PODCAST INTRO: Hey, beautiful soul, and welcome to Dear Body, I'm Listening, the podcast for women living with chronic pain, mysterious symptoms and invisible illness. I am your host, Donna Piper, movement therapist, pilates instructor and chronic illness navigator. The space is for the ones who've tried everything, felt dismissed and are still searching for answers. If you've ever felt like your body's speaking a language no one else understands, you are not crazy, and you are not alone. Here we go beyond diagnosis and let you know what diagnosis you try to seek. We talk about swelling, fatigue, brain fog, body shame, nothing is off the table. We explore healing through somatic spirituality, movement and truth telling, because healing isn't linear, and either are we.
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Donna Piper: Hey, love, welcome back to Dear Body, I'm Listening. My name is Donna Piper.
Today, we're giving a side eye to the whole wellness industry. We're going to deal with love, but also with some receipts. And we're really talking about wellness culture here. The one that says, just do this thing for 15 minutes, add this super food, just detox and hack. Most of the time, we can't even get out of bed. Also pushing that green juice and other supplements, and things may not be the best for you. Because when you're navigating a complex diagnosis like lipedema, MCAS, hypermobility, the full spectrum of EDS to HSD, POTS and chronic fatigue, this wellness culture says, if you're not doing these things and not glowing, why you're getting up super early to get a certain amount of light in your eyes and etcetera, then maybe you're not trying hard enough, or you don't have the right routine, or X, Y, Z. And you know what? We're not doing that anymore because this wellness culture is not made for our bodies, our conditions and invisible chronic conditions.
So in today's episode, it's all about unlearning the BS, and to start to reclaim and understand real sustainable healing for our bodies. There's no tumor shot required, so let's dive in. So in today's Real Talk Recap, what am I going to get into? Well, let's just say wellness culture for me, and I think all of us really need a serious reality check. You know what I mean. The one that is really about buying the $14 green juice, or just do 10 minutes of X, Y, Z, or buy this new thing that's going to heal your conditions. I love influencers, and I love people making money, and I love every gadget made for healing. I kind of own most of them. But when you have a chronic condition that has multiple layers, and when your body responds to building muscles, digesting food, digesting things from your liver, how your body deals with storage of fat and disease, and if your how your brain works with your central nervous system, etcetera, etcetera, etcetera. All of these things are highly complex. If you have multiple, they're contradictory. And what is the solution for you, there's no one map. Do this, you'll get better.
Actually doing those wellness culture things for me made me feel bad, but it didn't work. So then it made me also feel like another thing that doesn't work for me. I'm so bummed out. It's added to the frustration and pressure I was putting in myself to figure out an answer. Even when I did get answers from my doctors, which was a relief, they didn't give me a straightforward plan. And definitely, you're inundated with things. I've even had the knowledge that I have this pill for a lipedema, or this machine that might help my disease fat in my legs. I've had to really think about, okay, what is sustainable, and what is not going to harm me? I don't even know how my veins are with my legs. I haven't had my appointment with a veins doctor to kind of see what's going on with my legs. And because I have hypermobility, I have more stretchy skin. So by doing some of these things that are supposed to help, I don't even know yet if it's going to help me, or if it's going to harm me. I really want to have every one of us unlearn, even within our own communities.
I'm all for people healing their lipedema, doing everything I have done, everything from extremely practical things to all the way to psychic healing, and I believe that there is a place for all of that. However, in my experience with doing all that, it hasn't led me down to a place where I feel very confident in what my body is doing. I also kind of feel like, oh, no. Well, is that the one thing that I'm missing? And anytime anyone says that I have healed X, Y, Z, that should be not like our impetus to buy, follow and see what they say, but to kind of pull it back. I have lots of talents, and some of them cross over with helping others heal their wounds, their bodies, all of these things. And I've had evidence of that, and I haven't been able to figure it out. And once I do, I'm never going to say that this thing healed me. It's too complex. There's too many things going on. We have like five balls at least going on like a juggler, and I'm not good at juggling. It's kind of like whacking a mole. You get one thing down, and then something else creeps up. So we need a very deep healing. Superficial things aren't going to work for us.
Also, if you need surgery, or if you can't have surgery, or maybe you don't have any doctors, or that knowledgeable, navigating this is quite a pain. So our version of wellness isn't what the mainstream version of wellness is. When we buy into that, we kind of get gaslit over and over. Being told, calories in, calories out forever. Or try this diet, or maybe do intermittent fasting. And even within the community, there's tons of different diets and techniques that work for them, but it's not one way. So when you're really sick, and I know for me, I'm looking for that one thing to kind of hold on to, to help give me some motivation to continue to heal on this journey.
