Ep. 81: Health Anxiety w/ Amanda Griffith-Atkins, LMFT

 

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Summary

So many of us have experienced trauma related to our children’s health and safety. So, it’s no wonder that we get thrown into a frenzy and our adrenaline pumps anytime our child gets sick or seems off in some way. Our bodies anticipate danger and additional traumatic events even if we logically know they are safe, or we don’t have enough information to conclude anything yet, or that situations are different now.

In this episode, rare mom and LMFT Amanda Griffith-Atkins and I discuss ways that we have experienced health anxiety as well as what is happening on a psychological level. We also talk about the similar stress-response we experience in anticipation for specialist appointments. She shares ways we can cope with these trauma responses and teaches us to give ourselves generous helpings of self-compassion.

Episode Transcript

Amanda Griffith-Atkins  0:00 

We're allowed to say it isn't fair that, first and foremost, my kid has to go through it, but also that I have to go through this. I don't want to watch my kids suffer, I don't want to watch three grown-ups have to pin him down to the table and take blood. That's a terrible experience for all of us involved. And, as a parent, you're allowed to feel that, own that, and take care of yourself afterwards.

 

Madeline Cheney  0:25 

Hey, you're listening to The Rare Life. I'm your host, Madeline Cheney, and I am beyond excited to give you episode 81 with licensed therapist and rare mama, Amanda Griffith-Atkins. It is all about health anxiety, what it is, and how we can cope. You guys, I didn't know that there is an actual term for this until I was scrolling through Amanda's awesome Instagram account and I saw a post all about health anxiety. She defined health anxiety as, quite simply, anxiety related to health and, more specifically in our cases, the health and safety of our medically complex children. I immediately knew that we needed to do a whole episode about this topic with Amanda because it's such a relevant topic to almost every single one of us, and it's something that really isn't talked about. In this episode, we discuss how health anxiety can take over when we notice the slightest sign of illness in our child, the anxiety we might feel about upcoming appointments with specific doctors or specialists, and even anxiety that we feel just entering the hospital or the doctor's offices. So it's really just things that can trigger us back to past trauma that we've experienced with our children. It's a really tough part of life for most of us, and you don't have to feel alone in it. In the last half of the episode, we discuss some of the less-than-healthy coping mechanisms that many of us employ and some ideas for healthier alternatives. As a side note, I will say that we don't specifically address the pandemic but we both acknowledge that as a huge source of health anxiety to us, and most of the world as well. Amanda is awesome and I'm excited to introduce her to you but before I do, I want to tell you about an awesome company and our sponsor for this episode, Aeroflow Urology. In a nutshell, they make it super convenient and inexpensive to receive bladder-control supplies for your child. They are shipped directly to your door each month at no cost to you through your Medicaid benefits and a prescription from your child's doctor. They can save you so much money, and it really doesn't get any easier. So check out the link in the show notes to learn more about their products and services and to see if it is something that you can take advantage of. And a huge thank you to them for generously sponsoring this episode. Alright, let me tell you more about Amanda. Amanda Griffith-Atkins is a licensed and practicing therapist in Chicago. Her family consists of her husband Will and her three boys; Asher is 12 and has Prader-Willi syndrome, Silas is nine, and Jasper is five. She has an incredible Instagram account that I will link in the show notes because you need to follow her if you do not. Amanda is one of my favorite people that I've ever interviewed and we hit it off immediately. I love this episode and I really hope that you do too. Amanda is a lover of dogs and going to concerts. All right, let's dive in. Hi Amanda, welcome to this show.

 

Amanda Griffith-Atkins  4:21 

Hello!

 

Madeline Cheney  4:23 

I'm really excited to chat today about health anxiety. I think it is so relevant to so many of us, and probably all of us in different versions. Some of us are looking at this as, because my child has had previous medical scares or traumas, we start to create illogical scenarios from the smallest details. For example, it's not very likely that he'd have to be hospitalized with a cold, but your brain still goes there and goes into this panic mode. Then there's the other camp of parents with kids that have these medical issues that really could hospitalized them with any kind of sickness, but I do think that this is relevant for all of us because of the way that we still go back there, even if we're not actually still there. So I'm really excited to dig into this. I would love for you to start out by sharing your definition of health anxiety and how that has affected you personally.

 

