Transcript: Episode 316
316. 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 begins*
[Note: Podcast host is in bold. Guest is in standard font]
Okay. My name is Cathy Collyer. I am an occupational therapist in private practice in the New York City area. I'm also a massage therapist, but I don't currently practice as a massage therapist. And I have DID. I wrote a book, Staying In the Room: Managing Medical and Dental Care When You Have DID, which has just gone to paperback version on Amazon. It's also available as a ebook. And I'm so excited to share with you and your audience what I know as an OT, and what I know to help people with DID and OSDD get better care and be more comfortable with the care that they receive.
So this is fascinating to me on my end, and let me tell you why, besides just the care that I clearly need. But also, we have six children adopted from foster care all with different disabilities, and our family would not function without OT. [Laughter] And so I just want to acknowledge that going in that I'm bringing that into our conversation. Because the way I have seen OT teach my children—and us too—but teach my children what their bodies can do, instead of what their bodies can't do, and how to use tools, and how to use the resources that they have complete access to, completely changes the framework they operate from. I can't do what other kids can do so here's what I can do, and this is the way I do it.
I am so happy that OT has helped your family. That is our job, you know. But I became an OT because I wanted to help people improve their independence and their ability to joyfully function in life.
You spoke at Healing Together, and you shared about your DID a little bit. What was that journey, what has that journey been like for you as far as finding out about DID and trying to work and function with DID? What about that do you want to share?
When, when I realized that I had DID-. It wasn't called DID, it was called multiple personality disorder. That's how old I am. And it really became evident to me what was going on once I started working with children. But looking back, it's been obvious that I had parts as early as fourth grade. And you know there was never a really a time when things, when life was easy for me. But, you know, I've been very fortunate. I have been, you know, I've had a good career that has not been significantly disrupted in any way by DID. I had the opportunity to have really good therapy since I was about 20.
But until five years ago, nobody really knew what to do about DID. Treatment for DID has only recently, I think, become easier to find. So a lot of the therapies that I did were really excellent. I found great providers. And they certainly worked with me on childhood abuse issues. They worked with me, you know, through the body. I worked with a bioenergetic therapist for I want to say about 12 years. And that treatment was incredibly physical and incredibly challenging. And it really helped me, but it didn't help me work with parts, because that therapist didn't know that I had parts. I knew that I switched, I just didn't know that there was good treatment for multiple, what was called at the time, multiple personality disorder. I now work with an expert in trauma treatment that's based in the Boston area. And you know, and quite honestly, my life has changed.
What made the difference?
Working with parts. Understanding how structural dissociation comes about, how it functions in my daily life, how to work with parts, how to stay oriented and grounded in the present. And, yeah, you know, definitely it has transformed my experience. That does not mean that I do not switch. I am not integrated. That doesn't mean that parts do not take executive control. It does not mean that I'm not aware, at any minute, including my current minute, you know, I'm aware of the influence of parts. But, you know, my, my day to day life is so much better because I know how to work with parts,
I feel like that is a significant piece that really shifts things from getting oriented in the world to trying to function in the world. What is that like for you when you're trying to work or in other areas of your life, being able to function but also tending to these other parts? Even though therapy is not over yet, so to speak.
It is like managing a extraordinarily dysfunctional corporation. I won't, I won't lie. But, you know, parts, parts, have their own agendas. Parts, you know, have their own ideas about how things should go. And luckily, I have at least one professional part. And I'm sure that that part is functioning now because I can look at my desk and see that this is clearly, you know, what's laid out in front of me clearly is what a professional part would do. And, and again, I've been very lucky that you know, that when I am working or, you know, doing something in a professional capacity, you know, those parts show up. In personal relationships it gets a little bit more complicated because anytime that there's more of an intimate, more personal connection, a lot more parts have a lot more to say. And I have to work a lot harder to support the system. But again, you know, it's a process.
You shared about this at Healing Together. And I actually only got to hear part of the presentation. So I'm so excited that you’re back and going to talk to us now. But one of the things that I love about it is that it absolutely fills a gap in the literature. Because when we talk about parts work, or we talk about therapy work, or different kinds of workbooks and coping skills, yours is specifically for the medical kind of setting and how to care for yourself in that. Tell us about your book.
Well, I will tell you a couple of things. One is that I was not necessarily going to write it. I was asking my osteopath, who is my primary caregiver. I wanted him to write a book. And that never really, you know, panned out. He, you know, he made it clear that because I have DID, and because I am a medical provider, I actually have the, you know, the right background to write this book. That his training really doesn't give him an insight into what it's like to have DID. And my training, especially my pediatric training, has taught me what it's like to work with people who don't have words for their experience.
