Transcript: Episode 317
317. Guest: Cathy Collyer (Self-Care for Medical Care) (Part 2)
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Our guest this week is Cathy Collyer, who's an occupational therapist also diagnosed with dissociative identity disorder. A content note for this episode includes a trigger warning for discussion of medical appointments and procedures, including related triggers. As always, please care for yourself during and after listening to the podcast. Thank you.
*Conversation continues*
[Note: Podcast host is in bold. Guest is in standard font]
Any other pieces from your book? I know you said you had an example, and we can talk about that in a moment. But any other?
The last part is the part that I think is really unique, which is talking about practicing all of the skills until they are easy and effective. That learning how to do even this, even the simplest technique like looking for five red and five blue things in the dentist's office to orient yourself to the present space. Once you're dissociated, it's hard to even remember that you learned a technique at your therapists office. Right. And that's about the most simple one I can come up with. A book that I own that’s really terrific that's really for therapists, you know, talks about that being so simple you can teach it to a child. And the problem is that if you don't know what it feels like to be very dissociated, you might not realize how hard it is to remember to do that.
Right. It's an access issue. Remembering and being able, having capacity to access that resource as a tool. You can't use the tool if you can't find it.
Right. And so, I, in my book, I talk about how emergency providers, you know, ER doctors, EMTs, they practice, firefighters, they practice their techniques so that they can they can use their techniques immediately in an instant. It becomes almost intuitive. We need to be that good. Because the effect of dissociation erodes our intelligence, our recall, our organization, our logical thinking erodes so very much.
I am particularly fascinated with the neurology of dissociation. Being an OT, I've always been interested in neurology. And there is, there's a, there is some research out there, not a lot on DID. We tend to be sidelined as research subjects because, again, we're very complicated. But there's a lot of understanding now of the effects on the midbrain. That the fear response, that terror response, happens in the midbrain. And all of that thinking of “Oh, I remember a technique. Red and blue things.” That happens in the cortex. Well, if you are stuck in a lower brain level, you don't have access to it. And then when your therapist says, “Did you use the technique I taught you a month ago?” Then you have to go, “No, I forgot.” And suffer the, you know, the feelings that come about. So my suggestion, and the book has a chapter completely on practicing, actually, it's two chapters on how to practice for effect when you are in an appointment. You cannot assume that practicing in your therapists office will carry over into a doctor's appointment. How to pick the exercise, the exercises and strategies that are most likely to be helpful and the easiest ones you can think of. I talk a lot about practicing at the very end of the book. The last chapter is on how to use salon appointments, things like manicures and massages, as practice labs. So that people get so very very good at all of the techniques in the book that they have access to it at a doctor's office, in the hospital, in the emergency room, when it really matters.
I love that idea. Except if that's the continuum, then I'm going to have to get creative because I can't go to the salon or to get a manicure either.
No. There are more options in that there are, I give you an example, going and getting a sandwich at the deli. And simply asking for what you want or being offered something and refusing it. Being you know, being able to say, “Give me a minute. Let me think of what my options are because you guys are out of Turkey and I'm not sure what I want.”
The thing I love about that is that it gives a framework to recognize the skills that you're building without shaming you for not having them yet.
Yep. I don't I don't believe shame is a very effective technique for anything. But skill building is not easy. And so I wanted to I wanted to weave in as many strategies in my book as I possibly could. People will pick and choose what feels right to them. And one of the statements and the conclusion is that when people start this process, there may be strategies that I've suggested that feel far too difficult. As they make progress, that may change. And, so, you know, leaving open the possibility of change and hope. Which I think is extremely important. That where you are today does not mean that is where you will stay.
You said that you had listened to the episode about us going to the dentist. What is it that you heard that you wanted to talk about?
Oh, well. Everything you said I thought was completely familiar to things that I've heard other people say. I have a mild, I think, aversion to the dentist. It is not something I look forward to. But it has not been my most difficult appointment. You know, in case you're wondering, my most difficult appointment is, it's definitely a pelvic exam. Oh, yeah. There we go. No question about that. That is the, that is the Everest of my appointments. But when you, when you were talking about the different strategies, like using weighted blanket and sunglasses, what I thought was that I believe absolutely the same strategies and essentially the same problem neurologically, you know, that children with autism have. We know now that there are areas of the thalamus and areas of the midbrain, there's a lovely little spot called the periaqueductal gray. And that definitely is a huge trouble spot for people with dissociation. It is pretty well understood that the thalamic relay stations go to fear for people with DID. They should go to discrimination. They also do the same thing with children with autism. So a novel experience is always looked at as “Is this dangerous to me?” rather than “Oh, looky, something new to explore.” Does that sound familiar?
