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Patient Stories, Podcast

Life with Fibromyalgia, Migraine & More: Episode 52 of Arthritis Life Podcast

December 10, 2021
49 min read
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Natalie van Scheltinga shares how she copes with fatigue from fibromyalgia and other conditions. Natalie & Cheryl discuss the importance of community, humor and storytelling when navigating life with chronic illnesses.

Summary:

Natalie van Scheltinga shares how she copes with fatigue from fibromyalgia and other conditions. Natalie & Cheryl discuss the importance of community, humor and storytelling when navigating life with chronic illnesses. They also discuss how they navigate being chronically ill entrepreneurs and their tips for coping with negative feedback in the online space.

Episode at a glance:

  • Natalie’s diagnosis stories for fibromyalgia, migraine, celiac, cold urticaria, Hashimoto’s, and other conditions
  • What does fibromyalgia feel like?
  • Cheryl & Natalie discuss how useful the “faulty battery charger” metaphor is for explaining fatigue
  • How Natalie uses humor to cope with her chronic illnesses, and how that led her to create funny T-shirts and ultimately the Unchargeables community
  • Natalie’s tips for making invisible illness more visible (including how she formed the “Chargimals” plushies and wrote books to spread awareness)
  • Cheryl & Natalie discuss the value of using entertainment, storytelling and fun to educate people about disabilities
  • How Natalie deals with negative feedback on social media
  • How Cheryl & Natalie navigate being entrepreneurs with chronic illness
  • Natalie’s advice for newly diagnosed patients with any chronic health condition

Speaker Bios:

Natalie van Scheltinga is a chronically ill online entrepreneur, living her best life despite all the health challenges. She lives with Fibromyalgia, Hashimoto’s disease, and a bunch of other conditions ever since she was a young girl. She lives on a sunny island with her family and pets. 

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Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode Sponsor

Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis. 

Episode links:

Join the waitlist for Rheum to THRIVE,  6-month education and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. The next group starts in Spring 2022!

Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis. 

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or 

Treatment.

Full Episode Transcript:

Interview between Speaker 1 (Cheryl Crow) and Speaker 2 (Natalie)

[Introductory music]

Hi! My name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks, and how to respond when people say, “You don’t look sick”, stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness — no topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started. 

Cheryl: I’m so excited to have Natalie here today. Welcome to the Arthritis Life Podcast! 

Natalie:   Hello! 

Cheryl: Can you just start off by telling the audience a little bit of the basics about yourself, like where you’re from and where you live? 

Natalie:   Okay, so my name is Natalie. I’m born and raised in Amsterdam, but I actually now live on the Canary Islands. I moved here almost seven years ago, in a few weeks it’s going to be seven years, mainly for my health to be honest because I’m allergic to the cold. And I have fibromyalgia. So, I just feel way better in a warmer but stable climate. Like it doesn’t get extremely hot here either, so that works.

Cheryl: That sounds great. I kind of want to join you. And yeah, I know we could take a whole episode talking about like our diagnoses journeys and how easy or difficult they were. But can you explain a little bit about your different health conditions, as most people who come on the Arthritis Life Podcast have a form of arthritis, but many of them also have fibromyalgia or other concurrent conditions that can cause chronic pain. So, can you tell us whatever you’re comfortable sharing with the audience?

Natalie:   Yeah, I’ll try and keep it short. I have made lots of videos about this because there’s so much to tell. In short, so my cold urticaria, I did not know what it was. I didn’t figure out until after I actually move here that that’s what was triggering a lot of things. My fibromyalgia was also not initially — none of my conditions were initially diagnosed by doctors. Like, zero of them. The fibromyalgia one, my friend told me that her friend was diagnosed with fibromyalgia. I never heard of it before. She sent me this website with a list of symptoms. She’s like, “It kind of sounds like what you always say,” so I looked into it, and I was already going to physical therapy regularly. And he was like, “Well, it can definitely be this. I’m not allowed to diagnose you. But let’s treat you as if it is fibromyalgia while you go and get your diagnosis.” Well, it took another like 10 years to officially get diagnosed, but I was already being treated as if it was fibromyalgia so that really helped. As I said, my cold urticaria actually was an interesting one because I started my community, The Unchargeables, years ago. And way in the beginning, it was only about fibromyalgia because I thought that was the only thing that I lived with. But then I started talking to people and people had all these different health issues. And I’m like, you know what? I’m gonna dive into other health conditions for the sake of the community. The more that I was reading, the more I’m like, “Wow, this kind of sounds as what I have!”

Cheryl: Oh, wow. No, I had that too, like Reynaud syndrome. I thought everyone’s fingers just totally went, you know, lost circulation and got white. And then I found out, oh, that’s a syndrome. You know, so, yeah, that’s fascinating. So, you started your community to be just about fibromyalgia and then expanded it and realized that you had — it’s very uncommon to have only one diagnosis when you get into the kind of chronic pain world so, and I know that you also have migraine as well, right? 

Natalie:   Yes. 

Cheryl: I’m sorry. That’s something that I’ve been learning a lot more about lately because I didn’t know it actually is more common in the rheumatic disease community as well to have migraine which is a neurological disease, you know. But I was going to ask, can you explain to people who might not have heard of fibromyalgia before or know, “Oh, fibromyalgia, something to do with pain,” can you explain a little bit what does fibromyalgia feel like, what are some of the symptoms of it for you?