Amanda Griffith-Atkins  5:26 

I think health anxiety could be defined as any type of nervous or anxious reaction that comes as a result of health. It can be related to our health, it can be related to our children's health, or our partner's health. We've all been guilty of googling symptoms, like if you have a stomach ache and you Google, "What does it mean when I have a stomachache?" Suddenly this stomachache has turned into stomach cancer. So we could call it being a hypochondriac, or, in its lesser form, just health anxiety. And particularly when you have a child that has had a lot of medical needs or unexpected medical issues, it's so easy for our brain to be 10 steps ahead. For example, and I've written about this on my Instagram a lot, when my son, Asher, he has Prader-Willi syndrome, when he was one, I was at my parents' house in Michigan and throughout the day, I thought he was tired and I thought he kept falling asleep. What was really happening, I found out later, was that he was having drop spells, which is basically seizure activity. As the day went on, he started getting more and more sleepy. He was hooked up to his feeding machine while my mom was holding him and he started convulsing. I had no idea what was going on, I'd never seen a seizure, I had never seen him had one, I never even realized that he could have one. This was totally new and unexpected to me. I said, "Mom, what's happening?" And she was like, "I think he's having a seizure." And I freaked out, I didn't know if he was going to die and what this meant, I had no idea. So we call 911, I was in my tiny hometown in Michigan, and an ambulance came. They took him to the tiny local hospital where I, actually I always make a joke about this, but I literally saw the doctor go and search on his computer for Prader-Willi syndrome. And I was like, "Oh my gosh, this is not a good sign." Long story short, the seizure was provoked by a virus, and it was a febrile seizure. So his fever had reached a certain point and he went on to have quite a few more seizures as well as to be hospitalized for a week, two years later. So, in hindsight, I'm aware that the seizure itself wasn't dangerous, it was his body's response to his fever. It was actually something that his body needed to do to reset. I'm thinking particularly, if there's anybody listening who has a child with epilepsy, I'm sure that they're listening to this story and being like, "Okay, that is one type of seizure." But I'm also aware that there's other types of seizures that are way scarier, way more serious, and more frequent. So I very quickly developed all this anxiety around seizures. And, as the years went on, up until he was about three or four, he continued to have seizures every year. Basically, when he had a virus, his threshold for seizures went down and he was really prone to having a seizure. Whether he had a fever or not, we were able to start to see when he would probably have one. I developed this like slightly irrational fear around sickness, and then hospitalizations. So anytime that any of my kids got sick, when any of my kids get fevers, I am so quick to give Motrin. If they're fevers like 99.5, I will always give Motrin because in the back of my head, I still to this day, have irrational fear of, "When my kids get sick, they're going to have a seizure, and it has to be hospitalized." Even as I'm saying it, I know that this is irrational but that moment of trauma where I saw him having a seizure and my whole conception of health and what bad things can happen shifted, the trauma was set in and my brain is now kind of forever wired that way.

 

Madeline Cheney  9:28 

Yeah. That's so, so relatable. When my son was coming home from the NICU, we were in the hall walking out and the nurse stopped us and was like, "Oh, by the way, because of his medical complexities, he's higher risk of dying of SIDS. So, there's that." This happened as we were walking out and I was like, "Okay..?!" I think, on top of everything else, I guess that is just representative of all the medical things that make a parent have to be hypervigilant, right? You know that they have these medical complexities that really could harm them immensely or eventually take their life. I think that kind of hypes us up into this mama bear against something that we can't necessarily protect them against. I think that's probably why it feels so out of control and so scary because it's like, my son's body feels almost like the enemy because it could take him down. How do you fight against something like that and keep them safe and healthy? And a lot of times it does work out, sometimes it doesn't, and, I don't know, I think we have every single right to be riddled with anxiety and to be at a loss of how to work through that and to have it crop up all the time. And, like you said, irrationally, but it's still there, it's becomes a permanent part of us, I think.

 

Amanda Griffith-Atkins  11:04 

Absolutely. That's the complexity with this for parents of kids with disabilities, right? It really is not irrational. I mean, to leave the hospital and have a nurse pull you aside and say, "Oh, by the way..." like, what are we supposed to do with that? I think that's where, for me, it becomes this sort of mind game of logic versus emotion. And that game doesn't always work for me because I try and talk myself down, I try to rationalize it and see that he's fine. Kids get sick and this is normal. But for so many of us, when our kids get sick, it's not like your typically developing kid getting sick, there are more risks involved. I think that's what makes this topic so complicated, is that there is no clear safety. You used the word hypervigilant, which I think was such a good word to use because we do have to be hypervigilant, we absolutely do, about 100% of the time. So how can we tease out our anxiety and grasp logic because we do have to be hypervigilant. So I think it's a really hard dilemma that we're in and it makes sense that we're walking around feeling health anxiety all the time because so much of us are dealing with really scary, complicated things.

 

Madeline Cheney  12:18 

Yeah. I really feel for us. Those of us who are still in the thick of that, and might always be. Our children's health is very precarious and very high risk, and they're even beating the odds because they're alive today. And I also feel for those of us where it's not necessarily a real threat anymore. Something could happen with his health and it could be a big deal because he's still not as healthy as like his sister, but it still lives. Like you said, it became a permanent part of you during that trauma. And it kind of rewired how you feel about fevers because you start to perceive them as more dangerous, more scary.

 

Amanda Griffith-Atkins  13:13 

Yeah, and like I was saying earlier, so much of it revolves around things that for other people might be really harmless, like a fever. My friends with kids or my family members with kids, when their kids get fevers, it's no big deal. I've observed the way that they react to their kids getting fevers, they're so calm about it. But for me, to this day, it's this huge source of anxiety. I've really had to try and access my logical brain and coping skills to remind myself that just because he gets a fever, it does does not automatically mean that he's going to end up super sick.

 

Madeline Cheney  13:55 

Yeah, and that can be such a work in progress, to kind of unlearn what you've learned.

 

Amanda Griffith-Atkins  14:02 

Exactly. And also reminding myself that my feelings are valid, that my experience is valid, and kind of comforting myself that it's okay feel this way. It's okay to have anxiety about this. I've been through trauma around this, and I'm sure many of your listeners have as well, particularly with seizures, or any other kind of medical issue. We have to balance accessing logic and trying to talk ourselves down, while also reminding ourselves that it's perfectly understandable why we feel the way that we do. We've all been through a lot.