That's amazing, both for myself and for my son's with autism. That makes so much sense.
I, OTs know this. Hopefully your OTs know this, and your children’s OTs know this. But, you know, I know this very well. You know, these are very primitive structures that tell us whether we're safe or not safe. And people without a dissociative disorder, even people with trauma histories but not necessarily with a dissociative disorder, can move more smoothly into that discriminative brain state. I would say for myself, I pretty much live at that orientation state: fear, no fear, danger, no danger. And I have to work very hard to use with the techniques that I know to make to make my nervous system be able to be discriminative instead of always orienting for threat.
That's so powerful. It's so empowering. And again, understanding what's going on and why it's going on helps take the shame out of the picture so that we can stay present with it long enough to practice it. And I love that.
I find neurology fascinating and, you know, and I don't believe that there will be an answer. I, you know, a treatment for DID that is purely medication. You know, it's just a little too complex to imagine there's going to be a drug that will, you know, solve all of this. But I think, I think we are understanding more of the neurology. And then you kind of reverse engineer and go, “Okay. If this is what's happening, what do we know in science that alters the brains functioning in a way to enhance a sense of safety and a sense of being present?” And so things like Emotional Freedom Technique, the tapping technique, is almost certainly affecting people because vibration triggers the brain's ability to perceive vibration and have a greater sense of interoception. So, in my opinion, that is what EFT does for people. There is a device in EMDR, these little buzzer things that people hold in either both hands or they stick them under both thighs. And, and my opinion as an OT is that, again, vibration, especially if it's conducted through bone, which is a really powerful way to send in important information to the brain, tends to act under gait theory. In other words, it runs on Big C fibers and tends to dampen down the threat response. Does that make sense?
Absolutely. That's so helpful. Thank you.
There are other ways that OTs use vibration. That, in my opinion, are the kind of tapping on steroids. [Laughter] In other words, we know enough about the nervous system to enhance and deepen sensory input. I'll give you an example. I know that I've read in a couple of different books on treatment techniques for people with DID, you know, to recommend, say, a fidget toy or holding a silky piece of fabric. And as an OT, what I will tell you is we know that there, that certain sensory input is more powerful to the nervous system, more intense, creates a longer lasting and a wider range of responses. Touch is not one of the more powerful inputs. So you might have to squish that stress ball for hours, you might have to cover yourself in silky fabric and be there for hours, to have the same effect as some of the more powerful techniques that OTs use. Compression and weighted garments used together are pretty amazing. Binaural beat technology works incredibly quickly and can be very long lasting. As an OT I would never use a low power tool if I have a high power tool to affect a child's status. So I'm hoping that therapists reading my book might consider consulting with an OT. Because people with DID struggle, I know I struggle, I'm pretty open about that. And, and no one wants to struggle harder than they need to.
If I were the boss of the world and had all of the money [Laughter] to create treatment teams for people with DID, it would absolutely not just be a therapist and a psychiatrist and a caseworker. But there would be, like Annie Goldsmith has been on the podcast talking about disordered eating and the impact of trauma and dissociation with eating, and OT would be there. Because it makes such a difference. I can't, like there's not enough words. There are not enough words to explain what a difference that OT can make. And I love what you've just shared.
Now, the other day I was playing outside with the children and we, they wanted to swim, and we were getting in the pool. And I said, “I love swimming because it's the only time my body doesn't hurt.” And my son with autism looked at me, and I was referencing my trauma, but they didn't know that of course. But I said, “I love swimming. I just want to be in the water. It's the only time my body doesn't hurt.” But my oldest son who has autism and a TBI, he looked at me and said, “Mama, that's how I feel on a roller coaster.”
Yeah, vestibular information is really powerful.
That's amazing. That's amazing.
He’s telling you the truth.
Anything else that you wanted to share with us today?
Well, I thought that it, you know, it might be helpful to talk about both dental visits and pelvic and prostate exams. Because when I talked to people and I said, you know, “What should I include in my book?” those, you know, those two things went right to the top. Which is why the book is not just managing medical care, it's also dental care. My therapist told me she couldn't wait to read my book because she has a client who is a dentist and is aware that they don't have enough tools for their patients. So what would you like to hear about first?
