INTRO: Hey, beautiful soul, and welcome to Dear Body, I'm Listening, the podcast for women navigating chronic symptoms, invisible illness and that daily dance between hope and exhaustion. If you've ever been told it's all in your head, well, this podcast is for you, because your body is not lying, and neither are you.
Hi, I'm Donna Piper, movement therapist, Pilates instructor and chronic illness navigator. After years of being dismissed and diagnosed, and doing everything, quote, unquote, right, but still getting sicker, I created this space to tell our truth. Here, we talk about swelling, brain fog, nervous system crashes, and the kind of symptoms that don't always show up on lab results. We're going to explore lymph breath, movement, self trust, latest research books, relationships, basically, everything, all from a place of compassion and honesty. This isn't about fixing your body. It's about finally being heard and getting some answers.
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Donna Piper: Hey, beautiful soul, welcome back to Dear Body, I'm Listening. Today, I've got something really special for you. I'm joined by Hiba, also known as Lipediva. She's a powerful voice in the lipedema community, and brings so much heart and honesty to the conversation. I really enjoyed the conversation so much I forgot to do this intro. So it's gonna look like they're from two different days, and they definitely are. We talk about her own journey with lipedema, to how she got diagnosed, and to the trauma work she's done along the way. She shares wisdom that's real, raw and so needed. This conversation was amazing, I can't wait for you to hear it. Let me know in the comments how you feel about it?
Hiba, thanks for being here today. I'm really excited to have this conversation. And so just as a little intro, tell me about anything you want about yourself personally, and then maybe when or how your lipedema journey started.
Hiba Hamati: Yeah, absolutely. Thank you for having me today. It's a pleasure to speak with you. So it's been five years since I diagnosed myself with lipedema. So during the pandemic, I had developed a separate health issue that led me down a Google research rabbit hole that ended up with a research paper written by Dr. Karen Herbst that outlined lipedema, and I remember reading it and thinking, that is me. And so that kind of started my journey down to getting a diagnosis. A year later, I got an official diagnosis. A year after that, I had my first surgery, and I am still in the midst of that surgery journey right now. So when I first diagnosed myself, I remember just thinking, how did nobody catch this? How did nobody connect these dots for me? Because a lot of what I had experienced was so textbook. And I remember just being angry that it took me and this random Google Search to figure out that this is what's going on when this is a disease that's been known since 1940. We've known about lipedema since then from the Mayo Clinic. And yet, even with having all of these textbook symptoms, I still had to rely on myself and Google to help me get a diagnosis. And I just remember being livid about that. And if I'm honest, that anger destroyed me for a while, because that's all I could focus on. It's how much of my life had been wasted, how much different my life could have been if I had a proper diagnosis. And I realized that either I can let that anger consume and destroy me, or I could funnel it into passion for helping others, for helping get a diagnosis, for advocating for other patients. And so what I've tried to do is really just refocus that anger into passion, and really try to help advocate for other people. Because nobody needs to experience what I did.
Donna Piper: That's such a healthy way to deal with anger, and I think it's very common. I know, I went through similar things. When I got my diagnosis, I cried in my doctor's office of relief that someone believed me. And also, I was so angry because all my comorbidities could have led me to this. I feel for you. And that is really impressive that you found it on Google, which is amazing for Google, thank you. But also, that you were able to take the steps that you need in order to get the diagnosis, because that takes a lot of energy. It does, in my experience.
Hiba Hamati: Actually, one of the reasons why I'm passionate about advocating, I'm fortunate in that I have the time, I have the resources, I have the ability to do all of this, to chase all of these diagnoses down, to figure out all of these things on my own. But if my life had been a little bit different, if I was a caretaker, if I had children, if I had more people depending on me, I wouldn't have had the time or the bandwidth to dedicate to that. So I really think that, yes, I was able to do it and figure it out. But I shouldn't have had to. And for a lot of people who have this, they don't have the time, they don't have the bandwidth, and so they go to the doctor and are told diet and exercise is the only answer. And they keep doing that over and over without getting results. And then they start internalizing that, maybe it's me, maybe I'm not doing enough. But if they don't have the ability to do what me and others do, of going down these rabbit holes, of seeing a ton of specialists, of trying to get answers, of traveling all over to get proper medical care, they don't have many options. And with the fact that we still don't have an ICD 10 code to help diagnose lipedema, that makes it even harder. So I just think of the people who are not in the position that I'm in, who don't have the resources that I have, the time that I have to be able to do that, and that's who I want to advocate for just because they don't have the time and resources for it doesn't mean that they have to live with this horrible condition without knowing treatment options and ways to manage it, to make their life, the quality of their life a little bit better.
Donna Piper: Yeah, I totally agree. I remember being in the office where my doctor diagnosed me, and she is in the field. She wrote these books, whatever. That's how I found her. That's a whole other story. But I was thinking to myself like, oh, she could assess me. She has the ultrasound to confirm that I have this. I'm like, why isn't this at all high schools or things? I'm thinking to myself, why not? I don't want to put us on that tangent. Some of these things are just the knowledge to see if you have it is necessary for screening, I think for mental health. I know we're going to talk about that a little bit. But can you combine, or whatever you want to say about with your surgery and also your mental state once you had it, what are the physical benefits? And then what maybe are some of the pitfalls of the mental health side of the surgery that maybe you weren't expecting?
Hiba Hamati: Yeah. This one is a huge topic, because I feel that we're very fortunate that we have more and more surgeons who are well versed in lipedema, and well versed in the removal process, and it's wonderful to see that. I think an area that is severely lacking is post op mental health care. I know that that's difficult to put completely on surgeons. But I think there is a lack of acknowledgement of how difficult these surgeries are. Physically, mentally, emotionally, it is a huge undertaking. Just from a physical perspective, the trauma that your body goes through in those surgeries, you're physically removing up to 10% of your body in these surgeries. And when you do that, if you have another surgery like the weight loss surgery, or organ donation, or any of those types of surgeries, you have a mental health screening that happens beforehand, because those are not minor. We don't have any of that. We prep ourselves with compression, going to MLD, getting your movement in, making sure you're getting the right nutrition before surgery and after surgery. It's those same things, too. And the part that's really missing is acknowledging that this is a huge thing that's happening, and there's so many emotions that are attached to it. And when we focus so much on the physical and just ignore them, maybe not ignore, but not give proper attention to the mental and emotional toll that it takes, it can be very dangerous.