 

Madeline Cheney  14:37 

Yeah, yeah. And to be very compassionate and gentle with yourself in that, and to find that balance.

 

Amanda Griffith-Atkins  14:44 

Yes, absolutely.

 

Madeline Cheney  14:47 

So we've talked a lot about hospitalizations and this, sort of, fear of death, which is very heavy and probably the biggest one that gets us. I also was thinking that health anxiety is a very real thing with appointments too. For me, there are definitely specialists that get my heart rate going, like neurosurgeons. Anyone who's followed our story long enough knows that there's a lot of trauma that's happened regarding neurosurgery appointments, specifically. Finding out this terrible news that is super scary, super dangerous, and high stress.  So now every time I go in there and schedule appointments, I'm like, "Oh my gosh, it's neurosurgery. What is going to happen? What am I going to find out?" I think that can really do a work on your emotional health, too.

 

Amanda Griffith-Atkins  15:44 

Oh yeah, definitely. Like, even for some people, I know it's like this for me, but just simply being back in the hospital, and that's where most of our doctor's appointments are. Or something I've posted about before, something as simple as, every time I wash my hands in the hospital, all that NICU anxiety comes flooding back because it's the same soap that they used in the NICU. We don't often think about smell as a trauma trigger but for me, I've literally thought about bringing my own Bath & Body Works soap when I go to the hospital because the hospital soap just truly sends me into a tizzy of anxiety. It reminds me of everyday, having to wash up when my baby was in the NICU, so I'm scrubbing, scrubbing, scrubbing, and that soap is powerful. So I think you're absolutely right in that these specialist appointments bring up anxiety, whether it's about what news are we going to get, and for some parents, like for me, when we take my son to a psychiatrist appointment, I'm always worried if I'll have the answers that she wants. It starts to turn into this thing where I start to question if I'm a good mom, have I done all the things that I needed to do? Like, let's say you're going to an ophthalmologist, "Are we patching the eye as times as we should be doing? Is he wearing his glasses as much as he should?" It becomes this huge source of anxiety of like, "Am I good enough parent? Are we going to get bad news?" And basically figuring out how to prepare myself for the unexpected because, from all these appointments, there's a good chance that we can get news that we don't want to get.

 

Madeline Cheney  17:22 

And it's illogical to be up terrified, I guess, and to go in this like, total panic mode, but at the same time, it totally makes sense. Like, yeah, it is a wild bag. We don't know what we're gonna find out. And sometimes, like you were talking about, questioning, "Am I good mom? Am I doing what they told me?" For me, it's sometimes like, "I haven't been doing what they told me to, and I know I haven't." So like, I'm going to the teacher and I'm like, "I didn't do my homework." Like, tomorrow we have an appointment with Kimball's ophthalmologist to check on the patching progress, and I've patched him like three times, I have not been patching. So I think I'll just cancel it because why go in just to tell her I didn't do it. So there's a lot of emotion that goes into it and a lot of insecurities, like you said, "Am I good mom?/I am a bad mom.Do I have what it takes to problem solve some more? Like, we don't really know why he's losing weight, etc., or am I going to get this horrendous news that changes my life throwing it upside down and rattling me with fear." It's just so it's so loaded.

 

Amanda Griffith-Atkins  18:47 

Yeah, and I think another thing is that a lot of us have bad experiences with certain tests or procedures that have had to be done to our kids. I have really vivid memories of when we were at an endocrinologist appointment, they needed to run labs when Asher was a baby, and three nurses and a doctor had to hold him down to take his blood. And I was sitting in the room and just sweating, my heart rate was probably 130 beats per minute, and I'm sitting there watching my baby being pinned down so that they can stick a needle in him and get his blood. That in and of itself is so traumatic for any parent. Finally the doctor was like, "Mom, can you leave? You need to leave because we need to do this." I mean, what a horrible feeling. For the next endocrinologist appointment, I made my husband take him because I was like, "I cannot go through this again. This is too much for me to watch him suffer and not be able to do anything about it." There's things like that too, so it's not only the anxiety of getting bad news and is this going to reflect poorly on my parenting, but also having to watch our child go through tests and procedures that are really upsetting to have to watch.

 

Madeline Cheney  20:06 

Oh my gosh, yeah. Those blood draws and IVs, like, you just feel for these kids. I think that's one thing that usually comes up for me, really with any of this kind of stuff, especially with things that are invasive and painful, like blood draws. "He doesn't deserve to go through this, none of his peers are going through this, this is just not fair." I think the 'not fair alarm' goes off a lot too when those kinds of things are happening. And, you know, it's also not fair to us, as parents, either. It sucks.

 

Amanda Griffith-Atkins  20:43 

Right, that's right. And I'm so glad you said that because that's the whole point of my Instagram platform. We're allowed to say it isn't fair that, first and foremost, my kid has to go through it, but also that I have to go through this. I don't want to watch my kids suffer, I don't want to watch three grown-ups have to pin him down to the table and take blood. That's a terrible experience for all of us involved. And, as a parent, you're allowed to feel that, own that, and take care of yourself afterwards because that's significant trauma, to have to watch that. Most parents, certainly of typically developing kids, they don't have to deal with that most of the time. So there is the sense of it feeling really unfair.

