(Adapted from the "It Hurts to Mom" podcast 5/5/2023)
Deva Joy
Deva Joy Gouss is a psychotherapist in Atlanta, Georgia, an author, and she's worked with lots of people with chronic illness, pain, and disability.
Tell Us a Little Bit About What It's Like Living with Chronic Illness
DEVA JOY: Well, I have lived with chronic illness now most of my life. I was diagnosed when I was 14.
I had already lived with it when I was 13, and I just woke up with my bone out of place in my foot, and I was at camp, and I made a joke that I had a bad dream.
And then by the months later, I couldn't walk, and I couldn't lift my arms to brush my hair. And it was a complete interruption, obviously abrupt interruption, of a normal childhood.
And so for me, I call it Arthur.
I named it—it's one of the most intimate, internal private relationships, because—and we each know—every single moment is impacted by having pain or a disability and having to track yourself.
And you know that you can't do what you might see other people do, and so for me, it's really helped shape who I am and how I serve and how I think of myself, and how I think the work certainly has opened my heart to great compassion.
And even though we might be really alone, and feel alone in our pain, and no one else is experiencing exactly what we are experiencing. For me, it's been a deep bridge to all beings, because we all have some sort of whatever our illness, or pain is, every single being has that at some point, if you live long enough. And so it's this bridge into unity, maybe, as well.
It's really taught me also how to listen and slow down. I mean, that's been a must, obviously. And to really listen to my body and learn how to really be in my body. In some ways it's really grounded me.
It's landed me into my body because of the pain, like when one has pain, it's like BAM. We're right there in our pain. And so I've learned to grow to love my body.
I have compassion for my own body. Let's put it that way. And to learn what can help it to ease up and flow more, and what hurts it, and what—whether it's from foods or movement, or thoughts, or breath, or a certain exercise or connection—it's like what my body will tell me.
It's immediately like, is this good? Maybe not sometimes. So it's really helped me learn about that.
It's also helped me like it's been essential to focus on the gifts of it, actually. You know, what I'm learning from it, because I think that illness has a—and I've seen this with my clients, too—has the capacity to really bring us down—like seriously down.
And isolated, and into a very dark space, where we do feel like a victim or martyr.
You know it becomes all of that. And so I found as a child I think I knew unless I turn this around to try to focus on the gifts of what I can move, let's say, instead of what I can't move—even if it was a pinky, or my dog licking my face, or anything that could help my vibration to list, I I really became a huge student to like what helps me lift—because if I didn't do that, I felt like I'd be swallowed up by it.
And my whole identity would be having an illness and pain and I didn't want that.
I wanted it to be from the very beginning a relationship.
As a therapist. I see everything in terms of relationships.
And we have a relationship with our pain. We have a relationship with our illness.
And I knew this as a child. We are going to share the same body for the rest of my life.
So I have to somehow make friends with you, and that came to me when I was 14 and officially diagnosed—how to make friends with this.
ME: You just said so many brilliant things in there about the isolation and loneliness, and about the pain being our identity.
And I can't believe that you came to that realization at such a young age. You know, before you had all the life experiences and your prefrontal cortex was fully developed. And so that's amazing.
DEVA JOY: You’re right. Our frontal cortex doesn't fully develop til 25.
So there was some sort of blessing that happened, like something whispering inside like, "We've got to make friends with this."
And the first way I knew to do that is to know a name of something, right?
So I knew I had to name it different than what the doctors were calling it, because when doctors talked, especially as a child, the words they used—chronic, deteriorating, what can happen, how you could be in a wheelchair, whatever—it was so scary, so the words rheumatoid arthritis were scary. I knew I had to own it in a different way, so I called it by its obvious—Arthur, but I knew that Arthur was a teacher.
I wrote an article when I was in college called “The Teachings of Arthur”, and that has been my perspective, I think, because I approach my body in this way and the pain that I live with.
Then, everything in my life becomes that way. Whatever obstacles or losses I approach it through, “Okay. What am I? How is my soul evolving through this? How do I grow through this? How do I use this? How do I make lemonade out of out of this?"
