the knife and have general anesthesia, the anesthesiologist stood over my bed and made fun of my weight and physical appearance while he was administering a sedative to calm me down for surgery--the exact scenario that causes my panic, this idea that I am being mistreated by a fucking sociopath while incapable of responding, escaping, or moving. (Apparently weighing 140 lbs while dealing with thyroid cancer is hilarious and worthy of public derision.)
The inciting incident for all of his occurred when I was 13 or 14. I was anorexic and weighed roughly 90 lbs. My parents sent me to an ED clinic at the hospital that was designed to keep young patients from needing an NG feeding tube. Because I was amenorrheic they sent me for a pelvic exam to verify that the primary cause was being underweight and not any other issue. Somehow I ended up in a room alone with a male resident who gave me a pill "to relax me" so he could perform the exam. During the exam he removed his gloves to probe my vagina. I was frozen in fear and out of it--this wasn't the first time I'd been sexually assaulted (I was molested by a next door neighbor for several years) but it was the first time it had happened in a medical setting while drugged.
This incident destroyed any trust I have in doctors and I must say nothing has happened since to improve my relationship with medical professionals. I could write a book about all the bullshit I've been subjected to over the years, including just a couple days ago when I was in so much pain I went to the ER on the advice of the nurse line and the ER doctor told me it was "psychological" and sent me home with nothing after doing nothing. I've been in agony ever since--I finally caved and started taking pills I was prescribed for a dental procedure just to have a few hours a day where I can think about something other than this horrendous pain. I only have 10 left. I have no idea what I will do when they are gone.
My surgeon is kind of an asshole. He was angry with me that I went to the ER and annoyed that I read my chart on the patient portal. He was incredulous that I didn't fully complete my first course of thyroid cancer treatment because I couldn't afford to take the pregnancy tests mandated by nuclear medicine that my insurance wouldn't cover because I cannot get pregnant. I clearly can't explain all this phobia stuff to him.
I don't know how to fix this. I have dealt with other phobias in CBT with exposure therapy, but I can't expose myself to sedation in medical settings administered by unfeeling sociopaths like I can expose myself to driving in the rain. All of the advice I read about this talks about how irrational it is to be afraid of sedation because you usually wake up, etc. etc. I don't care about waking up. I care about being insensate while surrounded by cruel strangers. My fear is rational, because terrible things have actually happened to me, and I know from my father's work representing doctors in labor disputes that they happen to a lot of people. And unfortunately I have to deal with all of this alone--no partner, no friends, no family able or willing to help, except one aunt who takes me to some of my medical appointments who told me that I clearly have PTSD but I need to toughen up and just get through it.
I tried calling the psych practice I used to see for bipolar a couple of times but they never called me back.
My surgeon told me to make an appointment for a week or so from now to discuss the surgery and I don't think he will be pleased if I waste his time with this stuff. I just don't know how to proceed.
This phobia is extreme. All of my tooth extractions were done with Novocaine only, to the point where I would shop around for people willing to remove wisdom teeth without sedation. I refused to have a resuscitation device implanted in my heart after a congenital heart defect was discovered after a nearly fatal rhythm incident because it would require sedation. I have cancelled 7 colonoscopies and 3 endoscopies and finally gave up on the idea of doing them entirely. I had a vacuum aspiration abortion while on a single valium. And the one time I *did* go under the knife and have general anesthesia, the anesthesiologist stood over my bed and made fun of my weight and physical appearance while he was administering a sedative to calm me down for surgery--the exact scenario that causes my panic, this idea that I am being mistreated by a fucking sociopath while incapable of responding, escaping, or moving. (Apparently weighing 140 lbs while dealing with thyroid cancer is hilarious and worthy of public derision.)
The inciting incident for all of his occurred when I was 13 or 14. I was anorexic and weighed roughly 90 lbs. My parents sent me to an ED clinic at the hospital that was designed to keep young patients from needing an NG feeding tube. Because I was amenorrheic they sent me for a pelvic exam to verify that the primary cause was being underweight and not any other issue. Somehow I ended up in a room alone with a male resident who gave me a pill "to relax me" so he could perform the exam. During the exam he removed his gloves to probe my vagina. I was frozen in fear and out of it--this wasn't the first time I'd been sexually assaulted (I was molested by a next door neighbor for several years) but it was the first time it had happened in a medical setting while drugged.