 

Madeline Cheney  21:26 

Yeah, yeah. And thinking about the comparison of how his cousin doesn't have to go through this but he does. I think that also goes along with the anxiety itself, and we can feel pretty lonely in these responses we have to upcoming appointments, or surgeries, or them being sick, where maybe our peers or fellow parents are like, "Dude, calm down." We can visibly see how, for my sister, when her kids get sick, she just goes with it, she's not upset at all. And here I am riddled with fear and anxiety over a little cough because I don't know what's gonna happen. And that can feel very isolating because we're comparing ourselves to others and that's one thing I hope, with this episode in particular, is just to shine light on it and for everyone to know that they're not alone. There's a lot of us in this.

 

Amanda Griffith-Atkins  22:31 

Yeah, I posted something on my Instagram about this and there were some comments that were like, "Oh, my gosh, yes. I didn't know there was a name for this but I have health anxiety." It was sort of this 'Aha!' moment for them to be like, "Oh, yeah, that's what's happening." When we can identify that, then we can start to have compassion for ourselves and acknowledge that there's been some significant trauma here, and it's okay to feel this way. That's just helpful information because the next time you have an appointment, you start to feel that familiar feeling of anxiety, you can identify it and be like, "Okay, that's what's happening. There's a reason I feel so dysregulated right now, there's a reason I want to go chug a bottle of wine or escape or go watch my favorite TV show or go lay in bed. Like, oh, that's right. That's what's happening right now."

 

Madeline Cheney  23:18 

Yeah, yes. And I think that can actually take a lot of its power away. You can be like, "Oh, I see you. I see you anxiety. Like, I know why this is here."

 

Amanda Griffith-Atkins  23:29 

Yes. And two things, and I say both of these things all the time to clients but the first is that, and this is basically what you're saying, that feelings are not facts. Feelings are not facts, just because we feel it doesn't mean that it's actually going to happen. And then the other thing that I like to explain a lot to clients that I think is so helpful with any type of anxiety, is identifying the difference between, and think of a triangle in your head, one point, thought, actions, feelings. Those are three separate things, right? So just because I'm feeling anxiety and I'm thinking that my son is going to have to be hospitalized, I don't have to act on that. I don't have to take an action and do something to respond to that. So it's helpful to identify the difference between a thought, action, and feeling because those three things all contribute to our behavior and our anxiety. Just because we think it doesn't mean that it's real, and our feelings can be separate from our actions.

 

Madeline Cheney  24:31 

So, as a therapist, do you think that it's healthy to act on that? Or do you think it's better to keep it in your thoughts?

 

Amanda Griffith-Atkins  24:38 

I think it depends on what your action is going to be. If you have a go-to list of coping skills that are helpful for dealing with your anxiety, then you should act on it. For example, let's say Kimball gets the sniffles and in your mind, you're assessing, "Okay, yes, he's been hospitalized before, I do have this feeling that he could be hospitalized, I have this thought that he could be hospitalized, what do I need to do to respond to this feeling? Well, I'll promise myself that I'm really going to stay on top of this cold, I'm going to take his temperature, I'm going to be watching for if he's sleeping more and how he's breathing, etc." So, is that an unhelpful action or do you know that those actions are actually going to help. Like, if you're hypervigilant, is that going to actually send you more into your stress response cycle. So maybe you say, "You know what, I'm actually going to ask my husband to take his temperature because he can handle this anxiety a little bit more than I can." Or, "I'm actually going to go for a run right now because I just need to reset a little bit and get back to a little bit more of a healthy mindset. Or maybe you say, "You know what, tonight, no matter what, I'm going to hang out with one of my friends, I'm gonna go out to dinner with one of my friends and just reset a little bit." I would ask, what is the action? What is the action and what is most helpful for you? So, to go back to my example of the seizures, when I was in a bad place, when I was really stressed about Asher having seizures when he was sick, I would take his temperature all the time. This action was not helpful to him, though. This poor kid is getting a thermometer stuck in his ear every, like, five minutes. Like, that's not helpful. And our temperatures do go up and down, so that was not helpful to my anxiety either. I definitely needed a different actions. I think you have to gauge like, what is the response to my thoughts and my feelings? Is this helping me create stability and calmness?

 

Madeline Cheney  26:42 

Yeah, so one example I just thought of when you talked about sticking that thermometer in his ear, I felt so relieved the minute we left the NICU because you just sit there glued to these monitors and worry about things like if it's normal for their heart rate to go up, and just these normal fluctuations or emergency situations too because those also happen, just being so aware of all the details can absolutely, and probably almost always, adds to our anxiety and kind of hypes us up more. Like you said, it feeds to the stress response that you had. So I was very happy to be rid of those monitors. I know a lot of parents will be sent home with monitors, and they're needed, but I think that all of those parents could attest that it heightens that anxiety.

 

Amanda Griffith-Atkins  27:34 

Yeah. And then eventually, the monitors get taken away, and it's hard to reconnect with our intuition as a parent because we've been so reliant on this number, you know what I mean? Also, I think that's another important thing to bring up to is just like, as a mother, as a parent, we do know our kids well and I think it's important in all of this to remind us that we have to pay attention to our gut, we know when something's off with our kids, and we have to pay attention to that. So that gets complicated because I think that intuition gets overshadowed by our anxiety and we lose touch with our inner voice that says things like, “Something seems a little off today or something doesn't seem quite right." So I think that's an important part of really understanding your anxiety so that you can connect with your inner voice as well.