Let me think. What else do I want to tell you about my book. One thing that I felt strongly about-. Actually my therapist and I somewhat disagree on this. She wanted me to broaden my scope a bit and talk about people with a wider range of dissociative disorders. And I said that, you know, through the years, I had always felt very, I had always felt that in group therapy where everybody in the room had been a trauma survivor, that because I seem to be the only one with a dissociative disorder, that I was singled out as either too much, or too complicated, or too hard to understand. And so I really wanted my book to be specifically for people like me, people with DID. And, you know, I wanted to say, you know, we are not too much. In a lot of a lot of books on treatment, and even some of the books that are related to, you know, kind of crossing the boundary between a book on treatment and a book on talking to trauma survivors, we end up relegated to chapters with titles like “Treatment Challenges,” or “Complications In Treatment.” And I got a little tired of that. Right.
So my, you know, my book certainly is applicable to people who are, you know, survivors of lots of different kinds of trauma, people who have PTSD. There's a lot in this book that will help people who do not have a dissociative disorder. But quite honestly, they're going to have to experience what it's like when the book is not all about you. That makes sense. Sort of, sort of the reverse privilege there. It's my book. I got to write it anyway I want. [Laughter] That's funny. That's funny.
So, again, this is, you know, this is for all those times that I sat in groups and was very dissociative and, you know, and even the therapist went, “Well, she'll come back eventually.” And I know what that feels like to have someone go, “Ah, I'd like to help you. I just don't know, you know, exactly what's going on.” So that's, you know, that's my explanation. And unfortunately, you know, Chapter Two is all about that. The, you know, for partial solutions that that don't really work. Trauma-informed care, which really ignores DID, you know, and unfortunately, expecting to find, you know, the perfect unicorn provider who knows what to do. Those are two good examples of misguided and partial strategies.
So your book includes, your book is geared toward DID specific support. Correct. And then it includes that sort of that processing of that experience of these elusive things that really kind of add to our trauma when people don't know how to help or respond, or when we are holding out for something that's not really there.
I think a number of people, quite frankly, waste a lot of time and energy either searching for the perfect provider or hoping that if they do enough psychotherapy that then, you know, they will miraculously come out on the other end able to cope with any medical or dental treatment. And I don't think that's possible. But what I what I believe is that the answer to a problem as complex as DID and getting medical and dental treatment, the answer is building a better toolkit. There's plenty of room for providers to be more skilled. There's plenty, you know, everyone needs the best possible psychotherapy that they can get. The problem with that one, of course, is that stuff happens. Medical problems happen on the way to healing. And they can't be ignored. If you do, you'll end up in a bigger medical crisis. You know, people need treatment consistently. They need preventative treatment. But, you know, as they say, stuff happens.
So what does that look like when, when they, when we have a toolkit to do something like go to the doctor or go to the dentist?
So, I think that probably, you know, one of the first chapters actually, I think. You know, the first very first chapter of my book talks about why it's so difficult to stay in the room. I think understanding that the sources of all of the stress is important. I don't think people need to focus on it. But if it's understood by a person with DID or OSDD, I think it's a alleviate some of the, some of the frustration, some of the confusion. And, and to some degree gives you an idea of, you know, where some work needs to happen.
You know, in my own personal experience, yeah, I am a medical provider. I have been an OT for a very long time. That does not mean that receiving mental and medical and dental treatment is easy for me. You know, and sometimes quite the opposite because I know a lot. But simply having a wide knowledge base does not make all the difference. It helps. It definitely helps. But it is not the solution.
What is the solution?
Well, in my book the Section Two is giving people a better toolkit. And I will say before I describe to you the four different kinds of tools, that none of this works as well without working with parts. Working with parts is almost essential to for each and every tool in the kit. But there are some very specific tools that I believe really make a difference. The first one is to expand the concept and the number of stabilization strategies so that people with DID can stay in the present and be as safely embodied as they possibly can. I don't believe it is possible to receive medical and dental care when you are not fully aware that you are in the room, that you are safe in the present day, and you, and the people that are with you caring for you are not your abusers. If there's any confusion about that, I don't know how you could continue to receive treatment and not be extraordinarily dissociated. That sounds easier than it actually is. And anyone with DID knows I just said the truth.
So having not just, not just walking in with like “Oh, I’m supposed to tap before I go in,” but literally working with part to be oriented to what is going to happen and who is doing it.
Absolutely. There are, you know, there are a number of very standard stabilization techniques that many, many, many trauma therapists use. There is a look for red and blue things in the room. There is 5-4-3-2-1, using five different senses to sense what's in the room. I expand that in my book and talk about how to acknowledge being an adult and acknowledging the adult strengths that you have, but also acknowledging the strength of other parts. Parts have strengths. And when you have, when you bring to bear your full sense of your internal strength, that is, that's very powerful.