Natalie:   I have got a lot of conditions all at the same time so I’m never really sure which symptom goes with what. But as far as my fibromyalgia which is almost in remission now that I’ve moved here, but before it was really stabbing pain, burning pain. When I was younger, they told me I had growing pains. It never went away. Like, still experiencing those from time to time, like muscle aches that just don’t go away. And especially when you wake up in the morning, just being super stiff. Everything hurts and you really need to like warm up your body before you can move properly and the pain goes down a little bit. So, those are my main fibro — were, I don’t have that anymore — were my main fibro symptoms.

Cheryl: Oh, that’s really helpful. And what about fatigue? I’m curious, did you have — has your fatigue gotten better since you moved?

Natalie:   Well, no, my fatigue wasn’t really bad. Actually, my pain was really bad and that I was stiff and my joints was kind of blocked. I’m also hypermobile, so that doesn’t help. My fatigue is really bad because I also have Hashimotos disease, which is an autoimmune disease of the thyroid, and my body doesn’t produce enough thyroid hormones so I take them in, you know, pills. And most of my fatigue really comes from from that.

Cheryl: Okay. And I really resonate with what you said about never knowing exactly what symptoms. From what I have the same thing, especially if you’ve also had like an injury on top of a chronic pain condition. Like I hurt, injured my thumb some years ago, so there’s a little bit of a different kind of pain from that on top of the rheumatoid arthritis pain. And it’s very hard to know like, what’s causing what. And well, I wanted, I was trying to have a clever segue when I mentioned fatigue into your Unchargeables account. I love the name, Unchargeables. And I know that ‘charge’, when we say charge, we’re kind of referring to a battery metaphor. Can you explain a little bit? Why did you choose the name Unchargeables for your account and how that led to the Chargimals today?

Natalie:   Okay, so about seven years ago, a few months after I moved to the Canary Islands, I was trying to sell T-shirts online to make some money and it wasn’t working. Like, I was trying to send — sorry, to sell mom shirts, dog shirts, you know, nursing. I don’t even have anything to do with nursing. One of my friends, he’s very good at selling T-shirts. And I’m like, “Can you give me some advice, please?” And he’s like, “You have to sell something you’re really good at. What are you really good at?” and I responded, “Being sick? I don’t know.” And he’s like, “Okay, so make T-shirts about being sick.” I thought it was insane. I thought he was joking. And he was dead serious. He’s like, “No, make T-shirts about being sick.” I’m like, who’s gonna wear a T-shirt saying ‘I’m sick’? No! 

Cheryl: Right, right. 

Natalie:   Like my coping mechanism is kind of like humor and sarcasm. So, I tried to find my way and that is how I started my page. So, I started on Facebook with The Unchargeables page. It is, I think, maybe the word kind of came because I sort of translated it from Dutch because if you cannot be charged, you are unchargeable. And we as a group, then we are The Unchargeables. So then, yeah, I think that’s how it made sense to me.

Cheryl: Well, I love it. And I think what you mentioned earlier is so fascinating, this whole idea of like, identity, right? And identifying as a disabled person or person with a disability or a person with arthritis, in my case. Sometimes at first people go through a stage of denial, which is totally normal, you know. 

Natalie:   Definitely.

Cheryl: And we can go through phases up and down of denial and grief and acceptance, for sure. But, you know, there’s this empowerment that can come from like, quote-unquote, ‘taking back control of the narrative’ saying like, “Yeah, like I’m unchargeable, you know, this is who — and I’m part of a community. I’m not alone. I’m not the only one,” you know. And so I love that at first, you were like, this is wacky, like no one’s gonna buy a T-shirt. And then, but people obviously did because you’ve been selling T-shirts about chronic illness, and that have — that aren’t just like, ‘I’m sad, because I have fibromyalgia’. Of course, it’s all, obviously we all do get sad and we want to validate those feelings. But there’s something about humor. Again, I’m rambling here, but the humor can help you elevate over your situation. That’s what I find at least. I know you have some really funny videos on your TikTok and your social media too. Do you find humor like therapeutic for you?

Natalie:   Yes. I always say it’s better to laugh than to cry. There’s a time and a place for crying as well, but you cannot get stuck in the crying and being sad. Like, that would be my whole life then. So yeah, I’m like, let’s just laugh about it. Like me and my closest friends, if something went terribly wrong, we would find something funny in it and just laugh our asses off and it makes you feel better, even though it still went completely wrong and maybe something terrible happened, but you know, you can kind of laugh yourself out of that feeling.

Cheryl: No, I love this quote from Viktor Frankl. He’s actually a Viennese psychotherapist who was in an internment camp during the Holocaust, so he wrote a book called ‘Man’s Search for Meaning’. And he said, and I don’t know why I’ve always remembered this, but I looked it up just to make sure I don’t butcher it is, “Humor is another of the souls weapons in the fight for self-preservation,” I think even somebody who’s been — yeah, somebody who has been to the Holocaust is saying, like, you know, don’t knock humor as like a coping mechanism. Sorry, we weren’t even planning on like talking about humor, but it just, I think it’s —

Natalie:   Well, there’s two things I want to say first of all, the Tie Tok I only started like last spring because I kept getting banned from the other social media. So I’m like, okay, I’ll move to freaking Tik Tok. I’ve been banned from Facebook, from Instagram, from Twitter, I’m back on all of them with new accounts. And anyway, so that’s why I went to Tik Tok and I was always thinking, how can I make videos about what I do? Because we make these inspirational meme types of texts that people can relate to. For example, like ‘My fatigue feels like…’ and then we ask the community what it feels like to them, and then we make these meme images out of their responses. And then I was like, okay, let me just try sort of talking to myself in my authentic humor sarcasm way. It’s like how I talk to my mom and my sister. And the first video I posted got like 25,000 views in a day and I like, whoa. I did not think this out. Like, my hair and my face and my clothes were like in my pajamas. I had a terrible background; I didn’t think anybody would see it because I didn’t have any followers. I think I had like five. I’m like, oh, my gosh, okay.