 

Madeline Cheney  28:31 

Oh my gosh, yes. I'm just picturing maybe a healthy response to Kimball having the sniffles would be noticing these feelings I'm having in assuming we'll need to go to the hospital because I don't know anything yet. So I'm going to take care of myself and go for a run or do whatever you have in your arsenal of coping mechanisms that are healthy, and I can trust myself to take action where there needs to be action. I am capable of taking care of him and doing everything in my control to take care of him. And I know that taking his temperature every five minutes doesn't necessarily make him safer, but it makes me riddled with anxiety. And so like really talking yourself through this process and trying to have that trust in your instincts and your capacity to take care of them and take action where there needs to be. Which, you know, I acknowledge fully is so easy for us to sit here and talk about, but to actually do it, it's hard. It's really hard.

 

Amanda Griffith-Atkins  29:35 

It is hard but you're so right and I actually love that so much because it feels empowering, right? You get this clarity of, "Wait, I am his parent, I do know him," and the fact that you even picked up on the fact that he had the sniffles. You're like, "I'm on it. I get it. I see it. This is not going to spiral out of control. And if it does, I know where the hospital is, and I can clear my schedule in a moment's notice because he is my priority." So we need to accept the unknown and remind ourselves that we're capable. I can handle this, I see what's going on and I'm on top of it. So that's all I can do right now. I think that's actually incredibly empowering. Also reminding yourself that, if it gets scary, I'm going to get to the hospital ASAP, I'm not going to drag my feet, like, that feels empowering too.

 

Madeline Cheney  30:30 

Yeah, and even reminding yourself of past traumatic events, in a careful way so you're not going back there, but to be like, "Okay, when he was having seizure activity, triggered by a fever, I went to the hospital, we were able to find the care that he needed, I responded in a way that I needed to and I can trust myself to do the same thing again, and probably in an even more efficient way because I've been there, I know what I'm doing. I'm a medical mom." You can really hype yourself up with that.

 

Amanda Griffith-Atkins  31:02 

I love that. With Asher, when he was a little guy and he was having these seizures, they gave me a prescription of Klonopin for him. They were basically like, "If he's sick, you can give him a Klonopin because that will slow down his seizure activity." So I gave myself permission to, if he was sick and if he had a cold, I would give him a Klonopin because the neurologist said that it was okay and it brought me peace of mind. And I didn't need to do that for that long, that was the interesting thing about it. Like, just knowing that I had that Klonopin prescription for him should he need it, was something that really brought down my anxiety. I know that that was a luxury that I had, that there was a medication that his seizures responded to but I just want to remind people that if there is a line of protection and medication, or something that they can just have on hand, for whatever their child's issue is, then go for it. Do that, fill the prescription, have it there, give it if you need it. In other words, treat the fever, like, "My kid has a fever, they will get Motrin."

 

Madeline Cheney  32:10 

Yeah. And you're honoring your experience, you're like, "Yeah, my experience is different than my sister's, and so I treat it differently." And I think it could be a really awesome conversation to have with doctors, if you're like, "I want something like that. I want something like a medication I know I could have that would bring me more peace of mind, even if I'm not using it consistently." And you know, maybe if your fear is hospitalizations, you have a conversation. What do you think we could do in the future that could help him not need hospitalization, or delay it, etc.? Or you could pinpoint like, "Hey, I feel a lot of anxiety about appointments." And then to be like, "What can I do to help myself feel more prepared, or to feel less anxious about it?" Maybe it's writing down thorough notes before you go in so you have all the questions ready to go and you don't forget them, and you're taking notes as they're talking. Or maybe it's planning a fun outing on your way home from the hospital. Making a game plan, I think can, like you said, take a lot of anxiety out of it.

 

Amanda Griffith-Atkins  33:15 

Yep. I think that's such a good point, to talk to the doctor about it. Or maybe you're so stressed about appointments that you need something like a Xanax before you go to an appointment, what are ways that you can care for yourself. I think so often we try to ignore our anxiety and just shove it down but something that's actually helpful is owning it and responding to it. Exactly like you said earlier, like, "Oh, I see you, I see that anxiety response. There it is. And I'm going to give myself space to respond to it in a way that's compassionate because it doesn't have to be the elephant in the room. I don't have to feel shame, that I'm totally spiraling about this appointment. I'm allowed to feel that way. It's completely reasonable that I'm feeling that way and I can respond to it in a way that's compassionate."

 

Madeline Cheney  34:01 

Yeah. It's interesting when we both asked our followers on Instagram about how they handle this stuff and how they cope with health anxiety, there were two different camps of people. One is like, "Oh, I don't handle it. I'm a wreck, I'm numbing out, I'm vomiting, I have hives, I'm self medicating." A lot of parents were saying that type of thing. Then there were the parents that were like, "Journaling, deep breathing and objectifying it a little bit more." I think we're all just trying to figure this out.