So I'll give you just an example for me. I am very fortunate that I have a very good support network, my family, and my friends. I was in a good place. I have a flexible job where I could take time off to recover from these surgeries. I can afford to have them. That's not a small thing either. Just the financial strain of this disease, management of it, surgery aside, so I felt like I was in a good position for these surgeries. I was physically well enough to have it. And I remember the first one just being blown away by just the emotions of it, and looking at my legs and seeing them bigger than they were before surgery because of the inflammation, swelling and thinking, what did I do? This was a mistake. And going down that spiral of, I can't believe I did this. I had one problem before, and now it's even worse. So you have that, and then there's also become very isolating. So for me, I was embarrassed that my legs didn't look much better right away, and so I hid. I didn't want people to see like I had been talking about, oh, I'm having this surgery. They're going to take this, and they were able to remove this much. But your legs look the same and maybe bigger. So of course, I'm thinking that I'm going to be judged for it, or that I don't want anybody to see it, and think that I didn't do something right. In a time when your mental health isn't great, you're isolating yourself from people who care and love you, and then you're just internalizing all of this. My legs are bigger than they were before. Is this how it's going to be forever?
And for someone like me, I recover very well from surgery. I'm the annoying patient in the hospital who was up and walking the hallways the first or the next day. But it takes me nine months to get all of the swelling out of my body, for my body to just calm down enough to get back to where I see the results. And so if you don't go in prepared for that and know that that's coming, and just the emotional roller coaster of just, it's a huge surgery, you're removing so much of your body at once. And for us, for so many lipedema patients, we have body dysmorphia anyway so we have a natural disconnect from our body. And so then, you have this surgery that's making that disconnect even wider. And so I think that it's just a recipe for disaster. I really encourage a lot of patients who are having surgery to really work on the mental aspect before surgery, just as much as the physical because that's I think where probably you're most vulnerable.
Donna Piper: That's some beautiful points. I'm getting surgery. Coincidentally, we didn't know this at the time, but we have the same doctor that we're going to go to, which is pretty cool. But for me prepping, since I was a teenager, I had thicker thighs than my friend. Liposuction was out there. It's like, wouldn't that be great if I just took this off? And someone knowing my history and like, I do know that there's some mental issues that I'm gonna have. As much as you want something, when you get it, sometimes you have that, oh, no, you had experience. And then there's not a lot of extra support. There's more communities and stuff. But you have to really seek out those communities, the isolation you talked about to see, okay, where are you nine months from now? Because these nine months, I need to put something in effect. You live with your thoughts, your voices and your feelings, so we're kind of the worst, like we don't have a nice fence or barrier to think of these negative thoughts. Especially when you're not feeling well and recovering, and you've never had it before, so you don't really know what to expect. It's brand new. I think there's a lot of anxiety and fear. Oh, no, what if it's worse than before? Because I knew how to manage it before. You've had all of your surgeries--
Hiba Hamati: I had four. So actually, talking about another mental aspect of it is knowing that even if you have these, you still might not end up with what you want. So for me, because I was a stage 3 patient that has probably had this in my body for decades, probably since puberty, is when I noticed my arms and legs getting bigger, it's been a long time that it's there. So there's only so much that even the most skilled surgeon can do, and so there's something very hard to accept about that. I'm doing all of this, I'm going through all of this effort, going through all of this pain, this recovery, and I still am probably going to end up with a body that I don't necessarily love, and that's a hard pill to swallow. There's only so much that can be done when the tissue has been damaged, the way that it has with age, with how and what stage you are, so many factors go into how much fibrotic tissue you have. There's just so much that can be done, and it's hard to accept that. Like for me, I still have a couple more surgeries to go because I have a lot of loose skin. From those surgeries and weight loss, there's a lot of loose skin that has to be addressed, and additional pockets that have to be cleaned up. And I think, okay, I'm going to have gone through all of these surgeries, all of this effort and time away from work, and money, and pain, and recovery, and then I'm still not going to have that flat stomach and nice smooth legs. They'll be better, they're stronger, they're healthier, they're more mobile, all great. But there's a grief in that of just acknowledging and accepting that even after all of this, I still might not get what I want. And so there's a lot of work that has to go into it. What do you define as success for each of these surgeries?
And so I remember with my first one, I just want some mobility back, and I want a break from the pain to think clearly of my next steps because I felt like I was making decisions based on pain. When you're in pain, when you're hurting, you're desperate, and so all of your decisions become desperate. My goal was, I want to just get to a place where I have a little mobility back so I can just get back to moving and just living. And then I want to be able to think clearly enough to decide, what's next? How am I going to tackle this? Because before that first surgery, I threw every conservative therapy that I could at my body for like a year and a half, and it just steadily kept getting worse and worse. And I was so terrified because I just saw my strength and mobility just month after month worse, and worse, and worse. And I was like, okay, we've got to adjust something here. But yeah, you just have to think about what you consider success after surgery, because it's not always aesthetic. I think that's especially for later stage patients. That's a hard thing to accept because, I don't know, you do all of this, but it's not necessarily aesthetic. But it's okay if you'd like it to be aesthetic. I think that's the other thing. Sometimes, we're just like, well, you should just be thankful. Just be thankful that you're able to walk. I'm like, I know, but I'd also like a flat aesthetic. I mean, sue me. I've never had one.