As an OT, I add in my book three of the many strategies that OTs use to build modulation and self-regulation in our clients. One is the use of weighted items. Another is the use of compression garments. And the third is something called by binaural beat technology. It is a sound treatment that guides the brain to an alpha brainwave state, which is our calm focused state, and it is also the brainwave state that enhances something called interoception, our ability to sense ourselves internally.
Our ability to sense ourselves internally. That's such a big deal.
It is huge, actually. I just did an additional training as an OT in interoception, and I learned a few tools this weekend that I had never heard before. And I'm definitely going to try them out. I see my doctor next Monday and I will have a great opportunity to find out if any of these techniques help me. But, but, that's not the only way to improve medical and dental treatment.
There's an another section in my book that talks about being able to communicate more effectively with providers, being able to pick a provider or leave a provider that's not helpful, being able to explain what is wrong physically—what you need, getting them to listen and really listen, listen to what your concerns and needs are. You can teach providers how to give you bad news. A lot of people with DID are absolutely terrified of hearing bad news and falling apart. Providers aren't very good, quite honestly, at expressing it in a way that's helpful. But in my book, I talk about how you can teach a provider to be better at that. The better they are, the better you are. And also to deal with something that in psychotherapy is called relationship rupture. Disagreements, misinformation, you know, straight out arguments are really hard for most people with their medical and dental providers, but they can be devastating for people with DID because of what authority figures represent. And so I talk about how to work with that. I think being able to communicate more effectively is really important. In fact, I, you know, that's one of the things that I think is limited in psychotherapy. You can learn assertiveness skills, but they don't always translate directly to this to these kinds of treatments. And so I focus on that. I did not write a book on assertiveness training, I wrote a book on communication with providers.
So even more than just advocating. Ways to empower yourself, to express your needs, so that you can be cared for in safe ways.
Well, you know, what we know about dissociation is that it that it affects more than it is maybe is obvious to other people. Structural dissociation affects memory, it affects the ability to think clearly. The more dissociated you are, the harder it is sometimes to even open your mouth and to say yes or no. And, you know, and we know that learning is essential. You know, being able to understand what you are told in a medical or dental appointment, to remember it, to have all the parts understand. Sometimes parts have questions. And if you are able to hear their questions but you cannot ask, then you lose a tremendous opportunity for parts to feel confident in the adult parts to care for the system. And so all of the effects of dissociation tend to erode efficacy in these appointments. And so I decided I was going to write about ways that that can be managed.
That makes so much sense. The not responding to your own part becomes misattunement. It's like relational trauma with yourself.
Oh, absolutely. Working within the system, as I said. You know, certainly in my system we are, we are an extremely dysfunctional corporation. And part of my therapy is doing a better job of listening to them, and a better job of responding to them, and helping them feel confident in my abilities to make life better for everybody inside.
What is another part from your book? You said, you mentioned four parts, and you told us about two.
So, another one is building health literacy skills. Health literacy is more than the ability to read the label on a prescription. It's also knowing how to do, you know, your own, take care for yourself in terms of preventive health. It's also how to get more information, to go on the Internet and be able to determine reputable information from disreputable information. Unfortunately, health literacy is harder to get when you have a system that is, you know, that has different agendas and has different ages.
So in my book I talk about how to support younger parts in terms of learning about the body, in terms of learning about health. There are a number of terrific books written for children and teens, there are books on adulting that talk about how to go to a doctor's appointment. And very often younger parts really want to see that material. Looking at a research article from a medical journal isn't very helpful to a very young part. But they might really like videos. They might really like cartoon graphics. And, and that doesn't seem evident to the physician or the dentist because you present in the world as an adult.
One thing that I wanted to show you. I love Costco, Costco and I are friends. And when I walked through Costco and I saw this high end Band Aid company called Welly. And I saw their set, the parts went nuts because they, this is a set for travel and they felt that that would be such a good thing to have in our suitcase when we traveled because we wouldn't worry about whether we had the things to take care of us if we got injured in some way, you know. And simple injuries, scrapes, cuts, things like that. They love the band aids with llamas on them. Externally, it looks a little unusual for me to wear a llama band aid. But the parts went “This is terrific, we love this.” And there are other parts that went, “This stuff is really very good quality, far better than the generic band aids that we already had in the closet.” And you know, one of the things that I grew up with is I grew up in a well to do family that didn't want to spend any money on me. So I am changing that script and I'm buying high quality things for us. That's what I think, too. It's not something that any therapist has ever said to me, “Why don't you buy really good stuff. And while you're at it get really high quality items that appeal to younger parts.” Because I present as a mature professional. But that's not all there is to me.
Right. Right.
*Conversation pauses*
[Break]
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