And it also, I think, has taught me from a young age to be a warrior, and I think all of us who live with pain are warriors, because just getting through the day and holding our head up is a really big deal, when sometimes we just want to crawl into a hole and curl up and under blankets and cry and not move, because it's all painful.
I want to tell you a story. I was having tremendous pain, and I was heading towards a foot surgery. It was a big deal like they're going to take ligaments and things from other parts of my body and put it down there.
And my friend researched it, and she discovered that all sorts of problems happen because of it.
And so, accordingly, I had this dream that said, “Don't do it”, and what I realized is I was going to not do it because of the problems that might come from it.
I fell into a depression because I was looking forward to that surgery helping me.
And now I'm releasing it, and all I have now are these pain signals?
And I went into a depression, and I woke up in the middle of the night one night, and I had the message that these pain signals are not serving you.
So usually we have a pain signal and it tells us to do something different. But for those of us who live with chronic pain, those pain signals keep on coming, and there's nothing specifically different necessarily that we're supposed to do except tweak this or shift that a little bit.
So I knew that I needed to change my pain signals’ direction. And I didn't know what I was doing, Lauren, but I crawled into my brain, and I imagined my brain and the synapses that were giving me the message like, this is pain. This is pain. Do something.
So I started to massage and rub the parts of my body and move them to the degree that I could that hurt and imagine my brain just rewiring, so that I wasn't getting the signal as intensely, and I started saying gratitudes for these parts of the body. And I’m telling you, it worked!
Really, it shifted it so that I felt much more spacious and less impacted by the pain. So that was all made up. I mean, I didn't go to a specialist on brain or anything.
But I think there's something about knowing, okay, if this is not serving us, then how do we rework it, and incorporate it, and include it in a different way, so that it doesn't just go BAM, BAM, BAM and make us feel scared, immobile, and angry and onto ourselves too much.
ME: Yeah, I've been learning a lot in having guests on my podcast about how powerful our brains are when it comes to even chronic pain.
So there's absolutely mind, body, connection. And I'm just learning that more and more, almost every single day, it seems like. So that doesn't surprise me that it helped just because I'm just hearing so many other stories and learning so much more about how much our minds have to do with our physical pain.
DEVA JOY: Yes! At the same time as you're saying that I really want to emphasize because some people can hear that and then feel like failures and feel like, “I'm thinking this, I'm doing everything I can. What's wrong with me? I'm still having so much pain, and now I feel worse about myself.”
So I want to just say to release expectations. It's not about yeah, our minds can handle this, you know, and change it. It's just like, okay, let me learn how to live in the most gentle and loving way with myself, with the pain—so if we can just soften into it just a little bit. If we could just take a little bit deeper breath into our lungs. If we could just be a little bit more tender in our thoughts to our self. If we can notice the present moment in some way just a little bit more.
Those are our successes. No, it doesn't have to be like, yeah, I overrode the pain and I've got this.
I just wanted to really say that cause I know with my clients they could take it very hard that they're not able to change something.
ME: Yeah. And I'm not to the point yet where I can change things. But I do have the belief that that it could be possible, absolutely. So, it's something I'm working on just because I'm just learning so much more about how powerful our minds are.
And I'm still going to have degeneration. I'm still going to have inflammation. And that that might not change.
But there are things, I think, that I can improve, even if it doesn't fully go away.
And I'm not expecting my pain to ever go away.
But there's a chance. It might. I've heard stories.
I've had a lady on [my podcast] who cured 12 years of back pain with mind-body connection work and things like that.
DEVA JOY: Absolutely.
ME: So it's amazing.
DEVA JOY: Well, I love that—that you know you're in this process, and it is a super powerful process, and it's just the truth that our minds and bodies and hearts and souls are all connected in there—it’s one system—and that it's all part of learning how to deepen into love, I believe.
You know, and to not beat ourselves up for what's happening. But to rather learn how to be the best ally. And I myself, I teach yoga today. I love movement. I have deformities. I have them in all sorts of extremities. And I used to feel shame around all that, and shame around the medicines I have to take, especially as a kid.