 

Amanda Griffith-Atkins  34:40 

Yeah, a lot of my Instagram followers responded similarly, lots of focusing on breathing, therapy, medications, spirituality and praying, and connecting to people who get it. Then, of course, I had the parents that are really struggling with this, and I have so much compassion for those people because I have been that person before, where my whole few days leading up to a specialist appointment, or the day of, is just complete trash because I'm so dysregulated by this appointment. So a lot of compassion for people like that.

 

Madeline Cheney  35:14 

Yeah, yeah. And I've really been like soul searching a little bit because I really relate with the numbing out. Like, I totally go there, and not just with health anxiety, but other kinds of anxiety or just feeling stressed or overwhelmed. I'm like, "I'm gonna go watch my Perry Mason TV show and I'm just gonna chill out." Like, it's also the same thing too.

 

Amanda Griffith-Atkins  35:32 

You know why it's the same thing, it's the same thing because it's predictable. I mean, there's been actual studies on that. For me, it's either Sex in the City or How to Lose a Guy in 10 days, those movies are my go-to's. It's because it's predictable, I know the story and there's nothing scary about it. We crave stability and predictability in times of anxiety because it feels good. So that totally makes sense.

 

Madeline Cheney  35:59 

Yeah. I think the times I'm most prone to go do that is actually when I am exhausted, I'm too tired to go take my bubble bath. Which is crazy, how can you be too tired for a bubble bath. I'm too tired to journal, I'm too tired to meditate. I don't even want to think about that, I don't want to deal with it. I'm getting in my bed and I'm watching TV shows. And I don't know that it's necessarily bad. I do think a lot of times I'm doing that, I need sleep, like, I'm exhausted, I should probably just go to bed early. That doesn't sound fun do I don't I don't normally do that but I think it's really hard to use these healthy coping skills when we're just tired. And a lot of us are, a lot of us are really tired and overwhelmed.

 

Amanda Griffith-Atkins  36:46 

Yeah. And I think you're right, it's not harmful in and of itself. We're absolutely allowed to go crawl in bed and watch our shows. It becomes harmful when you start isolating. I know for me, when I'm in a really rough spot, after my kids go to bed, I go to bed at eight and just hermit my life away, you know what I mean? And that's not really great, either, I should be interacting with my partner, I shouldn't isolate myself. Yes, there's a time and place for this, no doubt, but it becomes problematic when it's happening a lot. And even more so, this idea of numbing out or escaping becomes problematic when it becomes a drinking problem or something that's more damaging. I do think with like, 'mommy culture' in general, drinking, substance abuse, things like that. Yes, of course, there's a time and place for a glass of wine, whatever. But it really can become a dependent problem and that's for a whole different podcast but I am curious about not so helpful coping skills that we use to escape.

 

Madeline Cheney  37:56 

Yeah, I think it feels different. It might be a fine line but I do think that there are times when we feel chained to those numbing out rituals, like, "I have to go to have my drink," or all day I'm just thinking about, like, "I just want to crawl in bed and watch my TV show all night." Those kind of obsessive thoughts. Whereas, maybe if it's like, "I had a long day, I'm going to treat myself and I'm going to have a glass of wine, or I'm going to go watch a Perry Mason show because I deserve leisure." There's this balance for sure.

 

Amanda Griffith-Atkins  38:31 

That's right. Absolutely, yeah. I think that's something I would challenge anybody listening to identify for themselves. What are your go-to coping skills? Be honest. And is that something that you're okay with? And there's zero judgment, when we're looking at this, we have to look at this compassionately. If you're hearing me and thinking like, "Yeah, I'm drinking like six nights a week." Like, let's have compassion on that. It's something to work on, absolutely, but also, nobody's here to judge you. We all understand how it gets to that point, too. So I hope that that's something that people can take away. What are your coping skills, what are your go-to's, and are you okay with that? And how often are you engaging in these coping skills?

 

Madeline Cheney  39:15 

Yeah, yeah, I think that's a really, really good idea. I think it's easier to see how heavy or hard your life is by hearing other people talk about it and being like, "Oh, yeah, I relate with that, man that is intense." Like, "Wow, no wonder I feel like this. Yeah, it's really hard." And so I think that can bring a lot of that compassion to be like, "I can see why went to that." And I've been using those coping skills that are not as healthy, but I can see why I went there and I can see why I deserve maybe a tweak in that, or baby steps to improve to things that will really serve you. I think that's really the bottom line, it's things that will actually help your anxiety.

 

Amanda Griffith-Atkins  39:56 

Yeah, help your anxiety and also help your relationships, help you as a parent. At the end of the day, we do have to show up and be positive parents and be present. If we're in a relationship, we have to show up to our partner and to our friends and our family. So we don't want to just be shells of people because we have a child with a disability. That's not fair for us, it's not fair for anyone. I think there's so much benefit in zoning in on this because it helps us to lead fuller lives across the board, which having a child with a disability should not be a death sentence for a parent. I mean, I preach it all the time, it is so hard, and there are days where I feel like I can't do it but it was not the end of my life when I got his diagnosis. I still have an amazing life that I'm grateful for, and have a child with a disability, but it takes work. And, for many of us, this is the actual work, whether it's health anxiety or just feeling worn out from the demands of being a disability parent, this is our responsibility. To work on ourselves so that we can show up for other people, and so that we are living the life that we want to live.