This incident destroyed any trust I have in doctors and I must say nothing has happened since to improve my relationship with medical professionals. I could write a book about all the bullshit I've been subjected to over the years, including just a couple days ago when I was in so much pain I went to the ER on the advice of the nurse line and the ER doctor told me it was "psychological" and sent me home with nothing after doing nothing. I've been in agony ever since--I finally caved and started taking pills I was prescribed for a dental procedure just to have a few hours a day where I can think about something other than this horrendous pain. I only have 10 left. I have no idea what I will do when they are gone.
My surgeon is kind of an asshole. He was angry with me that I went to the ER and annoyed that I read my chart on the patient portal. He was incredulous that I didn't fully complete my first course of thyroid cancer treatment because I couldn't afford to take the pregnancy tests mandated by nuclear medicine that my insurance wouldn't cover because I cannot get pregnant. I clearly can't explain all this phobia stuff to him.
I don't know how to fix this. I have dealt with other phobias in CBT with exposure therapy, but I can't expose myself to sedation in medical settings administered by unfeeling sociopaths like I can expose myself to driving in the rain. All of the advice I read about this talks about how irrational it is to be afraid of sedation because you usually wake up, etc. etc. I don't care about waking up. I care about being insensate while surrounded by cruel strangers. My fear is rational, because terrible things have actually happened to me, and I know from my father's work representing doctors in labor disputes that they happen to a lot of people. And unfortunately I have to deal with all of this alone--no partner, no friends, no family able or willing to help, except one aunt who takes me to some of my medical appointments who told me that I clearly have PTSD but I need to toughen up and just get through it.
I tried calling the psych practice I used to see for bipolar a couple of times but they never called me back.
My surgeon told me to make an appointment for a week or so from now to discuss the surgery and I don't think he will be pleased if I waste his time with this stuff. I just don't know how to proceed.
Definitely find a doctor you trust, maybe a woman who’s been socialized to be more empathetic. The vibe from the current surgeon seems bad. Also, maybe there’s some sort of patient companion service local to you. I don’t know, but I bet there’s some way to pay someone to take you and even sit with you. For me having an advocate there would make me feel much less nervous.
posted by caviar2d2 at 4:04 PM on August 5, 2023 [10 favorites]
posted by caviar2d2 at 4:04 PM on August 5, 2023 [10 favorites]
Could you hire a Doula? They are trained to advocate for patients in medical environments and on might be willing to assist you.
posted by Ausamor at 4:26 PM on August 5, 2023 [19 favorites]
posted by Ausamor at 4:26 PM on August 5, 2023 [19 favorites]
I had what was diagnosed in the late 70s as a "phobia of needles" that I have since, as an adult, been told is probably medical PTSD. I had to have it treated with hypnotherapy as a condition of hospital admission before I could have "elective" surgery to remove a bone chip from a joint.
I received treatment then and while it's no fun, I can receive injections and have blood draws done with only moderate discomfort 40 years on. If you can get hypnotherapy, I think it might help you.
If you can't get a referral from your surgeon, get one from another doctor ASAP. Best of luck in getting the treatment you need.
posted by gentlyepigrams at 4:33 PM on August 5, 2023 [3 favorites]
I received treatment then and while it's no fun, I can receive injections and have blood draws done with only moderate discomfort 40 years on. If you can get hypnotherapy, I think it might help you.
If you can't get a referral from your surgeon, get one from another doctor ASAP. Best of luck in getting the treatment you need.
posted by gentlyepigrams at 4:33 PM on August 5, 2023 [3 favorites]
Are you with a cancer center? I ask because you may be able to get some additional support from social services that way, in that you have severe phobia due to trauma but you want to be able to complete treatment and need help to be able to do so.
If you are not recieving care at a cancer center, If at all possible go get a second opinion at a cancer center.
You should also have a contact for someone at the center whose job is to deal with financial concerns such as the pregnancy tests.
If you are at a center, go ahead and call the main number and ask to speak to your social worker or social services and speak to them about this as soon as possible. If nothing else they may be able to get you in with a behavioral health sooner than later.
Take gentle care and I hope that you are able to move forward with the treatments you want to persue.
posted by AlexiaSky at 4:57 PM on August 5, 2023 [15 favorites]
If you are not recieving care at a cancer center, If at all possible go get a second opinion at a cancer center.
You should also have a contact for someone at the center whose job is to deal with financial concerns such as the pregnancy tests.
If you are at a center, go ahead and call the main number and ask to speak to your social worker or social services and speak to them about this as soon as possible. If nothing else they may be able to get you in with a behavioral health sooner than later.
Take gentle care and I hope that you are able to move forward with the treatments you want to persue.
posted by AlexiaSky at 4:57 PM on August 5, 2023 [15 favorites]
I wonder if you can find someone at the hospital who helps advocate for patients (a social worker? An ombud) and see if you can arrange to either a) have a person you trslust with you at all times while you are sedated and or b) videotape the entire time you are sedated. Presumably either option would keep everyone present on their best behavior.