Donna Piper: It's very important. And I think that's the part that everyone tries to do. We want to feel better. There's many things to say, right? But I think sitting in that grief of like, what I've never had, and I'm speaking for myself. I've never had that typical, standard body, and I want it. There's times that I've wanted to achieve it. And because everyone else was able to do it, I thought that maybe there is some way, even with surgery. It's expensive. I could spend probably 10 hours a day with conservative therapies, making sure I have this diet, blah, blah, blah every day, and that's not even what the recovery requires. I think it's important to be like, it's okay if you want to look esthetically. There's also fat shaming. I know, I've experienced it for myself that I do to myself like, okay, so if I'm gonna lose this weight and I'm gonna look better, I want to look like this other standard. And if I don't, then I'm shaming myself because I'm fat. I'm shaming myself because I can't make it look like how I want it to look. So yeah, it's kind of a double shame. And then I would think it would be and probably a little traumatic. Probably more dramatic than you, but I would think it would be devastating for a minute to have those moments of like, okay, I've done all this stuff, and I'm still not where I am. And I think to pause on that for your mental health and deal with those feelings. Because of the feelings, there's a debate. But in my studies, feelings really do influence your thoughts. It's not always the thoughts going down. You can't trick yourself into believing something that you know is not true. You could tell yourself thousands of times something, but if you know it's not true, you're never going to F and believe it. So you have to kind of go into that layer that I feel like is like caliche. If you know what that is, I'm from the desert, so when the rain comes down, it comes like a thick cement layer. And that's all of our emotions, the sadness, the grief, quote, unquote negative emotions that we don't always want to spend some time in. So with all of your surgeries, what have you done to kind of help you through that process of your mental state, and to kind of be more connected with your body in a different way?
Hiba Hamati: I've been working with a trauma therapist for a little over five years. So it's interesting. I started seeing her in August of 2020, and then I diagnosed myself in September of 2020. So those two journeys have been concurrent, and the timing of it was absolutely beautiful because I needed all of the tools that she's given me the past five years just to survive, managing this disease. But I think for me, I found that I have to address the disconnect with my body, and it's hard. I think it's hard in general. But when you're traveling for surgeries, for me, I have to dissociate to a certain degree just to be able to get through it. Because if I ever stop and let my brain process that I'm getting on a plane flying halfway across the world for this lovely human who I've seen a handful of times on Zoom to cut my body apart, put it back together, and then send me back home a few weeks later, my brain would not allow me to do that, so I just have to treat it as a project. I've got this thing next month. I have to get there, the hotels I have to stay at. This is what I have to do.
The MLD I have to do before it becomes like a project plan. Like I'm just executing, executing. Because if I stop and allow my brain to think what I'm actually doing, I would have the biggest downward spiral, because it's a lot. I mean surgery on its own is a lot. But when you add in the component of traveling for it, especially when it's far, especially when it's a lot of moving parts, like international surgeries are very easy to just allow your brain to kind of just take over. So I dissociate a little bit. But what that ends up doing is I have a disconnect with what's actually happening. So I'm not feeling my feelings. I'm not experiencing those emotions. I'm just jamming them down. Because right now, I don't have time for you, because I have to figure out where I'm going to stay after surgery. Do I leave the hospital? I have all of these things on my to do list. And then inevitably, day five post op, it's always day five, I have a breakdown because I'm checking out of the hospital the next day. So it's done. I let my guard down, and then my body actually processes what's happened, and I just completely melt down. I'm trying to get ahead of it. I'm also trying to just be more mindful of my body. One of the things my therapist has told me to do is when I get out of the shower and I'm putting lotion on, just being very intentional with touching it. That's another thing I've realized for so many years, because everything hurts and nothing feels good. I just wasn't aware of what my body was doing. And so in my mind, I see my body is much bigger than it is, thanks to the dysmorphia. So this actually gives it some context of like, actually have a knee now. I can wrap my hands around this body part. I can start to reconnect with my body that way. That has been very powerful. Because for me, there's such a massive disconnect in how my brain views my body, and what my body actually is.
So trying to close that gap between how I see myself and how I actually am has been very important. Because I feel that after surgery, when my body is going to be swollen and inflamed, I can touch it, and know that that's not my body. This is not the final product. This is just right now. It's responding to the trauma. It's responding to what it's gone through. This is not how I normally feel. And so I think that's an important piece of it. Another part is just having that friend that is just the lifeline of knowing that you can say anything to this person, that you can discuss anything with this person, and just having that lifeline in place, I think, is so critical before surgery. And even leading up to it, the conversations that I have with my lifeline are just like, it's such a relief just to be able to get all of this off of my chest, and just to be able to say the things that are just consuming my thoughts. Because once they're out and I hear them, I was like, okay, all right, that's dramatic. I'm fine. It's not that serious, but having that person that isn't going to judge you or try to silver lining you to death, oh, it could be worse. Well, it could also be better. But we don't say that to anybody, right? We don't say, don't be happy, because somebody else is happier than you. But we say, oh, it could be worse. But this isn't great either. So maybe acknowledge that this isn't great, and we can just move on rather than dwell on it. So that's typically what I've been trying to do.
Donna Piper: I think that's such wise words on all fronts, especially if there's no personal self talk about how your body is, to give yourself lotion or something, a ritual to kind of connect you to the ground in your body. I know for me, as my legs grew and I gained all this weight, I don't want to like those parts that hurt. And I know that I'm avoiding it. But I'm like, I don't really care, because I think there needs to be more honest conversation. It's nice that you have a therapist or someone you talk to, because going through all this pain every day is such a drag.