 

Madeline Cheney  41:11 

Yeah, yeah. This anxiety, and just all the aspects of parenting a child with a disability, it doesn't have to take over your whole life. It might at the beginning, while you're adjusting, but there is a time when you can ease into it and figure out your own groove with this life that you have, this unique life. So I would love to, with the last few minutes we have, kind of delve in a little bit more to recommended healthy coping skills because I feel like we talked a lot about the unhealthy ones but what are some ideas that you do have or that our followers on Instagram recommended that you think are good ones to go to?

 

Amanda Griffith-Atkins  41:53 

Yeah, this is such a great question. I'm going to start by talking about the stress response cycle because that will segue into coping skills. So Amelia and Emily Nagoski are two authors that have written this book called Burnout, and the main focus of the book is that we all have a stress response and in order to recover from stress, there's an actual cycle, there's a beginning, a middle, and an end. You can plug this formula into your situation and think about it. A saying from the olden days went like this: A lion would be chasing you and you're like, "Oh no, a lion is chasing me, I'm going to run my heart out and get away from the lion and get back to my community, and then when I get to my community I'll take a deep breath, be with my people, and celebrate the fact that that lion didn't kill me. There's a beginning, when we're walking in the woods, then we see the lion, which is the middle, so we're running away from the lion, and that's the end. Finally, "I made it back to I made it back to my people and I'm okay." So, in other words, what causes stress is things that are out of our control. Makes sense, right? And the stress response cycle is a biological cycle that our body needs to go through in order to let go of the stress. So in modern day, our body doesn't know the difference between a lion and being stuck in traffic, our body doesn't know the difference because the reaction is the same. We're pumping cortisol through our system, our heart rate is high, our blood pressure is rising. Our body thinks that we're being chased by a lion but really, we're just sitting in traffic and we're feeling super stressed out. So modern day stressors are kind of confusing because we don't have the release that we had when we were running away from the lion. That was when our body needed to release all that stuff. So the three things that they suggest is moving, move your body, in other words, escape from the lion. So this can look like exercise, dancing, it can look like tightening your muscles really tight for 10 seconds and then releasing them, going for a walk. It can be anything that is, what I call, joyful movement. It doesn't have to be biking 10 miles, like, not everybody's into that. So maybe it just looks like tightening your muscles or turning on music and dancing, but it's just letting your heart rate get up and then letting it get back down, basically. The next thing that they suggest is a 20-second hug. It's what she calls an awkwardly long hug because it lets your body return to a state of safety. So you're in, let's say, your partner's arms, you're hugging your kid, your parent, etc. It gives your blood pressure a chance to calm back down. We want it back at base level. And the last thing she said, which you basically hit on, was a good night's sleep. So giving your body a chance to reset from the stress and get that anxiety out. So if you think of it from a biological perspective, for me, it was like, "Oh, yeah, of course. I'm feeling so amped up because my kid has a fever. And then I'm trying to go through my life and I didn't really try to do something with all that stress, the high heart rate, the blood pressure, the cortisol, the adrenaline that's pumping through my body. So I need to find a way to release it. As I mentioned, some of these things are a little more time consuming, if you're going to go out and run five miles, that's sort of an ordeal. But if you're going to go there and turn on a Beyonce song and start dancing in your living room, that's five minutes and then you go on with your day. So none of these things are going to solve our problems but they are going to get our body back to baseline, which, when we're feeling extreme anxiety, and in this case we're talking about health anxiety, that's what we need to get back to a helpful place so that our body can catch its breath and we can keep functioning as we need to function.

 

Madeline Cheney  46:04 

Oh my gosh, that makes so much sense. My mind kind of blown because I feel like I'm totally noticing when I have stressors, and not even just health anxiety because obviously this applies to all kinds of anxiety, but I'm like, I feel this aggression, I need to get out and I feel like I should go for a run but I'm like, "Oh, I don't have time for that. I'm just going to move on." So I guess I wasn't identifying what it was but it was my desire to flee the lion. And that makes so much sense because you can just like pound it out on the pavement and get it out. I love that you have so many alternatives too.

 

Amanda Griffith-Atkins  46:40 

Exactly! If you need to go run a mile, go do it. For some of us it's 12 minutes, for some of us it's 15 minutes, and for some of us it's 8 minutes. That is not a lot of time, give yourself permission to do what you need to do, like, cancel that next meeting, whatever you have to do, say "I am in a super stressful place, I need 15 minutes to get myself back to baseline." Another important thing to remember is that, and going back to my example of traffic, the more often that we are in these stressful situations, the quicker we are for those brain pathways to develop. So the quicker it is, our brain, our amygdala very quickly is like, "Oh, we're stressed. Time to pump out stress hormones." But the more often we do that, the more damaging it is because our brain is just like, "Oh, I'm stressed, I'm stressed, I'm stressed!" all the time, and that leads to chronic stress, which ultimately leads to burnout, that's the title of the book that I was mentioning. So yeah, that's what I'm saying. Even at times when we're not being chased by the lion, our body still thinks that we are because we're in this heightened state of stress all the time, which is even more a reason to complete the stress cycle because we got to get back to baseline, we got to be able to bring our heart rate down and calm down a bit.