I'm sure it's highly unusual to have someone non-medical.present at a surgury, but maybe if they have a viewing area? Of course this requires that you have someone you trust who can do that. A doula might not be a bad option.
posted by If only I had a penguin... at 5:00 PM on August 5, 2023 [5 favorites]
I'm sure it's highly unusual to have someone non-medical.present at a surgury, but maybe if they have a viewing area? Of course this requires that you have someone you trust who can do that. A doula might not be a bad option.
posted by If only I had a penguin... at 5:00 PM on August 5, 2023 [5 favorites]
Is it an option to bring an observer (friend)? I did this for a friend requiring tooth extraction who had a similar although milder phobia, or rather, understandable fear of medical abuse…in her mind, me just being there would prevent inappropriate conduct and it set her at ease. She was sedated and I didn’t leave her side and it was fine. As proposed above, if laypersons cannot be present for some reason, maybe you could bring a doula?
posted by The Toad at 5:02 PM on August 5, 2023 [10 favorites]
posted by The Toad at 5:02 PM on August 5, 2023 [10 favorites]
I’ve been in the operating room for an adult who was terrified to keep them calm by arrangement - it wasn’t standard protocol but I argued and they just had me suit up and made sure I stayed in a designated area in the room. I know parents who’ve done the same for kids in surgery too.
I would not call this a phobia - I would call it PTSD and be blunt and email your surgeon and cc the board at the hospital, patient advocates etc. Write out that you are extremely keen to have the surgery, recognise that he is an excellent surgeon and you have no concerns currently about the quality of his care. However, due to PTSD from prior traumatic experiences as a vulnerable person under medical care, you need the reasonable accommodation of having a person, name etc, present during and after surgery. They will of course follow medical guidelines of an observer during surgery. You deeply appreciate the hospital’s assistance in this blah blah - check their patient charter or mission statement or whatever to find anything you can point to.
This is not unreasonable as a request and also not uncommon. It’s inconvenient to the hospital so they won’t routinely offer it but it can be done.
posted by dorothyisunderwood at 6:01 PM on August 5, 2023 [47 favorites]
I would not call this a phobia - I would call it PTSD and be blunt and email your surgeon and cc the board at the hospital, patient advocates etc. Write out that you are extremely keen to have the surgery, recognise that he is an excellent surgeon and you have no concerns currently about the quality of his care. However, due to PTSD from prior traumatic experiences as a vulnerable person under medical care, you need the reasonable accommodation of having a person, name etc, present during and after surgery. They will of course follow medical guidelines of an observer during surgery. You deeply appreciate the hospital’s assistance in this blah blah - check their patient charter or mission statement or whatever to find anything you can point to.
This is not unreasonable as a request and also not uncommon. It’s inconvenient to the hospital so they won’t routinely offer it but it can be done.
posted by dorothyisunderwood at 6:01 PM on August 5, 2023 [47 favorites]
I also thought of a doula. And agree that a social worker might be a hospital liaison. Do you have a trusted person who can go with you to the surgeon appointment coming up? Not to speak for you, just to be present and calm and on your side.
I hope you find a way through this difficult situation, and that you learn that different outcomes are possible with better care.
posted by Lawn Beaver at 6:08 PM on August 5, 2023
I hope you find a way through this difficult situation, and that you learn that different outcomes are possible with better care.
posted by Lawn Beaver at 6:08 PM on August 5, 2023
Get a second opinion, if you can. You don’t trust this doctor. Why would you take his word that you need surgery? There might be other options.
Agree that this is PTSD, not a phobia, and treating medical PTSD while being forced to confront your triggers is a tough task.
posted by shock muppet at 7:00 PM on August 5, 2023 [8 favorites]
Agree that this is PTSD, not a phobia, and treating medical PTSD while being forced to confront your triggers is a tough task.
posted by shock muppet at 7:00 PM on August 5, 2023 [8 favorites]
I hope that the hospital's social work or other can help you out here, or a dollar (my phone is relentlessly autocorrectin d o u la). Another option might be hiring someone with credentials that will be recognized by the hospital. I've seen such people advertising on care.com - a certified nursing assistant for example - and it might be worth it for you to develop a relationship with someone along those lines, for future care help.
posted by Dashy at 8:10 PM on August 5, 2023 [4 favorites]
posted by Dashy at 8:10 PM on August 5, 2023 [4 favorites]
What is the expected outcome if you don't have the surgery? I suspect it is not good. Surely your surgeon and the hospital know this. Tell them that the condition you require to agree to the surgery is having an independent third party or a third party who is your fiduciary present from the moment you are in any way medicated until you are cleared to leave the post op ward and no longer feeling the effects of the sedation.