I was reading in a blog the other day or a Facebook group, I don't know. But someone said, it shouldn't be a journey. And there's some truth to that. Once you get diagnosed with any of these conditions, there ideally needs to be a more straightforward plan. But it really is a journey, because your body's an experiment with this. So it's not until we feel comfortable showing our bodies, even if people are looking at us, and I know I feel my shopping cart shame and all of these things, or even when I'm teaching, at the back of my head, I want to scream. It's like, I'm not lazy. I eat really well. My body just has diseased fat. I have fat thighs, a big bottom, and big calves. Now, my arms are big, and my weight is going up. And it's not because of my lack of interest in my own health and body, it's because my body responds differently.
I want everyone to have permission to be released from this idea that if you just did this dry brushing technique, which doesn't, by the way, do more clearing first. If you just ate cleaner, if you just stretched more, if you meditated more, if you are aligned with this sort of practice more, or got this device and did that more, that you would finally have the answer that you're needing to feel better, and your body would start responding with going down in inflammation and less pain. Because the truth of it, what people don't really know is these conditions are painful, and they stop you from moving in life. Whether it's something like POTS where you have to lay down. Same with EDS, chronic fatigue where rest is the only thing that's really going to help you realign your system. It's not about doing more, it's about doing less.
And if you're self conscious like me, hopefully you're not. But being over weight, as I quote, unquote my size because of the lipedema and needing to rest a ton, now that's changed. But in the beginning, I can't rest because I have all this weight on me. What are people gonna think of me? I'm not doing more to help my situation. When in fact, I had to get a wrap around. This is my body right now. It is super inflamed. There's red flags going all over. Every part of my system is in crisis, and I need to stop viewing myself with harsh eyes through other people's expectations and doctors saying that I'm fine. Or maybe I just need to move more and eat less, all that BS, and really find out what I need to get these things underway. And it's very complex. Very, very complex.
The food that I can tolerate and eat, and help me is sometimes touted as the best diet for lipedema, and that is absolutely the worst diet for me, the worst way that I could live. Also doing things like water, like swimming, water stuff for lipedema is great. But when I tried it, I crashed. I couldn't understand it, not until I was diagnosed with chronic fatigue and my heart rate. Everything was way too much energy, and I needed to expel. I want you to know that you are doing healing right for you. We are not doing healing wrong. We are not engaging in practices just because other people might have done some energy work and cured their condition. That doesn't mean that if you do energy work, to stop doing it. It means that your path is going to look different. And sometimes, your body looks different that way.
Let's be honest with this. So much of wellness culture and just how people view things now, because we've been on a date with what it looks means to be healthy and fit, and to eat the right foods, and not have these medical conditions is rooted in ableism. But fat phobia and a polished esthetic has very little to do with true well being. We're so inundated with information, even like this podcast. I don't know, I forget how many, but hundreds of thousands of them. And the information sometimes gets pushed because the aesthetic is nice. Because who doesn't want to do two different things and then look all happy, feel good and have a nice esthetic. We like beauty as human beings. But how we see beauty and how we see others really needs to change, and that really, I think, stems from us. Because it's not about performative wellness. It's not about trying to do things to force our bodies into a way. It's actually really a new way of well being. It's just honoring our systems that need support. And sometimes, that support is the exact opposite of what you're told.
And it's really hard to kind of hold that space when you might have family, friends, people just around, jobs where that is not their experience. So when you have an invisible illness, people don't really understand. They look at you through the eyes of what they do understand, so they're not horrible for doing that. It's just we have to do a lot more education, and that can be really exhausting, and it feels unfair. If they only knew sort of things other than screaming at people and being like, I do. I look at what I eat. I eat well, and I still am this weight. My body still looks like this because my legs are larger, and my lower half of the body is larger. Esthetically, it's not what the mainstream is. But if I had a shirt, that is me needing to educate people. Because when they look at me, I don't always look ragged out and tired. I don't know what someone with chronic fatigue would look like. But I guess just saying chronic fatigue, you would look like, oh, my god, I don't know, I'm tired all the time. I'm not sure. Same with hypermobility, POTS and mast cell, because mast cell isn't histamine intolerance. But it's way more involved. These are all full of pain. People don't understand how much pain we're in, and how it can affect your mobility.
So let's turn a corner today, and let's just disconnect from wellness culture. That doesn't mean that you opt out of society and you don't see things. You're not part of it. But once it comes up, find some boundaries within yourself to be like, no, that's not for me. My body is not like theirs. My body's different. It responds differently. I have a whole group of women. I don't know how many the numbers are for hypermobility, MCAS, chronic fatigue and POTS. But I do know that around 11%, give or take, worldwide are women with lipedema, so we have a huge base of support. It's just now about embracing that. Knowing that even if you don't have women around you that look like you do, you're definitely not alone. And one last thing, no matter what we look like, how our experiences, what we're dealing with, we are all worthy of care. Healing is not a branding opportunity, and it is a birthright. So with that, let's get lymphatic, and let's break this down.