Cheryl: Oh, my gosh. But that’s amazing, the response, that the audience tells you what they want more of, right?

Natalie:   So, I was kind of like, okay, I have to like strip it down, literally, to when I’m in a conversation with my friends or with my mom, then I’ll say something that I’m like, “I need to write this down. This can be a video,” or when I think something when I’m in bed, and I really want to clean my room or whatever. And I have this internal struggle. I’m like, “Oh, I need to write this down. Then I’ll make a video about that because I’m sure other people feel that too.” So, I just tried to strip it down as much as possible. And people are reacting to it.

Cheryl: Yeah, and it’s really amazing what you can do in 15 seconds or 30 seconds or now you know, 60 seconds and up to three minutes on Tik Tok. But like it’s funny, because when I started in 2019 making videos about chronic illness and life hacks and I would do these like 8 to 10 minute videos on one life hack topic. Like, I did an 8 minute video on different travel coffee mugs for arthritis, you know, how arthritis-friendly are they to take on the top and how are arthritis-friendly are they to clean and and now I’m doing the same concept but trying to fit it all into 15 or 30 seconds. It’s really hard. It’s actually easy to like ramble for 10 minutes versus like making a really condensed video. But people love it. 

Natalie:   I have to say that I use Tik Tok to like practice my elevator pitch for the Chargimals.

Cheryl: That’s great. Yeah. Okay. And so, before we go into the Chargimals actually, let’s talk about — so what what do you like about the term, or can you explain the term ‘Chargi’ to the audience and like, how, what does the battery charger metaphor mean for you as somebody living with this?

Natalie:   Okay, so the term ‘Chargi’ it was made up by the community, they started referring to each other as ‘Chargis’, because we are all in the Unchargeables and one of the most common used terms is ‘Spoony’. So in our community, people would call each other ‘Chargi’. And that so that kind of just organically happened. But I ran with it, because why not? 

Cheryl: Yeah. 

Natalie:   And the battery analogy, this is actually something that really happened. So, I was sleeping the entire night. And in the morning, I woke up and I had my phone, but the cable of my charger was broken. So, sometimes it would charge all the way all night. And sometimes it would just charge like halfway because the cable was kinda, yeah, just not connecting correctly. So, I woke up in the morning, my phone was only charged at 40%. I turned to my partner and I’m kind of like, “This charger is like me, you never know what you’re going to get in the morning.” And I wrote a blog about it. And that’s it.

Cheryl: I love it. I think it’s so — it’s really a resonant metaphor for me because it does have to directly to do with energy, right? And also, like, if you don’t have a faulty charger, people would say things like, you know, able-bodied people are like, “Oh, well you just need to charge”, “Well, you just need to do this,” or, “You just need to do that,” and it’s like not realizing that like — 

Natalie: “Exercise, you’ll get energy.” 

Cheryl: Yeah, yeah. Weirdly enough for rheumatoid arthritis. The evidence does show that but not for every condition, sadly.

Natalie:   Well, it depends because a lot of people when I say exercise, they think pumping weights at the gym or running a marathon. Like exercise, I have taught like these gentle exercise classes for my community where when I was rehabilitating from my umpteenth, like, whatever injury, I didn’t have any strength in my arm so the only thing that my physical therapist had me do is hold my arms up for 15 seconds. That was it. That is exercise. If that’s where you’re at, that is your exercise, and you’ll get better and you can do more.

Cheryl: Oh, such a — I mean, it’s so funny you said that, because I actually will have people do that, like put your arms out and just try to hold them if you can for like a minute and see the effect of gravity. I mean, and your body has mass. So, even regardless of how your, what your weight, your body weight is, when you have to hold your body up, it takes some energy. And if you have more muscle, you will move more efficiently. But it’s a vicious cycle either way, right? If you’re weak, it becomes harder to move. And so anyway, but yeah, the ‘Chargi’ term is also great, because one of the kind of invisible aspects of living with a condition that causes pain and fatigue is that lack of energy. And it’s hard. Like, I think people can — even though pain is invisible — people can kind of picture what pain feels like, you know, even if it’s a wrong picture, but kind of they can have a concept of it. But the fatigue, like the level of fatigue that some of us go through with these conditions, is harder for people to kind of get. Like, “Why don’t you just like push through it?” you know? So you can say, well, it’s like my battery’s not charged, like it can’t. So, I love that. I love that. And then how did you — okay, so then how did that — so you have the Unchargeable community across all these different social media platforms and Patreon and other places, and then you have, you created the Chargimals. Can you share a little bit about what the Chargimals are? And you can show pictures for those of you watching the video version, or show us the examples.