Hiba Hamati: Like such an ugly person. Pain makes you a completely different person. And the way that I describe it to people is, have you seen the movie Shawshank Redemption? I feel like pain just chips away a little bit every day, and it's just constant chip, chip, chip. And you see it, and it's a handful of dirt, a handful of walls, and you're like, chip, chip, chip. And then you look and there's a big gaping hole, and that's how it can sneak up on you, but a little bit every day wears you down, wearing you down, wearing you down. And then it gets to a point where it's just like, no, there's a big gaping hole here. And then you're scrambling like, how do I fix this? What should I do? But I don't feel good, and that's one thing that just, oh, gosh. I remember before my first surgery, I was in so much pain, I had lost so much mobility, I was so freaked out about just how much my body had changed in a relatively short amount of time, and I just remember thinking, is this the right thing? Should I be having surgery? Should I wait? Should I try to balance my hormones? Is it going to come back immediately? Try to make all of these decisions, and there's no clear cut answer.
When I had gallstones, one of them was blocking my bile duct, and you got to get it out because it was big enough to block the duct. So it was very clear cut, we have to get it out, or you have a risk of it getting jammed in the bile duct and causing a problem with your liver. Very, very clear answer. My arm was broken. We have to put it back together, pins and screws to hold it in place. It could be this? It might be that. But with these reduction surgeries, yes, it could be the best path. It might not be, but right now, this is probably the best option for you, depending on how you recover, depending on all of these variables. And then the person making the decision doesn't feel well, so I'm not clear headed, I'm not making decisions from a place of clarity or logic. I'm hurting, I'm worried about mobility. I'm seeing myself get weaker every day so you just start making these decisions from this place of desperation. And that, to me, is probably one of the hardest parts of deciding on what path you take with surgery or not, because I know that it's not for everyone. It's very hard to make that decision. Because if you're wrong, it can be very, very bad for you. And you're making it from a place of desperation, pain and vulnerability. It's hard to just make that choice.
Donna Piper: A few things that you've said, for me, the mental health part to have some other place where you can at least talk it out with clarity so you can talk about it. Because it does suck. I don't feel happy about it, and I don't want to bitch about it, but I lie a lot. Most people, probably both of us think, oh, she's fine. She's happy. She has a smile, things are good. But inside, I've learned to live with the pain. But it also makes me a liar, because I really don't want well intentioned stuff to come back to me. People are nice and friendly, and they can say what they want. But sometimes, I'm just not in the mood, so I'm just like, oh, everything's great. But there's a lot of pain, there's a lot of suffering, there's a lot of mental anguish even to get me up to be friendly to people sometimes.
Hiba Hamati: It has to happen just for me to be here in a room, or out of the house, and not miserable, and not a rightful, hateful human, just sitting being miserable. I think one of the things that I'm so thankful for surgery is I think about how much less mental calculations I have to do just to get through my day to day. I think before, it was like, okay, something simple. I'm meeting a friend for coffee or dinner, and it's like, but what's the chair look like? Because I can't sit on just the little metal chair for hours and hours, because that's going to kill my back and whatever. Oh, we're sitting outside. Well, it's hot. My feet are going to swell. I can't get my shoes back on if my feet are swollen too much. How am I going to get out of the car? Oh, it's a far walk. I can't do that in these shoes. I got to make sure that I have another pair of shoes that I can change into. And you're constantly doing and then it's like, oh, well, I have an event tonight, and somebody wants to meet me in the morning. And I'm like, two events in one day. That's a bit of a bit of a struggle.
You're constantly just doing these calculations of, can my body do this? Well, I have something that I have to do tomorrow. I can't be sick, I can't feel bad, so then I have to cancel this. And then it's like, well, why aren't you coming out? Why aren't we seeing you? Why are you isolating? How do you explain that? It's like, well, I've done all the calculations of, if I go tonight, then tomorrow, I can't do this, which means I also can't do that on the day after because of the cascade. It's hard to explain that to somebody who isn't dealing with a chronic illness, because that's hard to understand all of the calculations that have to happen just for you to exist normally, like a normal human would in the day to day world. So much effort, thought and planning has to go into that. And I think what's probably been one of the biggest changes for me post op is just seeing how there's just not as much calculation that has to happen like, I was traveling this summer, and I was out every single day. I was in the heat, I was walking. And typically, I would think, when I have a day where I'm just out beginning morning to night walking and moving, and the next day, I need to be recovered. But I'd wake up and be ready to go for the next day. Like, wait, what is this? This is an interesting development. I can't help to think, is this just how people live? Is this how just a person lives their life that doesn't have chronic pain and fatigue? You just get up, and you're ready to go. And if you have a tiring day, you put your feet up, and maybe you're a little sore the next morning, but you sleep in an hour, and you're good to go.
Donna Piper: I think that too, is part of mental health. Because then, you are figuring out what it is like to now live in this body with your perspective, even though you want it. So it's never like, oh, a lot of this stuff. When people talk about being sick, I know for me personally, and one of the reasons why I started this podcast is just to talk about so much stuff that you do behind the scenes. As you said, there is this level of, once I get what I want, how am I going to fit into it? And are all of my thoughts about how, because you talked about body dysmorphia, traumas, all this stuff, is that still going to filter how I see the world? Because my motivation is always going to be aesthetic in the background. I'm not going to lie. But the reason why I'm also going to get surgery is because my mobility is declining, and I've been a dancer, a mover my whole life. The thought of not being able to move more and more has got worse. It's terrifying to me, more so than the surgeries. That's not going to be easy. But once you're in this new kind of system, you can move more. Then there's also a lot of stuff I think that comes up with trauma of your whole life, of decades, of anything that had come up in the past. I can't think of the words right now, but people say that there could be something that you internalized about your body, about how you were. Could have been a comment in general to like 50 people, and then you took it in because your insecurity is like, oh, they're talking to me. And then that stays with you. So there's so many things like that, I think, that stay with us during your therapy. Or do you guys do trauma specific therapy?