I would also find out if the surgery can be done under local anesthesia. I have had colonoscopies, stents inserted in my LAD artery, and wisdom tooth extraction with no sedation except in the wisdom teeth removal I had novacaine. People have trachea tubes inserted in an emergency without sedation or pain relief.
posted by JohnnyGunn at 9:42 PM on August 5, 2023 [1 favorite]
I would also find out if the surgery can be done under local anesthesia. I have had colonoscopies, stents inserted in my LAD artery, and wisdom tooth extraction with no sedation except in the wisdom teeth removal I had novacaine. People have trachea tubes inserted in an emergency without sedation or pain relief.
posted by JohnnyGunn at 9:42 PM on August 5, 2023 [1 favorite]
If it were me, I'd also target the phobia itself. If there's anyone in your area that does hypnosis (like a therapist that does it, not just a dude at a new age store), that can help with your phobia. EMDR does wonders for phobias, but it takes a few months and is exhausting to do. (I still recommend it; you just have to be at a good place for it.)
It sounds like you only reached out to the one place where you were a former patient. Please try them again or call other therapists to see if someone can see you, at least short-term, to help with this. Psychology Today's website has an excellent tool for finding therapists that take your insurance and have specialties compatible with your issues.
posted by mermaidcafe at 10:14 PM on August 5, 2023
It sounds like you only reached out to the one place where you were a former patient. Please try them again or call other therapists to see if someone can see you, at least short-term, to help with this. Psychology Today's website has an excellent tool for finding therapists that take your insurance and have specialties compatible with your issues.
posted by mermaidcafe at 10:14 PM on August 5, 2023
My surgeon is kind of an asshole. He was angry with me that I went to the ER and annoyed that I read my chart on the patient portal. He was incredulous that I didn't fully complete my first course of thyroid cancer treatment because I couldn't afford to take the pregnancy tests mandated by nuclear medicine that my insurance wouldn't cover because I cannot get pregnant. I clearly can't explain all this phobia stuff to him.
I don't have the phobia you describe, but I would not offer that kind of asshole an opportunity to approach me wielding a scalpel whether I were sedated or not.
My first step, if I found myself in anything like your circumstances, would be to dump this motherfucker and find somebody I could explain the phobia stuff to. Health care should be you and your team vs your complex and life-threatening condition, not you vs cancer and PTSD and the medical profession.
I don't think he will be pleased if I waste his time with this stuff.
Then it's on him to learn not to waste his patients' time by acting like such an entitled prick. Your surgeon's precious fee-fees are not something you should ever be required to be responsible for, and if they are, you're dealing with the wrong surgeon.
posted by flabdablet at 11:24 PM on August 5, 2023 [8 favorites]
I don't have the phobia you describe, but I would not offer that kind of asshole an opportunity to approach me wielding a scalpel whether I were sedated or not.
My first step, if I found myself in anything like your circumstances, would be to dump this motherfucker and find somebody I could explain the phobia stuff to. Health care should be you and your team vs your complex and life-threatening condition, not you vs cancer and PTSD and the medical profession.
I don't think he will be pleased if I waste his time with this stuff.
Then it's on him to learn not to waste his patients' time by acting like such an entitled prick. Your surgeon's precious fee-fees are not something you should ever be required to be responsible for, and if they are, you're dealing with the wrong surgeon.
posted by flabdablet at 11:24 PM on August 5, 2023 [8 favorites]
Without knowing your diagnosis, I can't say there are definitely options beyond surgery, but I was a throat cancer patient 10 years ago and they attempted surgery to remove the tumor and they couldn't, so under the guidance of my excellent oncologist we switched course and opted for targeted radiation therapy which ended up being successful.
Have a conversation with your oncologist as the next step.
posted by OHenryPacey at 12:41 AM on August 6, 2023 [3 favorites]
Have a conversation with your oncologist as the next step.
posted by OHenryPacey at 12:41 AM on August 6, 2023 [3 favorites]
Those are awful experiences - I’m so sorry they treated you so badly - and it sounds quite rational to be afraid, given that history.
I wouldn’t call this a phobia (a “you” problem), I’d call it “PTSD because a doctor sexually assaulted you while you were under twilight sedation and unable to move” (a “them” problem). Find a female doctor and tell her exactly what happened, and ask her what strategies could help.
One creative solution might be to require that they have a camera with sound running for the whole procedure. Should keep them honest to know they’re being documented.