Natalie:   I started making them into plushies. So, the Chargimals are little monsters that each present a physical or mental health condition. This is actually the first one we made. This is Foggy. She is a little pink brain with clouds around her and she represents brain fog. This came about in our Facebook group way back when Pokemon Go was a thing. When it just came out, there was — the disabled community was like we cannot walk. We cannot physically go out and catch these Pokemon. So, there were these cheats for disabled people that you had to prove to the company you were disabled, and then the Pokemon would come into your house and they would come to you. And somebody — it was a whole thread in our group — and somebody commented, “Somebody should make chronic illness monsters.” I’m like, somebody? That is me. Like, I will do this. This is probably four to five years ago that that comment was made. It took some time to get them where they are. So, I had, I think, two; the brain fog one and the fibromyalgia one because right, that was what I only what I thought I had. And they were just images, and I had them for a few years. I think we had six different ones at some point. And I was like, the people who understand what they’re about buy the T-shirts with the images on them. Other people don’t. So, I really need to kind of give them their own personality and make them alive a little bit more. But the more people saw these monsters, the more they wanted one for their condition. So, we got more and more, but there were still no real personalities behind them. Then I asked in my community, “Is somebody good at writing? Can somebody kind of like help me get started?” And that’s how I got to know my now co-writer, we have actually written and published a book together. The Chargimals about anxiety and mobility aids. And she was like, “You know, this is something I’ve always wanted to do. I’m kind of creative and good at writing. Let’s just try it out.” So, we were just, just between the two of us, kind of writing and sending emailing things back and forth. And after a year I was like, “Okay, I think we can release this and we’ll just grow and learn as we go.”

Cheryl: That is incredible. What’s the name of the book again?

Natalie:   It’s called ‘Donny and the three strange Normberts’. Donny is the MS Chargimal. He walks with a cane because he has wibbly wobbly legs, but one morning he gets out of bed and he wants to use his cane and his cane breaks. So, he goes to the center of ChargiVille, which is their world, and he sees these three strange Normberts. Normberts are normal healthy people that don’t live with health conditions. They have these weird yellow walking bikes. And that’s when they learn about all these different mobility aids.

Cheryl: I love that. It’s so creative; it’s so great. And that you’re just like, like, I’m seeing a little common thread through here, which is that you’re weaving in to your business the personal experiences you’ve had, and just what the community is telling you, you know, and it’s really, I think that’s a really great way, a great way to do it. And what have been some of the responses to the plushies and to the Chargimals like metaphors. They’re not really metaphor. I mean, I guess, or characters. That’s what I meant to say.

Natalie:   Well, all the responses have been amazing. Like the negative responses I’ve gotten are like, “You don’t have my monster. I want it now.” 

Cheryl: Yeah, yeah. 

Natalie:   Like, it’s not just an image, they have a character, they have a way of speaking, everybody has their own accent, they have their own friends, we have 44 Chargimals now. And the whole world is growing. We have ChargiVille, is the world where they live. We have the main square, which is Battery Square. And they have charging benches, so you can sit on them, and you will recharge your energy. But it doesn’t work for diabetes, though. You cannot recharge your insulin. This is coming in the new book which we’re writing now.

Cheryl: Oh, that’s interesting. Oh, my gosh. That’s so great. I can see like a video game being made, or kind of like Animal Crossing or something. I don’t know.

Natalie:   Well, what I’ve been actually working on an app a few years ago. But like creating an app is a whole different world and I’m already running quite a big community, so that was too much so I stopped that. But what did I want to say? This is brain fog. It just kind of [poof]. All gone.

Cheryl: No, that’s me like every episode. I’ll just be like, what was I gonna say?

Natalie:   Oh, we were talking about — oh, video game. I know what I wanted to say. In my mind, I see it like a Netflix show, like a children’s cartoon. Like, I know what it looks like.

Cheryl: Yeah. I love it. No. And I think like finding ways to make disability representation, disability education, entertaining and accessible is just so important. And I think a lot of times people are worried about like offending someone or like, “Oh, if I—” I would imagine someone saying something like, you know, “Oh, if I make a plushie out of that, are people going to think that it’s like minimizing the seriousness,” or whatever. But it’s like, our basic human — the way I see it, no one asked, but this is my podcast so I just say whatever I’m thinking — is that like, people want, people love stories. You know, humans have told stories. That’s like, people theorize that like one of the reasons we developed language was to share our stories, you know, and people connect to things that are cute and fun. And not just again, like it is, I mean, I want to honor the seriousness of our conditions and how difficult life can be. But also, I love that you bring this kind of entertainment element to it. So, it’s not just like, “Let me talk about how terrible every second of my life is,” you know what I mean? Is there a point in there somewhere?

Natalie:   Yeah, it’s like in the middle of the book, the main character is so exhausted, he cannot go on. And he goes home and he’s not mentioned for the whole second half of the story. He missed it because he’s not feeling well.

Cheryl: Oh, that’s so — it’s like, “Show, don’t tell” is one of the things like my — it had gotten grilled in me from like my ninth-grade English teacher onward, you know. Instead of telling like, “My condition can cause fatigue,” showing, in a story, showing the person what’s the effect of fatigue, they miss out. That’s like, really powerful more so than just being didactic about it. So, I love it. So, you mentioned you have a Chargimal about — the Chargimal character, a little monster — for MS, for diabetes, and brain fog. What are some of the other ones you have?

Natalie:   I’ve got a whole bunch and I don’t know if I’m gonna remember them all. I have a little unicorn for being misdiagnosed. I’m going to make her the next plushie next year by the way. We’ve got chronic pain, gastroparesis, Chiari malformation, we’ve got lupus.