Hiba Hamati: We do a lot of somatic therapy. We do somatic therapy and a little talk therapy, but mostly somatic because I have so much just stored trauma in the body. Unfortunately, much less than before. But definitely a lot of internalized. I have the pleasure of having an incredible memory. I remember everything it feels like, and that's great for some things, and awful for others. Because I can remember specifically when I was five years old, overhearing a conversation about somebody talking about the size of my body at five. I mean, I still remember the exact conversation. I remember what I was wearing. I distinctly remember these things, and they get trapped in my head and in my body. And it's interesting because as I've been doing this work of just unearthing some of this stuff, I've come to realize a lot of things that have been that I just thought were personality traits are actually just a trauma response of just, I act that way, or I feel that way, or I think I'm that way because it's safer. So an example. I was on vacation this summer. I was at the beach. It was beautiful. I saw people that were parasailing, and that was something I always wanted to do. But I always thought in my mind, if something like that ever came up, I was just like, I don't do that. That's too much. I'm too much of a control freak to just be up in the air flying. That's not how I feel. That's kind of the narrative that I put in place. I'm ashamed and embarrassed if I were to go ask what the weight limit is and I'm above it, and I have to tell my way more than that. I even put myself in that situation. So it was always better to just say, I'm not a daredevil. I don't like to do those things.
A random day on the beach. I'm like, I'm gonna go do it. So I just wander up, just pay and I get in the boat. It's like, let's just do this. Why not? And it's funny because I sent the video to my family and friends, and they were just like, who is this? And I'm like, that's me, that's me. That's who I am. I like to try things. I love adventure. But so much of my personality is, oh, I don't like those things. Oh, I don't do that. Oh, that's not me. And so much of that has fallen away because so much of that was tied to how I thought I looked doing it, how my body looked while I was doing it. Was I too heavy for it? Would somebody look at me and be like, look at that fat girl up there trying to parasail. All of these things, these negative, these narratives that I have built for myself of, oh, that's just not me. It's been really fun to see those come undone, and figure out who I actually am under all of this literally and figuratively of, who am I underneath all of this? And so that's been quite fun.
Donna Piper: I know you have some online presence, do you want to talk about that? And then once you declared your whole persona with that, does that help? Did you do it before your surgeries, after, or during?
Hiba Hamati: I think it was right after the first one. So I had picked the name Lipediva because I have, ever since I was a child, been obsessed with lipstick. That has always been my thing. I have a picture like a year and a half where I'm wearing a bright red lipstick, and I have a flower in my hair. Lipstick has always been my thing, but it really became my thing when everything else was kind of falling apart on my body. So I used to always have heels, lipstick and a cute skirt. That no matter what size I was, I was always in heels and a skirt, or a dress with lipstick, all of these things. But I couldn't wear heels anymore because of all the hypermobile joints where I had the tissue. I had so much tissue in my calves and around my knees. So much of it. So of course, heels were the first things to go. And so I'm wearing sensible shoes, which hurt my spirit. Still now, I'm still in sensible shoes as I'm trying to just rebuild all of this. And it still just hurts me to my core. But lipstick is the one thing I never gave up, like that is one thing. Or I could put it on, and I can be who I am. I am that person that will rock the red lipstick.
Lipedema could take so much from me. It could take away my mobility. It took my heels, it took clothes, it took all of these things, but it did not take the lipstick. And not just the lipstick, but what it represented. I'm not letting it take every single part of my body and of my life. I'm holding on to something, and maybe that's the only thing I can hold on to right now, and that is the one thing I will not let go of, like lipedema. That's how I ended up. But yeah, it's just not letting this disease take every part of you, because it's all consuming. It can easily overtake every part of your life. And it's hard to explain that to somebody who's not living with it, that you are thinking about it, treating it, thinking about how you're going to treat it, right? You're always thinking about something related to it, and it's hard not to, because it literally just consumes every part of your life. So this was the one part where it was just like, no, you took my heels. I'm gonna get them back, but you can't have the lipstick. The lipstick’s mine.
Donna Piper: If anyone stumbles on this podcast, all of the stuff that we were doing just after we learned that we have lipedema, but how we were feeling before we had the diagnosis of some sort of clarity is also part of that too. I think this conversation is because you found it online. I thought I had some sort of edema, but I had no idea. I thought maybe I had lymphedema, but I had, it wasn't even on my radar. But still, all those things to get to what you were talking about, to go out to do stuff, to manage where you stopped doing stuff because maybe you wanted to, but because of all the other things, all of that stuff that happens is so much energy behind the scenes that you were living with decades before you even knew that you had this. And fortunately, there's more research, and more people know about it. That's the really great thing. But like you said, there's no clear pathway for any of us because some of us have chronic fatigue, POTS, MCAS, hypermobility, and EDS. I have these really amazing arrays, they are all over like a full package. Can I get as sick as possible before I get some answers? That's awesome.
Everyone's diets are the exact opposite. They know it's hormone estrogen related, but they don't really know. People do great with HRT. This doctor does this, this doctor does this other thing. There are some universal things that are great. And this ICD 10 code would be amazing. But once you're in it, it's not clear cut. Not all doctors say, hey, do compression before and after surgery. Go get complete decompression therapy first. Even compression, there's a wide range of what people do or don't do, and feel good in, and then just, I'm sorry, putting the compression hose on and figuring out like I'm not an idiot, but I feel like I get these things. I'm like, how do I do this? Where do I wrap this aid? There's so many nuances. It's not just compression, it's how it's supposed to fit. There's different styles. How do you figure that out? How do you help someone help you? I'm just really saying that if you're out there and have any of these symptoms that are related to your body that either of us have, reach out, look up lipedema, look up these different things, and see if you can start to figure out a journey that is good for you. But also add in the mental health aspect, because in speaking with you, surgery was great, and I really am thankful I did have the trauma therapist--
Hiba Hamati: Surgery has its own. It wasn't going to do anything. I'll be honest, surgery without the additional work, I think that's probably one of the biggest takeaways for anybody who's considering going down the path of surgery. You have to see it as a tool like anything else, like MLD, like compression, the pneumatic pump, nutrition, movement. It's just another thing. It helps set the clock back. It's not going to fix everything. It does not fix the fundamental issue at the core. You have lipedema, your body creates it. You're just removing what has already been damaged, right? And so if you go into that mindset of, okay, this is one tool in the kit of things that I can do. It's not the solution. It's not the end. I think that's probably the healthiest mindset to have with these surgeries. It's going to give me pain relief, hopefully. It's going to increase my mobility. When I have that, I can move more. You're more likely to want to do all of those other things because your pain is reduced. Your mobility is better. Physically, mentally, you're just freed from the literal and figurative weight that you've been carrying around. But I think it's very important to see it as just a tool, not as the final solution. Because it's not, sadly.