Let's just go with the dentist since we were talking about that already.
You got it. So one thing that I would say is that one of the most important things in terms of working with parts is learning how to not bring parts that don't want to go to the dentist. Not every part has to go. An adult part usually has to go because that is the person who drives the car or takes the bus, who hands over insurance or pays with credit cards. An adult has to go. But not every part has to go. And being able to understand how to do that, how to have not every part show up, is probably job number one.
The other part of, the other important beginning strategy is orienting to the present. Really having a solid sense of being an adult and understanding why you are getting a treatment. Whether it's a cleaning, whether it is a repair, understanding why you will be in that chair while you, why you will be experiencing the kinds of physical contact, and being able to be reminded of, you know, what the positives are, why you are there. I think that it is entirely possible for people to wear compression garments generally with dental appointments. You don't have to take off any street clothes. So you could have a, you can have as much compression as you wanted to wear during the entire appointment. And there are weighted garments that really do look like street clothes. You can get a weighted hoodie. It looks like a real regular hoodie. It does not look like a piece of therapy equipment. And that can be worn on the way to the appointment, it can be worn in the waiting room, it can be worn as you're paying for the service, and as you're going home. Where a weighted blanket, you know that stays in the dentist office, comes on and off. You know most people who have DID need a lot more and a lot longer support.
I encourage people to take breaks, to explain that they will need to sit up, You know, Pat Ogden and the sensorimotor people, I think they understand how important an erect posture is for orientation. I don't believe that they understand all what happens to your brain and your vestibular system and your proprioceptive system when you sit up. But it is very powerful to request that, to schedule that, and to use that even when, you know, when the dentist is saying, “Do you need it or not?” The answer is you probably need it even if you don't realize you need it. At the moment dissociation makes it harder to think logically.
Let's see, I would say being able to communicate consent, as you know, that's a pretty common strategy. Being able to say when you are ready for a procedure to begin, when you need a break. And I think that's absolutely essential.
Some people do listen to music. My dentist has music. He has a TV screen above the seats. So I could watch CNN if I want to. I don't want to. I don't need to hear about anybody else's problems. But, you know, listening to binaural beat music during treatment is often possible. Not always, it depends on what the procedure is. But that could really work out well for people.
Those are brilliant ideas.
Thank you. Do you have any questions for me? Or would you like to hear more about my strategies to survive pelvic and prostate exams?
Sure. Let's go for that.
[Laughter] Right? Yeah. I mean, no point in, you know, in ignoring it. I, you know, as I said, that is my personal Everest. That is, that appointment, even after all these years, is still the very hardest for me. I you know, I think it's pretty obvious why it would be difficult for a lot of people. But I do believe there are things that can be done. Of course, children don't go to pelvic exams, so there is no reason to have child parts present. If you are capable of using techniques, usually the kind that you would learn with a psychotherapist to help parts be somewhere else. My therapist was one of the creators of safe space imagery, and that was one of the reasons that I sought her out. And learning how to create a safe space for parts. Some people use a conference table, some people create playhouses for parts to be in. Whatever your technique is, I think that that's probably number one.
There are ways to perform a pelvic exam that don't require the traditional position. Even if it's all, even if the position change only happens for a portion of the pelvic exam. We know this because there are people with disabilities that physically cannot get into what's known as the lithotomy position. And so, we know that there are other positions in which pelvic exams can be done. The sims position is a position where the patient is on their side and they are positioned so the physician can perform some of the traditional exam, but because the person is not in as vulnerable position, it could by itself, significantly decreased dissociation. The draping that's done, you know, how covered up a person's body is, can vary and it does not have to be as extreme as the traditional draping. Traditional draping is done for the physician’s benefit. But it is not always necessary to perform the exam. We know this for patients that have religious practices where they just are not that uncovered. It can be done and it really needs to be thought of. There are different ways to perform pelvic exams that are not as extreme. One strategy to be very specific is to start with a pediatric speculum, which is much smaller, and quite frankly to use enough lubricating gel and warmed lubricating gel that it does not create a shock to the tissues. Without being any more specific than that. That would require that the provider be on board with some of these adaptations, but it can make a huge difference. And the, even if a person with DID can manage to incorporate half of the adaptations that I've just described, that is extraordinarily empowering. To find out that you can have agency in a vulnerable examination.
That's incredible. Thank you so much for those ideas.