So all of these things too that I'm talking about are lymphatics. It is a newer system we have in our bodies forever. But as far as research and what people can tell us about us and the breakdown. So all of these things are lymphatics that need to work in order to do many things, but get some of the larger molecules and some of the stuff that needs to be cleaned out of your system well. In each one of these things, I talk about lipedema, MCAS, hypermobility, POTS and chronic fatigue. There's a breakdown in our lymphatic system, and each one has a different sort of breakdown synopsis, according to the research. But basically, it's not working like it should, and it needs lots and lots of support in order to get it to work. So finding different manual techniques, if you find a good MLD or a CLT, someone that knows how to work with lymphedema and lipedema.
But usually Vodder, and there's a few other techniques, there's a Brazilian technique that's more popular online. I don't know about that, but I do know water and a few other techniques are more classical. And therefore, to help gently push out that lymph, give it the little kick in the bottom that it needs that's gentle. Also, compression therapy helps along the lines. So whether you can get into your healthcare system and go along with a decompressive total decongestive therapy. What I would recommend is talk to your primary provider that does all your referrals and refer to a PT or an OT clinic. However, your insurance is set up to work with someone with lymphedema that is caused because of lipedema. That's typically how the wording is.
But get a referral from your primary doctor to go to a PT or an OT that knows about lymphedema. And they will most likely always know about lipedema, those PTs and OTs, and they will know about total decongestive therapy. Say that's what you would like, that's what you're interested in, and see if you're a candidate for, and they'll wrap one side or the other. After you're doing that, then they'll usually set you up with none or with the words, so let's take this out. When we do the thing, they'll set you up with a compression hose that's specifically designed for you. So they'll take measurements, and they'll get you into the right gauge that you need for your compression hose. Someone will come and measure you, and you get these flat knit garments that are tailor made. Also, it gets you in the process of potentially getting a pump at home that could or could not be used, could or could not be covered by your insurance.
So once you're kind of in that system, you have to tell your PCP that you would like this decongestive therapy. Or actually just an OT for your lymphedema, aka caused by lymphedema. So those are some things you could start doing, and some gentle movement. Depending on what level and how many of these conditions you have, you always want to start with gentle movement. Think of 25% of your total thing you can do, and then see how much that drains you and pace yourself. But any sort of just standing and raising your heels. If you can't stand, just raise and lower your heels. Get those calves and lymph flow from the ground up flowing. Take some courses. Watch some videos about how to clear your own termini around your neck, and all the major sort of choking points for your lymphatic system that gets clogged up that just needs a little bit more love. Definitely, do some deep breathing, and that is just a few minutes. Or learning how to do it. The longer, the better. You could do it in segments.. But just taking a few moments and trying to expand the belly and contract it, that also helps as a pump for your lymphatics that we have a ton in our stomach. Get some hydration, and don't put any stuff in it.
No A1G, no green stuff out there. Just start with hydration, and then look into your sodium levels. And there's usually sodium, potassium, magnesium combo. There's DIY and all these tons on the market. Find something that works for you that doesn't give you any intestinal distress, and that really helps with energy, especially with fluid and blood flow. So there's many things out there that can help. The wellness culture really just over simplifies it. Just detox, or just do this, or take this parasite cleanse. But if you're in any of these situations, your detox system, the lymphatic system is sluggish, and then our liver, which changes and helps with all that usually is overworked, because we're usually in a chronic state of inflammation by the time we find out any of these things. So our system, if we try to detox too soon, or put too much through our liver, or too many supplements, it's not going to work. And it's really going to make us feel worse. So remember doing the thing that looks like it would help may not help. Do your research. Take it slow. We need to support the system gently and not shock it into performance, even though I know my tendency is I want to go for it.
I've felt awful for decades. If there's a solution, I want it now. I want it to work immediately. And that has come to bite me in the bottom quite a few times so I'm here to say that I'm still not perfect with it. But when I say these words to you, I'm saying them 100% to myself. So let's get into that more, doing more. So let's do a little myth buster moment here. The first myth is, you just need to move more. The reality is if you have chronic illness, especially chronic fatigue or POTS, pushing through can lead to something called post-exertional malaise, a full body crash. So by doing that, you're going to crash. It could be a few hours to a few weeks, or longer. So pushing is not the way you want to do some movements. And remember, resting is not laziness, it's not willpower, and it's really more about biology. You need rest. Your systems aren't working. You're already in a state of overload, so pushing it more is going to overload you more.