 

Madeline Cheney  47:57 

Yeah. I think sometimes I'll go straight to the deep breathing stage, but really you should be physically working yourself up more and then going to the deep breathing, right?

 

Amanda Griffith-Atkins  48:08 

Exactly, exactly. I think that is the problem with deep breathing, in my opinion, is that like, my heart rate is not going to come down when I haven't done anything to release all this, do you see what I'm saying? It's like skipping a step, you're right.

 

Madeline Cheney  48:22 

That is so interesting. So in the case of the traffic, do they say that you just tighten your muscles because it's something you can do right then or do you just wait until you get back home?

 

Amanda Griffith-Atkins  48:31 

Totally, you could tighten your muscles in traffic. I personally hate that one because it doesn't feel good to me, it feels uncomfortable. I know some people love that because it feels so, like, rage-y. So, yeah you can do that when you're sitting in your car and I think this in tandem with self talk, being like, "It's okay, it's just traffic, nothing really matters, it's not that big of a deal." It's all of it, we have lots of tools. Also, I have to make a pitch for medication and therapy, obviously, but if you're at a point where you're at an eight, nine, or ten on the anxiety level most of the day for a long period of time, that's where maybe medication is a good option. And if you don't feel open to it, I would suggest connecting to a therapist to figure out why you don't feel open to it. Nobody's going to force you to take medication but just knowing that there might be an actual pill out there that could help bring you down to baseline so that when you do get anxious, you can utilize some of your coping skills.

 

Madeline Cheney  49:31 

Yeah, it's just another tool. It's just another tool you're adding in there. I know we talked about this previously, but how can people find a therapist that understands our way of life, that gets the whole parenting a child with a disability?

 

Amanda Griffith-Atkins  49:47 

Yeah, this is a good question. As a therapist and as a mom to a child with a disability, I totally understand the complexities of trying to find a therapist who gets it. I mean, I think any good therapist is going to be able to enter into our world and understand it but there is that extra layer of empathy when the therapist has either worked with other parents of kids with disability, or in some cases even has a child with a disability themselves. So I am in the process of creating a directory of therapists, and there's no certification or training or anything like that, it's more just therapists who are stating that they enjoy working with this population and they get it. So, the directory is very small right now but my goal is to get at least one provider in every state who take insurance or can offer a sliding scale because I think we need to be talking about our feelings as parents of kids with disabilities. And for many, many years, we have not had permission to do that because, for some reason, people say, if you're mad about parenting kid with a disability, it means you don't love your child. And I'm so over that, and feel so passionate about it that I'm like, I want parents of kids with disabilities to be able to find help as easy as possible because we don't need another thing standing in our way of getting support for ourselves because we spend so much of our energy getting support for our kids. Like I said, it's very much a work in progress, it's in the early stages, but it is listed on my website, so what I have is on there, and it's literally me on my computer just connecting to therapists across the country, and hopefully other countries at some point too, to just get people who know what they're doing when it comes to our population. So yeah, I feel really passionate about connecting parents to therapists because we need support.

 

Madeline Cheney  51:44 

Yeah, that's great. And I'll put a plug in too, if any of you listening are like, "I have a therapist, he/she is great with this." And their experience is that they've worked with you, send them Amanda's way or reach out.

 

Amanda Griffith-Atkins  51:59 

Yep, it's very easy to just pop it up on the website. This really is not about marketing, it's not about advertising, it really like, in my soul, is about connecting parents to people who get it and people who can help us become more healthy versions of ourselves.

 

Madeline Cheney  52:16 

Yes, yes. I've greatly benefited from my therapist. Therapy, I think, is a great, great tool to add to the arsenal of health anxiety tools. I'm so grateful for you, Amanda. Thank you so much for coming on and for chatting about this really important topic, and I hope that everyone feels more empowered, understood, and seen in this realm.

 

Amanda Griffith-Atkins  52:42 

Yes, thank you. This was so great. I think a lot of people are going to benefit from this conversation because it just feels like it's giving people permission to acknowledge what we're feeling and that it's not bad. We can approach this with compassion and empathy and, of course, we feel this way, but the amazing thing is that there is something that you can do about it. I think that feels so hopeful. We don't just have to sit and sadness and anxiety, we can remind ourselves that there are tools so that we can go on and our lives aren't doomed, not even a little bit. It's incredibly hopeful, and there's things that we can do to feel better. So, thank you for having me on and I love your podcast, and I'm so happy to be here.

 

Madeline Cheney  53:24 

Thank you. You can find links in the show notes for Amanda's and my Instagram accounts. You can also find links for our sponsors, Aeroflow Urology and Better Health, which is an organization that provides licensed therapy remotely. Also in the shownotes is a link to Amanda's website, where you can browse or add to her list of therapists that have some experience with our population. Join us next week as I chat with mom Kimberly Arnold about her experiences with her daughter Julia, who was born with a fractured rib and a broken arm due to a rare syndrome known as brittle bones disease. This is one of my favorite story episodes of all time, don't miss it. See you then.

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Ep. 90: Living with Sleep Deprivation w/ Jill Arneson Underslept https://d3ctxlq1ktw2nl.cloudfront.net/staging/2022-4-12/4d5d4527-3978-3e8d-d2a1-f3f7f9ce8d4b.mp3

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68: Dipping My Toes into Educational Advocacy

 

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