But I really know that as we just grow into noticing what is working, what is beautiful in our lives, and then this pain is still here; it doesn't have to define us.
ME: When I had to stop working back in 2017 because of my pain, I spent 2 years in a really deep depression. I felt like my pain was my identity. It was in complete control of my life (I thought), and I was pretty much in bed for 2 years.
I mean, I got up to do the basics. You know, feed my daughter because I had to. But other than that, I was just in bed.
And the two things that got me out of it were 1.) intentional daily gratitude—so every day whether I wanted to or not, focusing on what I was grateful for. Three things every single day. And even being grateful that I could still walk, even though it would cause me intense pain to walk, kind of like you were talking about earlier.
And the other thing was just believing that God could take my life and make something beautiful out of it. And that's when I started finding joy in helping other people with chronic pain and with depression and anxiety and trauma, and connecting with them, and encouraging them. And I’m hoping that that's what this podcast will do, including this episode.
And I love that you named your RA. My daughter and I both have anxiety, and we've named our amygdala.
So mine's named Bob. Hers is named Chip. And so whenever her anxiety is out of control, she's allowed to say, “Shut up, Chip!” She's not allowed to say “shut up” ever, except for when her anxiety is out of control.
But I was talking to a doctor on this podcast a few episodes ago, and she said that's actually something that they teach in her field—is to name that illness or that condition, because it helps separate it from your identity, right?
DEVA JOY: Right. Yeah. And it makes the relationship. You know, once you name something, you have a relationship with it.
And then you want to get to know it as best you can, and you want to know how you have an exchange.
ME: Right, so it becomes another entity, and not your pain isn't you.
DEVA JOY: Exactly.
ME: It's not who you are, because I felt that way for 2 years—that my pain was who I was, but after I came out of that, I realized I'm still all these other wonderful things.
I'm still a kind person, an empathetic person, a loving person, and a good mother, despite my two years of depression, and that's really helped to reclaim my identity.
DEVA JOY: Yes, and I think that phase that you went through—the depression—it was necessary. Because when we have an illness, we have disease, we have pain, we have grief. We are going to continue to go through a grieving process. As you say, you continue with deterioration. So there’s different layers of grief.
So I think there's that really all encompassing grief.
And then we start to move through it and out of it as you did, and I wanted to emphasize something in your story which was really beautiful when you said you believed that God would make something beautiful of your life.
So believing in something good. And then I felt like you, in a sense, asked for how to bring that into beauty, and then you were led to creating this podcast, so I think just knowing that we don't have to have the answers, we could just ask. Ask, “How can I see good in this?” And “What can I receive from this?”
And about the gratitude, whether you felt like it or not.
I see this with my clients, too. We make gratitude journals. But I want to share that I really believe that if we just focus on receiving—receiving our breath, receiving the clothes on our body, receiving everything—when we receive, gratitude is a natural byproduct. It's just there then, and we don't have to force it. So there's something about receiving.
What Do You Tell Your Clients When They're First Diagnosed with Chronic Illness?
Sort of what we've been talking about, which is that to allow this grief. There is truly a shift of identity. Kind of like when I was diagnosed with this. I was just this normal kid, playing sports and this and that, and then I couldn't walk. So that loss— loss of how my life, how I knew it and myself as how I knew myself to operate that grief has to happen, so I do support my clients through the grieving which is at some level, just cyclical. We'll go through it and come out of it and go through and come out.
And then to really learn. Let's use that frontal lobe and learn everything we can about this pain, this illness.
And let's learn everything we can about treatments—medical and holistic. And let's learn everything about how to be good to ourselves and how to take care of ourselves in the very best way possible, and how to talk to ourselves, because sometimes, as you said, you were down on yourself. That happens so much when people have illness—they think that's all they are, and then they go into just fear. We go, and we go into just fear—like all the losses we're going to have, because we can't live out what we thought we would.
So caring for ourselves—all of that this stuff that we’ve talked about and making this relationship.
What are we learning? So in my book, The Toolbox of Hope: For When Your Body Doesn’t Feel Good, it goes into that. How to make a relationship with your pain or illness, and then how to gather information.