A doula is a fantastic idea, too. A lot of people have trauma that surfaces during prenatal care and birth, and a good doula can be very helpful in managing those feelings and responses.
It’s important for you to be able to access medical care so I hope you figure out ways to help heal that trauma response. Sending you good vibes!
posted by nouvelle-personne at 6:57 AM on August 6, 2023 [6 favorites]
I wouldn’t call this a phobia (a “you” problem), I’d call it “PTSD because a doctor sexually assaulted you while you were under twilight sedation and unable to move” (a “them” problem). Find a female doctor and tell her exactly what happened, and ask her what strategies could help.
One creative solution might be to require that they have a camera with sound running for the whole procedure. Should keep them honest to know they’re being documented.
A doula is a fantastic idea, too. A lot of people have trauma that surfaces during prenatal care and birth, and a good doula can be very helpful in managing those feelings and responses.
It’s important for you to be able to access medical care so I hope you figure out ways to help heal that trauma response. Sending you good vibes!
posted by nouvelle-personne at 6:57 AM on August 6, 2023 [6 favorites]
CBT doesn't require exposure to the phobia to help, so please don't give up on that route yet.
This surgeon is awful, phobia or no. Dump him of you can. Otherwise, talk to patient advocacy, social services, or the ombudsman. Having someone present as an accommodation for your disability seems reasonable to me. I don't know if there's a precedent for that under the ADA or other disability laws (if you're in the US), but an accommodation has to be evaluated on a case by case basis.
posted by Mavri at 9:07 AM on August 6, 2023 [1 favorite]
This surgeon is awful, phobia or no. Dump him of you can. Otherwise, talk to patient advocacy, social services, or the ombudsman. Having someone present as an accommodation for your disability seems reasonable to me. I don't know if there's a precedent for that under the ADA or other disability laws (if you're in the US), but an accommodation has to be evaluated on a case by case basis.
posted by Mavri at 9:07 AM on August 6, 2023 [1 favorite]
I'm so sorry this happened to you. Can you get referred to another surgeon, and find out what their bedside manner is ahead of time? I feel like that will solve most of your problems.
posted by foxjacket at 12:33 PM on August 6, 2023
posted by foxjacket at 12:33 PM on August 6, 2023
All of the above above. Get a surgeon who isn't an asshole.
Look into having an "observer" in the OR.
But get your treatment. I am doctor avoidant, and severely needle-phobic. When I had an issue last Thanksgiving I brushed it off for several days. Big mistake.
Ended up in the ICU for three days on a ventilator, with the docs saying to my spouse, "he might not make it", three weeks after that in the hospital, five surgeries, and going on now for about 9 months of pain and horribleness. And that wasn't for cancer. And FWIW, I am really glad I had sedation. Wish I had had it every day when they changed and cleaned my dressings, (and they gave me really good drugs before doing it).
It is terrible what happened to you, but you have to make it work. You must. Or you will be dead. For those of us in this boat, you have to make it work, or you will die. Call all the people mentioned upthread and get it done. You can do this.
posted by Windopaene at 1:09 PM on August 6, 2023 [3 favorites]
Look into having an "observer" in the OR.
But get your treatment. I am doctor avoidant, and severely needle-phobic. When I had an issue last Thanksgiving I brushed it off for several days. Big mistake.
Ended up in the ICU for three days on a ventilator, with the docs saying to my spouse, "he might not make it", three weeks after that in the hospital, five surgeries, and going on now for about 9 months of pain and horribleness. And that wasn't for cancer. And FWIW, I am really glad I had sedation. Wish I had had it every day when they changed and cleaned my dressings, (and they gave me really good drugs before doing it).
It is terrible what happened to you, but you have to make it work. You must. Or you will be dead. For those of us in this boat, you have to make it work, or you will die. Call all the people mentioned upthread and get it done. You can do this.
posted by Windopaene at 1:09 PM on August 6, 2023 [3 favorites]
Definitely look for the cancer center social worker. And also, maybe there is an anesthesiologist at the hospital you can meet with ahead of time. I had a couple of issues with anesthesia, and the following surgery I was able to discuss them with a really caring anesthesiologist who went above and beyond to address them. Maybe there is a way you can establish a relationship/trust. But I agree with the people suggesting finding another doctor.e
posted by beyond_pink at 5:34 PM on August 6, 2023
posted by beyond_pink at 5:34 PM on August 6, 2023
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Beyond that: if you can find a doctor who's not an asshole, see if they can recommend someone who they know isn't this kind of an asshole?
posted by jenfullmoon at 3:47 PM on August 5, 2023 [7 favorites]