Cheryl: So, who drew these? Did you draw these? They’re so cute.

Natalie:   I have an illustrator. I have an illustrator, he draws these, most of these. Some of them are old so they are from an old designer. This is for PCOS.

Cheryl: Oh, right, polycystic ovarian syndrome, for those of you who don’t know. So, you’ve really expanded — like yeah, it’s such a fascinating evolution that you started with fibromyalgia and then now it’s been expanded to so many different chronic conditions. And I loved on your website, I’m going to quote you to you, you said, quote, “My main goal is to make the invisible visible by creating these products that show on the outside how you feel inside and to support others going through the same thing and let them know that they’re not alone.” That was so beautiful. 

Natalie:   Like, so that’s how I feel. 

Cheryl: Yeah. And so, you said that most of the responses have been, or the responses have all been positive. Is there any anything more you want to share about the response to the Chargimals or any of your work, I guess? It’s kind of like, brag about yourself. No. Brag about the impact of what you’ve done on the community.

Natalie:   To me, it’s kind of hard to know the impact, you know. You can have a lot of people telling you, “Oh, this is so amazing,” And you’re like, I don’t know. I’m just doing whatever I’m thinking and however I feel and what I want other people to understand. So they’re like, “You do so much for other people.” I’m like, no, actually, it’s the other way around. I do everything that I need. But I share it so others can use it, too. So actually, it’s very self-centered.

Cheryl: Well, mutually beneficial. Yeah.

Natalie Exactly, exactly.

Cheryl: It’s the same. Yeah, I feel that way in the sense that like, I feel the way that I learn a lot from the community I’m teach — I might be teaching about something specific, but then I get a comment like, “Hey, have you ever thought about this,” or, “I do it this way.” And then you learn to —

Natalie:   Always stay open, always listen to others, you know, that is just — that it’s just important to stay open and never think you know it all.

Cheryl: Right. Oh, so true. It’s like the sign of an expert is somebody who’s willing to say you know, the limits of their knowledge and that they don’t know, they don’t know something. And I guess most —

Natalie:   Sorry, two Chargimals I forgot to mention which I should mention in this podcast. We have one for arthritis. We have one for rheumatoid arthritis. And we have one for psoriatic arthritis. That’s it. Psoriatic arthritis. So, we have three.

Cheryl: Oh, that’s great. Oh, good. I was — yeah, I was that flitted for my brain and then just flitted right out. Yeah, thank you for specifying that. I think it would be great. I mean, it’s not just for children. But I do think it would be great for like a newly diagnosed you know, child as well to feel that kind of again, making this invisible, often invisible condition, more concrete and something you can share, you know, to show friends and family and teachers and others. So, I really love it. And then, so both of us do a lot of social media video and we’ve already kind of touched on social media before. But I’m just curious, like, what of some of the responses you’ve gotten to your videos? And what are some of the things that you, I guess, highlights and lowlights, because I know social media is a double-edged sword, right? It’s like so many good, so many bad things. 

Natalie:   Oh, yes. Literally this morning, I was like having a whole discussion with somebody who didn’t agree with what I said publicly. And like, I really don’t care about your opinion, because this is my personal experience. I am a very like, secure person. Some people may perceive me as arrogant because I know what I want and I’m not scared to say so and nobody’s going to sway my opinion. So, I was actually saying on Tik Tok, I posted a video yesterday that also like 30,000 people saw. It’s always the videos that you don’t think are going to be interesting that then blow up. I’m like, this one? 

Cheryl: Completely.

Natalie:   Okay, whatever. And I say in there that I had all these symptoms and you know, they weren’t diagnosed, oldest story in the book. And in the end, it turned out I had Hashimotos disease and also H.Pylori overgrowth, is bacterial overgrowth, but it was so bad that it almost killed me. And by the time they found it out, I got the triple therapy with three different antibiotics you have to take for three weeks. That was so hard on my body. The first night I thought it was going to die. Literally, I thought I was going to die. It was super bad. And it didn’t completely clear the H.Pylori and then my nurse practitioner, she put me on essential oils. And in the end, the essential oils — of course, the antibiotics helped, but it didn’t completely cure me and then the end, the essential oils did. And I mentioned the brand and they were like this brand is an MLM. I’m like, I don’t sell this brand. Like, you cannot buy it from me. I’m not trying to promote anything. I’m just telling you what I did and which brand I used. If you don’t want to use it, that’s completely fine. And they’re like, you don’t know what they did. So, I thought you know, always wanting to learn, maybe this company did something really bad that I didn’t know about and now I don’t want to support them. So I’m like, “I’m sorry. Like, what did they do?” And she’s like, “No, they’re saying they can cure people. And it’s an MLM,” I’m like, okay, that’s not a debate or a discussion. It worked for me.

Cheryl: What, you’re sharing your personal — yeah, you’re not saying like, “Because it worked for me you all need to go take it,” like you’re just sharing what worked for you. Yeah.

Natalie:   Exactly. And I also mentioned that. I’m like, just mentioning what worked for me. If it doesn’t work for you, that’s great. If you don’t like the company, by all means don’t use it. You cannot buy this stuff from me. Well, you probably could, because I have an account. But I have no interest in selling. This is not what I do. I’ve no interest in selling this. People have asked me to buy this. I’m like, I don’t, that’s not what I do. I don’t sell oils. Oh, this person was really — and we were like messaging back-and-forth. And in the end, right before hopping onto this call, I made a video. So, let’s see what the reaction is gonna be when I come back because it was a little bit sassy.