Donna Piper: No. And I think that's a beautiful point, because all those conservative treatments that you've learned, you still need to apply them forever. It's not like, oh, I am free of all this stuff. I don't have to manage.
Hiba Hamati: One thing with the conservative therapies, for somebody who's like me, who has an all or nothing mentality, I am very, very no medium setting. So when I saw the list of conservative therapies, I just did all of them. I wanted to go to MLD. All of it. And of course, that burns you out. It's a full time job. I mean, who has time to do all of those things? And so I think as you progress in your journey, one thing is to just start to be mindful of really looking at the diminishing returns of at what point is it not worth my time to get minimal output. And some things work better for some people than others. Compression works for me, and I've just come to live with it. I'm just probably going to be a compression for a wild type of person till this is all done. But the pump doesn't work for me. I do it, I see some improvement, but I've spent an hour plus in it. I get out, and I don't feel that much better. I look maybe marginally better, but I've spent an hour in it. For me, it's hard. I like it, but I'm supposed to do it. It's part of the standard of care. Like, well, that's one of the things that's listed. So of course, I'm going to do it, but I reach the point of diminishing returns on it. Now, after surgery when I'm cleared to do it, I see a much more, bigger improvement in the pump, so that's when I incorporate it.
It's looking at, where do you put your time and effort to get the most impact on managing the symptoms? Because otherwise, what's going to happen is you'll burn out because you've done eight things a day every day for however, and then at some point, your body doesn't respond the same way to them. So you're constantly just having to figure out, like, okay, right now, my body loves the pool, so I'm going to keep going to Aqua Fit and keep staying in the water as much as possible after surgery. That's not a possibility. So what do I do to get something similar to that benefit? Okay, I'll do the pump. You just have to constantly reassess and figure out, where am I going to put my time? Because if you just keep trying to do everything all of the time, you're going to do nothing, because your brain is just going to be like, no, I've had enough. Thank you for this, but no more, especially when you don't see the results. And that's hard too, because success is also not getting worse, right? So success isn't just that you're getting smaller or that you're seeing an improvement. That way, success could also be that it's not progressing. And so you're saying, the same size is actually successful, which is hard for us, sometimes, to grasp and to accept because we've been conditioned to think smaller is better anyway. But if you put in all of this work, and then you look down and you just think, I'm the same. Why am I doing this? Well, you're doing this because maybe if you hadn't done it, you'd be a little worse off. You'd have more swelling, you'd have more pain, you'd have less mobility. And so that's also a big reframe of what success is. Because sometimes, success is the same.
Donna Piper: Yeah, I have all those. I did everything, and I was like, I'm marginally better, but not really. Or some things got worse. So I do have to remind myself, this isn't a lifestyle, and it's keeping me at this. If I didn't, who knows where I would be without it. So as long as it's not getting worse in all areas, because some things do get worse, then you're a human experiment. And if you're like me, that you have chronic fatigue too where your mind's not working as it used to, honestly, sometimes I forget, I'm like, okay, I'm gonna track all this. I track it for a few days. Then I have a flare, and then I'm like, yeah.
Hiba Hamati: Survive today. That's what's on the list for today, to survive it.
Donna Piper: Looking back and kind of seeing the perception. So I think, again, back to the trauma and the mental health. Trauma does change how we perceive things. So it's also trying to realistically see how we were before, right? And how far we've come, not pulling everything back to the negative like, well, nothing really worked. We have to really look at different things in our life where you can go out with your friends and do things, and not have to figure about shoes, weather and all that stuff. Because I do the same thing. I have to cancel because I'm gonna get sick.
Hiba Hamati: You have something important the next day for work, then, you can't. There's always just those calculations, and it's hard.
Donna Piper: I love this conversation with you, your wealth of knowledge. I know you do some advocacy, if you want to talk anything about that, or any kind of final words that you want to say as we wrap up today.
Hiba Hamati: Yeah. So in terms of advocacy, I'm on the board for the American Lipedema Association. So we have been working behind the scenes to get the ICD 10 codes put into place. We have a campaign going right now to try to get as many people as possible to email the CDC about why we need those codes. So if you go on social, onto the American Lipedema Association page, you can see that campaign with the email address and a template for you to fill out. It's a fairly new organization, so we're trying to get our bearings. We've been doing a lot of work on strategic planning and figuring out where we're going to be putting our focus for the next year or two. So that work has been underway. We had a great member event a couple of weeks ago where we talked just about advocacy, some training on that, and then talking through some big projects that we want to focus our attention on in the coming year. I've been doing a lot with that. I'm actually headed to the World Lipedema Congress in Rome, so I'll be speaking there on the topic of just navigating some of the gaps in care. One thing that I've seen a lot of recently, especially as we have more and more awareness, which is wonderful, but we've seen a lot more kinds of questionable old practices, services, and products that are being pushed to our community. So I want to just highlight that and really discuss that there's a lot of people out there who see a vulnerable, desperate community, and want to take advantage of it, and try to help just navigate that a little bit better. Because a lot of times when we ask about something, some treatment or some therapy, or something that might be beneficial to us, well, there's no research that supports it yet, and so we get this answer of, well, we don't have the research that supports that. But at the same time, it's like, yeah. But we have a gap in research and funding.