And then all these different ways of how to deal with your feelings.
And so my clients use my book, whether they're children or adults. So for younger children, there's a whole section for parents on how to help your child with the book.
But then my adult clients as well use it.
So it goes through that range, and after we go through really learning about feelings, we learn how to speak to it, how to receive communication from it, and to stay in that continual relationship, and that we keep refining it, and what makes him worse, what eases it. So we keep learning information. And then how we hold it.
The book goes into...it's called the bigger picture. What do we learn from it? How do we think of it? What negative beliefs are there about ourselves because we have it?
So it leads you through an interactive process on all of these issues as well as making friends with your medicine.
A lot of people hate taking medicine. When they see the medicine, they feel like it’s a reminder that they’re sick and different. And so how to make friends with it. It’s really like a Native American medicine bag, and how to make friends with it.
How to take it into your body with healing.
And so there's an exercise of actually putting your medicines in a Native American medicine bag and blessing it, and seeing it as holy and sacred.
So there's all these subtle things of how I work with my clients and myself when illness happens.
Do You Focus a Lot on Self-Love? Why is That Important?
DEVA JOY: So the first thing I want to say about self-love is—because it sounds like for so many people, I don't know how to do that. My mind is constantly telling me negative stuff. So it's not necessarily a feeling.
It is really a commitment and a conviction to bring the best of your heart to yourself, and to learn how to grow into doing this.
And it's self-acceptance, self-forgiveness, self-compassion, tenderness—everything that we would want to receive from a loving parent.
How do we bring that to ourselves? How do we bring that to our bodies and our inner kids who are struggling with our situations?
Self-love often sounds unattainable to some people.
So if we break it down to giving permission to how we feel as we feel it, lengthening your breath and taking it a little bit more prana, a little bit more life energy, that's self-loving.
Allowing yourself to notice some beauty around you. That's self-loving.
So as we start to do these little things, we bring more love into ourselves.
And it's just that paying attention. So self-love doesn't have to be this lofty thing.
It could be just very practical—paying attention, bringing your hand to a place on your body that hurts and allow the breath to become just a little bit deeper as you do that.
This is all self-love.
So it's really like, "Am I going to be an ally or a foe to myself?" And it's easy to fall into the foe. Of course, we all think, “Well, I wouldn't be a foe. I should be an ally.”
But you know the mind often doesn't cooperate that way for many people.
So, being patient with yourself, and knowing that you are bigger than your mind, just like we're not our illness.
We're also not our minds, and we can learn to train our minds to be self-loving, to show us that we can train—that we're going to have the thoughts we have, but we do have a choice to fuel them or not.
Let's say someone thinks, “Something's wrong with me.” You know, we have a choice. Do you keep going with that, or do we reroute it?
The same point, I do want to say that people with imbalances, with their biochemistry, don't necessarily have that ability to reroute, and that just means a little bit more help is needed because ultimately we can't be a victim to our minds.
We learn to train. We learn to tame the mind.
ME: Right. I think that's my favorite explanation of self-love that I've ever heard, because self-love…they do make it sound like a feeling, and if you're not feeling it, there's something wrong with you. You're doing something wrong.
Yet you make it sound so attainable, and I think you're absolutely right that it's just small steps, small actions that we take to help our self, because every thought we have— everything we do—can either push us towards health and vitality and happiness or take us the opposite direction. Everything we put into our bodies can do that, too. It can either harm us or hurt us, or will possibly be neutral.
But you know, our thoughts definitely are not usually neutral and I'm one of those people with the chemical imbalance. I have to take anti-depressants. I've been on them for more than 20 years, and if I don't take them for 2 days, it's a big deal. I am not myself. I can't stop crying. Everything's upsetting. It's not the same. I can't function. So I absolutely believe that that you're right there.
And I used to feel ashamed that I take antidepressants, because that's the stigma that I grew up with in my household, in my family, that if you have to be on these kinds of medications you're crazy. There's something wrong with you. But the older I've gotten and I don't know, maybe it comes with age, maybe it comes with understanding there's nothing wrong with me. I'm not a bad person. I'm not crazy. It's just something that I have to do to be the best version of myself that I can be, and that's how I try to look at my medications is: I take all of these medications—the pain medicines, the antidepressants, the whatever— to be the best version of myself I can be.