Cheryl: I know. That’s something that I am like a recovering people pleaser, but still definitely a people pleaser. So yeah, I think that’s been —

Natalie:   I don’t suffer from that. 

Cheryl: I know, I’m like, tell me your secret. But I also like, yeah, everyone’s personalities are different, you know, and you can even tell it in childhood, some people care more about what their classmates think of them. And some are just like, I know who I am. And I’m just confident. Like, were you always like that?

Natalie:   Um, to a degree. So, I’ve always been like the ringleader. But when I just started on not only in this community, but before this, I had like an online, how to grow your online presence back in 2013 like company for years, and I was very new. And I did like my first webinar. And some of the big boys from the industry — this was all in Dutch — they took my video, put it on this hate forum. And then all of like the big names, you know, all the people you look up to when you’re in a certain world, were bad mouthing me. And it was like my first webinar, and it really completely crushed me. So, I could have done two things. Again, I could have shrunk in a corner and never showed my face again, which the first day I wanted to do. And then the second day, I’m like, F-you. I’m going to be so big you — okay, so one of the big boys that was bashing me, and he personally doesn’t know that I know this because I was not in this forum. Somebody sent me screenshots. He is the one who helped me set up the T-shirt thing. So, I said ‘friend’, he was just like somebody in the same circle, and he helped me set on this whole thing. And it’s such an internal, like, big win. Maybe I should tell him because we’re good now, I don’t think he knows.

Cheryl: Oh, that’s — well it’s like, let your haters be your motivators. Like, I think.

Natalie:   Exactly. So, I had to really, really get a thick skin and it’s been years of every time somebody puts something, and I’ve had really bad negative things happen online, like extremely. The first time that I had this 3000 People Facebook group, and I put my idea in them that is now called the Mystery Grab Bag. For like 20 something dollars a month, you can subscribe to the shop, and every month you get a surprise product. So, I wanted to launch that. So, before going to bed, I put in this group, I want to make this you know, membership that if you pay 15$ or $20, you get something I wake up to utter chaos. Half of the people unfollowed me because now I’m extorting disabled people. It was an enormous big thing that they made whole hate groups, like don’t follow The Unchargeables.

Cheryl: Because it — was money involved earlier? Was it just the T shirts were the money —?

Natalie:   No, just the T-shirts first and I just wanted to do like a T-shirt membership. But first of all, maybe I didn’t word it well enough. And second of all, people felt left out. So, I put into text like kind of like a VIP section and they’re like, “Oh, very important person, you know, so we’re going to be discarded because we’re poor.” No, that was not what I said. So, throughout all these experiences, you know, it was crushing, but I had to choose every time am I gonna have this break me or am I gonna like rise above make something better? I took a whole year before I launched that, I was so nervous the next time. And the next time people loved it and I sold like 80 memberships. And I’m like, but last year I was crucified for this thing.

Cheryl: That’s, you know, I think — I’ve struggled with this as like, also a chronically ill, you know, entrepreneur. It’s hard when you add money into the mix. You have a platform where you’re providing a lot of free education empowerment, like both of us are doing that part, right. And you have a lot of resources for people and then, you know, free community ways to connect to you online. But then you have a level where people can invest monetarily, and then get more, because, you know, we have — I feel so conflicted sometimes because I’m like, I want on the one hand, I value my time, I value my expertise. And I think that there is a monetary value to some of the products I’ve done. Obviously, that’s why I’m, you know, have a monetary value to them. On the other hand, I do feel like I feel obviously sympathy for people who can’t afford it. And but I think the happy medium is just to provide, you know, like I do provide sometimes, like need-based discounts, you know, right. But you can’t expect everyone to work for free, also. So, I don’t know. It’s hard.

Natalie:   What I have done in that aspect. So, in the beginning, people would ask me, “Oh, this is not a non-profit? It’s a for profit, who’s to profit for it?” Like, me. Me. I’m the good cause, like I’m a disabled single, you know, mom, trying to provide for me who is not getting any disability or government assistance while raising my daughter alone — not anymore, but back then. Like, the profit is for me. If that cause is not good enough, well, take your money to Greenpeace and give it to their CEO, right? This money goes directly to me.

Cheryl: That is, you’re so confident. I’m like, please help me become one of this. No, because you’re worth it. No, it’s true. I kind of touched on this in Episode 50, where I was like, celebrating 50 episodes, and I kind of explained why is Arthritis Life a company, like an LLC, not a non-profit. And, you know, not bashing non-profits at all. But people make a lot of money in non-profits too. It’s not like everyone works for free in non-profits, you know. It’s not so simple to say like, “All non-profits are good. And all companies where people make money are evil,” like, you know, so anyway.

Natalie:   And non-profits are not even pay in taxes. We make money, and we pay our taxes. 

Cheryl: And that, yeah, there’s, I think what’s essential, you mentioned that it’s the tran — there’s a transaction that’s very direct. Like, so for me, I have a support group and educational products that I say, if you want to benefit from this, you give me the money, because I created it, and I facilitate it. And then I provide the service to you. And it’s a one-to-one versus like soliciting donations. It’s not better or worse. It’s just like, people donate, like, you know, for specific events for these foundations. And then pharma companies donate, and then individuals donate, and there’s this big — there’s not a one-to-one relationship, right, between who pays the money and who benefits. And again, obviously, a lot of disabled people cannot afford certain things. And so, that’s where it becomes challenging. But I think for me, it’s like, there is something like when people have skin in the game, like, I’m investing in your program, you know, then they actually they’ve even said that to me, though.