I felt it was really important to emphasize that in the book. You know, I'm hoping that my proposal to speak again on this subject at Healing Together will be accepted, because when I spoke in January, what was obvious is that people really wanted specifics. What can I do? What can be done? They didn't want generalities, they wanted specifics. And some people find it very triggering to hear what I just said. And hopefully people listening to your podcast, you know, you might be might, you know, need to insert a trigger warning before that description. I'm aware of how triggering it can be. The only thing worse than that is being triggered in the exam. Absolutely.
I just, I felt it was very, very important. You know, at some point, I may end up writing more of a workbook so people can work with, you know, with some materials to process all of this. And you know, I might end up writing a book for providers. But getting the information out to providers is a lot harder than I'd like it to be. It's very difficult.
It's so true. What, what about men in the prostate exam?
So, for prostate exam, in general, the way it's done is kind of quick and dirty. Guys joke about it, doctors joke about it. The same idea about draping and positioning in a position that's not quite as invasive as “drop your pants and bend over,” which is basically how prostate exams are done. That sims position where the patient is lying on their side, one knee comes up further to their chest than the other, would allow a doctor to be able to do the exam very effectively, but it is a far less invasive experience. And again, you know, understanding that tissue tends to tighten under stress. And if the provider is able to appreciate that these procedures, prostate exams, really should not be done incredibly quickly and with a lot of joking. That doesn't help anybody. So, I would recommend that people that need a prostate exam, if you own a prostate, then you have more agency than you realize in terms of getting that exam.
And truly understanding that the physiology almost always tends to heighten people’s sense of “I am getting aroused. What does that mean about me?” And it means absolutely nothing because neurology is involved. And so understanding that. I wish physicians would be much clearer with their patients that, you know, that that physical responses do not quantitate arousal, acceptance or enthusiasm. Is that clear?
That is so powerful and absolutely applies even to traumas itself, as well as processing traumas in therapy at times. And, and I think it's a huge piece we need to talk about more explicitly for sure. I'm so grateful for you including that. Thank you.
Absolutely. Absolutely. Unfortunately. I think the demographics of people who get diagnosed with DID skew toward white women. That couldn't possibly be an accurate representation of the demographics. Medical care, access, openness in the profession, all seem to impact that. And I think that unfortunately men in mental health have gotten kind of a raw deal in terms of DID. So I thought it was important to add that in.
Thank you so much for talking to us today.
It was a pleasure. Oh, I do want to share with you a couple of things. Um, are you familiar with different mouth rinses and toothpastes for issues around dry mouth? Only what my doctor prescribes. Are you using PreviDent? Yes. I'm not sure the PreviDent is a bad choice. A friend of mine has Sjogrens and she uses it. I did want to mention that there is another option. It's called Livionex. I think now they call it Livfresh. It's a dental gel. And Stanford did a study comparing Livionex and PreviDent and they basically said that they were equivalent, except that Livionex had more of an anti-inflammatory effect.
Oh, that's fabulous. That's helpful because when that information comes, they put me on that nasty mouthwash that is the antibiotic one that makes your food taste bad. So being able to address that differently would for sure help.
So what you can tell your dentist is according to the Stanford research study, they-. I don't know how Livionex does it. I'm pretty good at science, but this is beyond my paygrade. Apparently, it does something called, it sequesters calcium. Basically, it doesn't allow calcium to increase the permeability of the gum’s skin. You know, so your skin literally takes in stuff. And Livionex decreases that permeability to calcium and that creates an anti-inflammatory effect. I use something called CloSYS, it’s a mouthrinse. Oh, yeah. I got the ultra-sensitive version because of course having DID, I'm just walking nerve endings some days. And CloSYS is an incredible mouthrinse for daily use. It's pretty powerful. My new dentist recommended it and I am all over that. I used to use a lot of biotene stuff, but I found that this one is working a lot better.
Oh, that's good to know. We have biotene as well. Are these prescription, or you can just order them?
I got this at Walmart.
Excellent. Thank you for sharing so much.
Livionex is, you know, you have to buy it from the company. I don't know if Amazon sells it any longer. But they always give discounts. It is not inexpensive, but then again, neither is PreviDent.
[Laughter] That's true. Thank you so much. So grateful we got to talk to you today.
This was a lot of fun.
Thank you so much.
It was a pleasure, Emma. Have a great afternoon.
Thank you. Bye.
Buh bye.
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