So what do we do in the meantime? Because you have a lot of people now who see this community that has money and has a desire to fix things better, feel better, and so it's a very vulnerable place for our community to be. I want to really push some of our medical professionals to really partner with their patients, and really just try to understand how to support them better, how to give them some better tools to navigate some of that. Because I think there's a lot of questions, I mean, I don't know, you see it on social media, I'll get all of these supplements, or oh, melted lipedema fat. And I'm like, well, I see that, and I recognize that. That's ridiculous. But I also would think five years ago before I knew about all of this, or when I first knew about it and I was in pain and was desperate, I might have tried it. If you want an answer, you need an answer. You're not feeling great. You're willing to try things. So I'm going to talk a little bit about that just to kind of help think contextualize some of what we go through, because we're navigating a lot of this on our own. I'm fortunate that I've got a nice medical team that I've put together after seeing a lot of doctors and specialists, and so they're partners, right? We collaborate, we work together to come up with things, to try safe ways to do it. Not everybody's that fortunate, so how do we help people who maybe don't have that? And maybe guide them a little bit on that.
Donna Piper: Because there are doctors that know about it, and then areas of people that maybe you live outside of an area that your closest doctor, or MLD, or CLT, and all these acronyms, you're like, what are they? What will really help in a different vibe? There's so many things. When she presents, is that going to be recorded? Are you going to be able to have it available for people if they want to listen?
Hiba Hamati: I think it is available much later after the fact.
Donna Piper: Where do people find you? Where do you like to hang out? Or if anyone has questions about what they really are, want to pick your brain about something, where--
Hiba Hamati: The best place to find me is on Instagram. That's where I spend most of my time. On social, at least. So it's the.lipediva, L-I-P-E-D-I-V-A.
Donna Piper: And then we talked a little bit about this before we started recording. But is there any sort of point about your journey, or something you wish you would have known that you would like to impart onto anyone else trying to figure out their lipedema journey? Something that if you would have known like 20, 30 years ago, anything that would just help someone go a little faster along their journey, that after all of your wisdom and all of the tests and tribulations you've gone through.
Hiba Hamati: There's probably two things. One is to trust your instinct. Whenever I talk to patients, all of us always say, I knew something was wrong. I knew something wasn't right. I knew that there was something going on that was being ignored, being dismissed. We know our bodies. We know what is going on. And I think for the people who refuse to take no for an answer, who keep pushing forward, they're the ones that end up with the answers. And I know that that's not everybody's default setting. I definitely wasn't that way for most of my life. This is a new phenomenon for me to just be just, well, not entirely new, but with health. It's been new with health because if I was dismissed, I just assumed that they were right because I was fat, and that was the issue. And no, no, that they were right, and I never pushed back. But honestly, our instinct tells us that something is not right. Our body sounds an alarm bell that something isn't right, and we ignore it for so many years, we ignore it for decades, and it reaches a point where you can't ignore it anymore. So one thing I could say is, don't ignore it if you feel that there's something that you know isn't right. If you feel like there's something else that's going on, push as hard as you can. Thankfully, there's so much available online in terms of knowledge, in terms of just experience, and people sharing what they learned. Don't accept the bare minimum answer of, everything is fine. Your labs are normal. Everything's healthy.
I think one of the best things I heard from a doctor that I saw years ago was, normal isn't optimal. Just because your labs are normal does not mean that your body is functioning optimally. And that really struck a chord with me, because I've always had normal labs. Everything was fine, everything was healthy, and yet my body was just inflamed, in pain. So much going on beneath the surface of these pristine labs, and normal isn't optimal. So pushing back on that. And then the second thing I would say is, since most of us have a very tumultuous history with our body, body dysmorphia is spending the time to reconnect with your body and reconnect with your emotions. We, especially as women, spend so much of our lives pushing things down, ignoring our feelings, trying to be small, trying physically and emotionally. Don't be too hysterical. Don't be too loud. Don't be too emotional. Don't cry about everything. We jam all of this down, and then we end up just completely disconnected from our feelings and from our body. And being able to reconnect that, being able to have a healthy outlet for your emotions of feeling them, of not suppressing them, of not letting them rule you, not letting them completely have control over you, and you know you're ruled by your moods. But just being able to feel all of the feelings, and knowing that that's okay, that is so important, especially as you go through this journey, because this is such a rocky road.
Let's just be honest, it's such a rocky road. You get the diagnosis, you're happy and you're glad that somebody has finally heard you and acknowledged, but then the reality and the heaviness of what that answer hits you, and that's another wave of tears and crying because it's not an easy road. Chronic Illness of any kind is very, very difficult to manage. Especially for us when we have so many other comorbidities that come with it, right? So it's not just the lipedema that you're trying to manage, it's all of those EDS, MCAS, POTS and all of the others, and each thing has its own impact on you. It's a lot to handle. So really trying to anchor and ground your body and your emotions, I think it's so critical. That works for me, honestly, no longer being at war with my body, I think that's probably getting to that place. So for most of my life, because I have just spent so much time trying to make my body smaller, by any means necessary, getting to a place where I have a healthy relationship, I don't know that we're in total self love. My body is amazing in every way, but I do have flashes now where I'm just like, you know what? My body is pretty amazing. I tried to destroy it for decades. All of these other comorbidities were helping me try to destroy it too, and it kept going. And not only did it keep going, it's healthy and it's strong. And despite everything that I've put it through, and everything it goes through biologically, it's doing a pretty good job. So having some appreciation for that, for sure.
Donna Piper: Oh, that's beautiful. That's a beautiful ending. And what wise words on all of that. And the reality of maybe you don't love it, but you have a different appreciation, is the first step to that road, because you can't go from hating to loving. And yeah, anyone says you can.