Natalie:   They work harder.

Cheryl: They’re like, I knew I wanted to come to the meetings for Rheum to THRIVE because I knew that I had, like, invested in it. And so, so it’s yeah, and I think, like something that I definitely can tell, I struggle more than you do with wanting everyone to — I just want like gold stars. I want to like put a video out and everyone to be like, “That’s so true. You’re so right.” And then, and then it’s hard. So how, I guess I’m trying to also anticipate like what, how the audience might be feeling. I think a lot of people struggle to take — figure out how to take negative feedback online. You know, like when someone comments. Like, I learned this one the other day, I just shared it to my Insta Stories. It’s just like, maybe you’re doing it wrong. Maybe it’s hard because you’re literally like, maybe it’s hard to use the can opener because you’re doing it wrong. Like, oh, and it couldn’t possibly be my joint condition. It’s probably just that I’m doing it wrong. Yeah, that’s not even a troll. That’s just someone who’s just kind of like, you know. But how do you — do you have any advice for people who are nervous to speak up online or nervous or worried about like negative feedback? Like, how can they be more confident like you?

Natalie:   First of all, you will get negative feedback. 100%. So, if you are not okay with receiving negative feedback, do not put anything out there, because it can be super harsh, and you can get crushed. And I have known people that started things and literally stopped because of the negative backlash. Secondly, you have to be true to yourself. So, if this is 100% true for you, and you are 100% certain that you stand behind this idea, this product, this whatever it can be, then when you get the feedback, to me personally, when I get negative feedback but I don’t feel there’s any truth in it, I don’t really feel affected. But when I feel like there is some truth in it, it hits me to my core. And there was one more thing I wanted to say. If my brain will let me. I got a a good one, and then it went away. Oh, right. I remember. Hurt people hurt people, right?

Cheryl: Yes. 

Natalie:   Sick people are there alone in their bed. Their whole world is social media. They see me go on a hike because, you know, I had that one good day and I posted it. And then I didn’t post anything outside of my bed for three months. And they think that I can do all the things and then I sell a T-shirt. And they’re like, “But you’re not really sick. You look fine. You went on that hike last August. And now you’re trying to sell me these T shirts.” I have learned that the way people react has to do with their situation. It has nothing to do with your situation. Really nothing. And the people that scream the loudest want your stuff the most. It means that they want it but they cannot have it and that makes them upset and they lash out at you.

Cheryl: Yeah, that’s so true. And the quote that comes to mind — I’m like a quote collector. But, you know, I think it’s Eleanor Roosevelt, like, “No one can make you feel inferior without your consent.” 

Natalie:   Exactly.

Cheryl: Like someone’s like —

Natalie:   That’s so good.

Cheryl: Yeah, I love that. I say that to myself all the time. It’s like, you know, I did a jar opener video and someone’s like, “You’re weak,” and I’m just like, okay. Like, your feelings don’t affect me because like, I don’t, yeah, like, I don’t really care. And I never was like, yeah. Well, I’m forty now. Yeah, if I had started that when I was 20, it would have been a lot harder for me, you know.

Natalie:   Oh, yes. I also started in my 30s. Like, I’m turning 39 in a few days, and it’s very much easier to like, take it then in your 20s. Yeah. 

Cheryl: Oh, my gosh, I’m older than you. Sorry, you seem older and wiser than me in my head. I mean, just by like, I thought you were like, a year older than me, because you’re very wise in the world, though. But like, I think, I don’t know if it’s a cultural thing too ‘cause I have two cousins and my aunt who lived in Holland for a long time. And they’re very confident too. So, maybe there’s, I don’t know, but I think it’s more of an individual personality thing. But yeah, I think those are really, really great tips. And, you know, there’s a difference between like, for people who might be wanting to share their voice online, you know, they’re, you know, no one can argue with your story. Your story is your story. They might think that your conclusions that you’re drawing from your story maybe aren’t correct, right? Like, someone might say like, “I did this diet and my symptoms got a lot better.” Like, that’s their story. No one can argue with that, right? But they might then say like, they might draw a conclusion from that, like, “Therefore, if everyone with my condition does this diet, they will all feel better, just like I did.” And like, I as a responder can take issue with the with the conclusion they drew from their story, but I can never argue with their story if that’s their story. You know what I mean? So kind of, in your mind like separating what’s your truth in your story from the conclusions you’re making from it. Like that’s been helpful for me.

Natalie:   People do argue with the story, though.

Cheryl: Oh, yeah. Oh, no. They’ll argue with anything? Yeah. It’s so funny. I know. That’s actually been the best exposure therapy for me because, again, as a people pleaser, I learned really quick I can choose. Yeah, like you said, I can choose. If I know if I want to avoid criticism, if that’s the most important thing, I should do nothing. Like, make no videos and put nothing out there and do nothing. Because, you know, that’s the only way to avoid it. And so, there’s this other great quote — and it’s my last quote I’ll say — but I have it on my Instagram too. Like Elbert Hubbard said like, “To avoid criticism, say nothing, do nothing, be nothing.” And I’m like, the cost even though I’m so driven to have gold stars and like happy feedback and Smiley’s from everyone, it is more important to me to do something meaningful in the world than it is to have positive feedback. And that was a hard thing for me to come to.