DEVA JOY: That is so beautifully and powerfully said, and I really want to acknowledge you, Lauren, for how far you've come to be able to talk about it on your podcast from that shame place.
And absolutely, I tell all my clients: an SSRI, an antidepressant. If you needed thyroid medicine, would you take thyroid medicine? It's exactly the same thing. And we need to see it as that. It's literally your essence. There's nothing wrong with you. It's just like, “Oh, your mind, your brain needs that.” Your thyroid needs that. If you wear glasses you need glasses. It's all the same.
How Has Living with a Chronic Illness Changed Your Perspective on Life?
I think that you could already hear it. Really, everything is different. That’s why I call it this very most intimate relationship that wish we have with our illness. Once we have that relationship, whether it's having more compassion for others, whether it's needing to pay attention to ourselves in a different way, like there are these changes, and then the world looks different.
I do believe that the doorway of compassion opens, so that when we see people struggling—whatever age and whatever color and wherever they are in the country and world—that you know suffering is suffering, and so once we have that intimate relationship with that then we know not just humanity, but all beings have suffering.
Every single creation, creature.
I think that has really been the big thing and has changed me since that happened when I was 14. So I felt that at 14. I felt like, whoa, everything's impermanent. My childhood as I knew it, just went away.
I felt so bad for my own parents, because I knew that their youngest was hurting, and has this chronic illness.
I just felt so bad for them. So as a child, I carried that and everything. So the sweetest thing I say, like exchange for my brother, sister, or friend, or just some offering, it went in deeper. So I think this depth happens, and if we could call that perspective, I don't know, but a depth of deep feeling that we are all one.
Do You Have Any Advice for People Living with Chronic Pain?
You know, this question, I really pause on it because I think that we all have advice for each other. We're living in community with pain and illness.
So that's one thing is to remember that even though it might make you feel alone you’re not alone. We are really connected. And every being does know pain, so just know you have so much company.
And then we're bigger than that as well. So to remember that we're not our pain. We need to include it as part of our whole. But we're not to define ourselves by it. It's more to bring love to. It's more to surrender, to bring acceptance to, bring forgiveness to. So it's an opportunity to love more and that's what I want to share.
Also, about having illness, and I tried to describe this. I created a video that was based on a performance art piece that I did for a community.
So we were asked to share and do a performance art piece on what's the most vulnerable and victorious in our lives? So it's called “Very Vulnerable, Victorious.”
So, of course, living with Arthur is that.
I started off in the darkness, with flashlights on my different extremities that show deformity. And I spoke as this child having it, and then I went further from there into what it was like to actually make friends with it.
And then the lights came on, and it was like, this is here for you to see.
I come from shame and darkness and depression from this into the light, and into sharing, and for us to see each other. And from there, in this performance art piece, each person came and took my hands which show a lot of deformity, and they looked at it with loving gaze and they kissed my hands, each person. So there were like 30 people in this piece.
And it was extremely transformative for myself as well as every single person, and that led to the birth of this video that I made called Living with Arthur.
And I try to communicate in that—my message. It's just there on YouTube. It is there to help us lift. So even though we might not be disabled, or we have pain, we can still lift our frequency.
We can still shine. So my theme is "F*&%ing shine anyway!"
Where Can We Find Your Workbook and Get More Information about What You Do?
It's all on my web page. So the video’s on my web page, as well as twenty-five 1-3 minute healing exercise energy medicine videos that I want to share with people.
And my books—they're on Amazon as well as you can find information about them on my website.
And my website is healingheartcommunications.com, or you could get to it through my name, Deva Joy: devajoy.net. Either one leads to the Healing Heart Communications website.
There’s a lot. I write also a lot of articles and blogs, and it's on that.
And some of it is about living with all this.
What about You?
Do you feel like your pain or illness is all you are?
Affirmation
Today I will remember...
to create a relationship with my pain, because it's not my identity.