Hiba Hamati: There's some steps along the way. My goal was just neutrality. I don't hate it, I don't love it. It's just existing if we can just get to that place. But I got there. And then once I was there, I was like, but you know what? It's done a pretty good job. Look at everything that it's been through just in the last five years, and it's still getting stronger every day, even though I'm getting older. All of these things, it's very, very easy to just look at what isn't the way you want it to be, but forcing yourself to stop and look. Look at what it has done? I mean, the things that it has done to protect itself, to protect me, to keep me healthy. I'm down almost 100 pounds since the beginning of all of this, and my blood work is the same. My doctor just doesn't understand how my blood works. Really hasn't changed much, even though I've lost almost 100 pounds. It's like, how amazing that even at that heavier weight, it still kept my kidney safe, my liver safe, my heart was fine. I didn't have high blood pressure. I didn't have all of the typical obesity markers. I didn't have those. That's pretty incredible when you think about your body carrying all of that excess weight and still functioning normally, that's phenomenal to me. So my appreciation for my body has shifted quite a bit, so I'm very thankful.
Donna Piper: I am grateful that you have done all this research to fill in the gaps, to look at things that are missing, in which you know might be a lot. But at least you have the energy now to go and travel again, go to Rome to present. Maybe this is me assuming, but maybe before you present, maybe you might have different things that might go on about like, not just the words you're saying, but your physical body up in front of people. I know I do. Even if I'm really good at a topic, to put myself out there so people could, quote, unquote, judge me, I would freak out. It didn't matter what I was going to say. It was like, oh, my God, they're not going to listen to me if I'm not thin. All these dumb things. But they're real because it prevented me. And now, it sounds like you're going parasailing. Your mental and physical state, and your health, the pain, because again, the pain, which is invisible, and the heaviness in the legs, there's so much that people don't understand that's unseen, that is really, I mean, of course, we're talking about esthetics, but it's really the things you can't see that is way more painful and debilitating because your body has to go through all these things just to kind of not be swollen. And that has shifted. And along with it, your mental health has shifted, and you found somatic trauma work to be highly beneficial, which is amazing. And I'm also biased because I was a trauma therapist. So hearing that unsolicited--
Hiba Hamati: Truly life changing when you just realize how much you have stored in your body, how much you internalize, how much the stress, how much the anxiety just resides in your being, it's amazing when you start to release it. After I come back from surgery, we'll do a session just to get out the trauma from surgery, just discharging that trauma, and just getting it out of there, because it's a lot like that. Surgery is no joke. Your body is being ripped out of you. It's not a cutesy little anything. If you've seen the videos of it, and not to scare anybody from doing it, I'm like, this is probably not the most helpful thing for you to hear before your first surgery. But let's be honest, it's not just a quick little esthetic procedure that you go into a clinic and leave, and you're fine. It's intensive and it's traumatic. It traumatized your body.
Donna Piper: Your body has to figure out how to reconnect itself. There's nerve ending, there's blood, there's tissue. The diseased fat of it is gone, which is good. But then it has to learn how to rewire itself, and you have to learn how to rewire yourself. It's quite significant. I think anyone that wants to do surgery should do it. If you're interested, look into it, do all the things. If you don't want to do surgery, cool, that's you. But for me, surgery is even knowing all of the things. I've seen all the gross videos, but I'm just like, I want to be able to move. And there's certain things in my quality of life that is diminished, that I miss, that I may not get back, but I don't want this to be the thing that stops me from it, for sure. So you are very inspiring about all of the different ways to do it, and also to be an advocate. Turn your rage into something to help, turn your pain or your disillusion into something that maybe is going to benefit someone else means putting meaning towards our life too. Also is when you heal your trauma having a meaning.
Hiba Hamati: Yeah. I had this conversation just a couple of weeks ago because somebody reached out who had had surgery, and she was talking about the post op emotional roller coaster. And so I was just sharing a couple of things with her, and just that conversation, and just the back and forth of it. Knowing that she just felt better, and that she was worried, or thinking that she was the only one feeling this way, or worried that maybe it's not as bad as I think it is, or maybe I'm just overreacting. And so giving somebody that reassurance that, no, you're not overreacting, and this is normal to feel this way. This is common after surgery. That reassurance, to me, just makes the pain and the anger just die down a little because all of that pain and suffering that I felt was needless. Got me here to be able to help somebody else to not feel this way. So being able to have a purpose, being able to turn that pain into something helpful really makes it feel less cruel. Because it feels cruel, honestly, to have gone through this for so long. To have suffered, to feel so much of my life was stolen by this disease in so many different ways, and so now with each interaction like that, I feel like I'm stealing part of it back. It's like, everything that you took from me, I am clawing and getting every last bit of it back. I'm giving it to other people, and I'm helping other people. Because then, it doesn't feel like it's in vain, it doesn't feel like it's cruel, it doesn't feel like it's needless because I needed to get here to be able to do that. So it's all about the reframing.
Donna Piper: It's so beautiful. It's very powerful. And those words are very powerful because it's not about enduring something. It's really about like, okay, this is my situation, acceptance, forgiveness and really okay, this is my life. And all these things are collectively a part of my truth. I don't have to pick one or the other. It could be messy and raw, and then that makes the life much more exciting and living> And the pain, quote, unquote, worth it. Because why else go through it unless you can produce something out? It's like an oyster, right? What a pearl is, is an irritant that's a grain. And this is kind of your grain. And in the end, you're in an area that's needed for all this advocacy and voice in your truth, because the numbers keep changing. But yeah, over 70 million people have some dysautonomia right now. In lipedema, one in nine women have it. So that's a little bit more than the cancer statistics as well. So it's super common, super prevalent. People don't know how they have the words to define it yet, and that's a beautiful thing that you're doing is defining the words so people can have conversations, so thank you again. I loved our conversation. We're gonna have to have many more, and I'll put all the links to how to find you in our show notes. I hope you have a beautiful rest of your day. Thanks everyone for listening. And if you have any comments or questions, please let us know.
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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.