Natalie:   It is hard. Like, I sound like it all doesn’t affect me. But of course it does. And specifically in the beginning, it was so much harder than it is now. It’s like you do either grow with thick skin or just fold.

Cheryl: Yeah, and you can also take seasons you know, to come in and out. Like I’ve known people who’ve, they’ve been really active for a while and they said, you know, I needed to step back for the next few months or a year and say like, I need to reconnect with other things in my life, and then they come back with a refreshed perspective. So, there’s many different ways to do it. But before we wrap it up, I wanted to make sure to ask — this is just one of my favorite questions to ask people is, if you have any advice for newly diagnosed people with just any chronic health condition, I was gonna say, you know, it’d be like with your specific conditions or just in general, because that newly diagnosed period can be so rough, right.

Natalie:   So, when you’re searching for a diagnosis, that is all you can see. And you’re like, “When I get my diagnosis, then I’ll get a treatment, and then I’ll feel better,” then you have your diagnosis and maybe there are no treatments, or maybe the treatment they’re prescribing is not helping and you feel lost because you were striving for that goal of being diagnosed. Now you’re diagnosed, and your goal has been lost, and you’re like, “Am I gonna feel like this forever?” It is a very unsettling stage to be newly diagnosed. My advice would be just, you know, feel your feelings, go to support groups, talk with others. And know that acceptance will come. Like, in the years you will learn to live and manage your symptoms, and you will find a way to hopefully feel much better, but if not, just manage it.

Cheryl: Yeah, I love that. I love that. It took me so long to get to the ‘Feel my feeling’ stage, because I was like —

Natalie:   Oh, me too.

Cheryl: It’s like I had this bias towards I only want to feel happy. So, like I need to figure out how to like control my disease so I just feel happy all the time. And it’s like, oh, that’s not sustainable or possible for anyone, regardless if they have a health condition. Like, no one feels happy all the time. 

Natalie:   This is actually how the community grew with me, because right in the beginning, my main thing was getting diagnosed because that’s what was happening in my life. Then I was diagnosed and I was like, okay, so everybody lists their diagnosis, you know, because that’s where I was in my life again. And that’s very much The Unchargeables. The Chargeables is the next step. It’s like, living with your condition in the best possible way. Trying to find inspiration, laughs, entertainment, manage, you know, because that’s where I am at now. So, it kind of evolved with my personal situation.

Cheryl: No, that’s so beautiful. That’s totally, like the way — I’m very visual. So like, the way I see it as it’s like, you’re on this road. That’s like you’re walking on this road that’s like your life path, right. And there’s this giant barrier in the middle of the road. And that’s like your diagnosis initially. And you see it as like, I can’t keep going down the road until I remove this barrier, right. Let’s say the barrier is like, I don’t know, a big fence or something. This is gonna, this metaphor is gonna get really weird. But um, and then you’re like, okay, I have to like chop down the fence. And like, it just keeps growing back. Like, it’s not going away. But then you realize I could just like, carry this fence with me. And so, that’s where the metaphor breaks down. But it’s like, you can take it with you. You’re like, this is part of me, but I can still move down the road with it, you know. I can adjust and adapt, I can create like a cool little backpack that allows me to like carry it, you know. But the more that you see your diagnosis as the enemy, as the thing you need to fight, and that’s like, then you’re missing out. The whole rest of the road is there. That’s like your life, you know? And so, you are missing out on the opportunities that are there with your condition as opposed to just thinking I have to make it go away. You know, so that’s kind of like my rallying cry.

Natalie:   This is why I use the words ‘I live with something’. I can live with fatigue because it’s separate for me. I don’t have fatigue because it cannot go away if I have it. My personal choice of why I changed the wording.

Cheryl: I love it. Yeah, I used to say my tagline was like ‘Learn to live a full life despite arthritis’ and then I’ve changed it to ‘Learn to live a full life with arthritis’. So yeah, we’re like we’re like wordsmiths over here. Yeah, but it’s true the words that we say impact our mental health a lot. So, this is a great note to end on. I’m just really appreciative. I know how extremely busy you are with all of your projects. I really appreciate it. Oh, and I’ll put in the show notes all of your links to your Instagram and Facebook, Tik Tok, and your shop, but can you just tell everyone your handles out loud, or I can say them too if you don’t have them memorized.

Natalie:   Yeah, so it’s all The Unchargeables but it’s written with like E-A- Uncharg-E-A-bles, Unchargeables, so that’s everywhere. And then on Instagram, I am @WeAreTheChargimals because the first one got banned. And on Facebook I am The Chargimals. On TikTok I’m @TheUnchargeablesbyNatalie and on YouTube also The Unchargeables by Natalie.

Cheryl: Awesome. Okay, I will definitely — I’m putting those in the show notes and I just appreciate your time again, thank you so much for coming on the Arthritis Life Podcast!

Natalie:   Thank you for having me!

[Ending music] 

Thank you so much for listening to today’s episode. This episode is brought to you by Rheum to THRIVE, a membership and support community where you’ll learn how to develop your own THRIVE toolbox so you can live a full life despite your rheumatic disease or chronic illness. Learn more in the show notes, or by going to www.myarthritislife.net. You can also connect with me on my social media accounts on Instagram, Facebook, Twitter, and even TikTok. Check out the links in the show notes.