And then aside about MCAS and lymphedema, I think also EDS too. So a lot of times, heat too much, going out in the heat, pushing, raising your heart rate, doing like a hit class, something like that. Doing more will put you into a crash with those as well. Because if your body's inflamed, and then the heat swells, and then you're swelling, and then your body is telling you what it needs. So if it's a crash, you need to rest. So instead of going through those waves of up and down, look at your movement as something that's going to help benefit you. So on days where you're really not feeling great, just try to pump the feet, bring the legs up the wall, circle your ankles, do a small little twist, deep breathe, get your torso moving. And then days when you can do a little bit more, make sure you have your compression on to support you during exercise. Make sure it's not too hot out, put yourself in situations where you're only starting out with 25% or less of what you think you can do, so you can build up some tolerance so that the movement benefits you. Because you do want to move to get lymphatic things that help the lymph and your body wants to move that creates more health, but you have to do it in a way that does not move more, to feel better. That's not us. We're just not the whole other culture. And what works for some people definitely does not work for us.
The other thing I wanted to talk about, and this is my true experience. You can have a different truth out there. But this myth is dry brushing will clear your lymph, truth. Maybe it helps in some way. But I know for me, there was a lot more information about the lymphatic system, and people were really talking about how to clear the certain main portals and drains. I was dry brushing. And when I dry brush, my legs would swell more. My stomach would swell more. I'd feel awful. It felt like everyone else like, oh, I dry brushed, and look at my body shrunk. Nope, not for me. It grew. So it affects the mast cells too. Because remember, if you have MCAS or even EDS, these immune receptors are a little bit different. They just work a little harder, and they're located. So everything is not quite the same as a body that doesn't have any connective tissue disorders, any sort of lymphatic disorders, any disconnection from your hypothalamus and your central nervous system where inflammation is chronic, and your body's just been overwhelmed for a long time, or how your blood and the fluid. You're standing in line. There's a pressure change, and how fast your body can accommodate that pressure change, all of these things. When you dry brush, it can activate your mast cells to go and lay like, what's going on? And then when your lymph doesn't work, it actually is just making you feel more pain, and it just moves into another place where it's congested. So figure out gua sha, dry brushing. All those things look cool and they're fun. But with your body, see what you need, see how you need to clear your drains and how gentle you need to be.
So with all that being said, today, we're going to shake off this old way of wellness culture. I want to do a little good flow, called shake it off, literally. And that's what we're going to do. Just clear some BS. So if you can stand up, you could do it lying down, sitting, whatever, but just start to shake out your hands and just think of everything that doesn't work for you, that you've tried. Maybe you feel frustrated about the things you see, and that just gets your blood boiling because you're like, that's the wrong thing for women like you, and there's tons of us that it doesn't work. Just get it out there. Let your arms shake. Kind of move your spine. If you're sitting or lying down, just kind of move your head, shake your feet, shake your legs, just kind of let everything shake out of your system. Do a few inhales and exhales, and be like, I'm not gonna let this affect my view of myself or my journey for my own health. These things might be true for others. They're not true for me. I don't have to take them on anymore. So just send them all away by shaking, doing a big, dramatic exhale several times. And then say, I release all the SHOULDS. I release all the SHOULDS. I let go of wellness shame. I let go of wellness shame, and just feel good about that. I feel like, okay, this is my new reality. I've let go of all the BS. I've reset my vibe. I know that my wellness looks different, and I stand in pride with that.
So thank you for listening. For those of you who listened to the end, thank you. And did the little shake off with me. So we have come to a close. So if you have felt left out of wellness culture, I want you to know that it's not because you failed, and it's not really because of nothing you've done. But it's because it was never built for you in the first place, and you don't need to be part of a performative healing club to be worthy of deep, lasting wellness. You need to find the things, pick and choose that work for you and build your own toolbox. You don't need to buy more, you don't need to be more. You don't need to fix more. You just need to listen to what you need. What your body's been wanting you to do the whole time is mostly rest. Figure out a way to get your inflammation down. Figure out a way to go into that rest and digest. There's hundreds of tools now along those lines.
If this episode has made you feel more seen, I gave you a reason to ditch the celery cleanse, go ahead and share it with someone that you know would also benefit from it. And don't forget, you can find some more tools. Or if you have any questions for me, please email me at [email protected], or you can find information and resources at my website, donnapiper.com Until next time. Be soft, smart and ditch the wellness BS that never worked for your brilliant body anyway.
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PODCAST OUTRO: If this episode made you feel even a little more seen, brought you a dose of clarity or pointed you toward your next step, please rate, review and share it with someone who's been quietly carrying the same questions. You can find some more resources, blog posts and healing tools over at donnapiper.com. Don't forget to subscribe so you never miss an episode. Until next time, Dear Body, I'm listening, and I am so glad you're here.
