Starting A Nonprofit to Support the Chronic Illness Community

Welcome back to the She's Crafted to Thrive show. I am excited that you're here, and if you are returning because you're a loyal listener, welcome back and thank you so much for your support. And if you're brand new here, welcome! You're a part of a tribe now of women who are sharing their stories, getting real, talking about real life and life and business, including living with a chronic illness. And honestly, that's pretty much where this whole podcast is going to lean so much more into is just dealing with the life hurdles of being imperfect and how we can find our strengths and our superpowers, if you will, in the sense of what we are really good at. And why I'm excited about this episode, because like, let's be real, I'm excited about every episode. The episode that we're having today is featuring Sydney from Chronic Illness Hotline. There are so many different hotlines out there for so many different things, which is amazing. But can you believe with 133 million plus people living with chronic illness in the United States, there isn't a hotline until recently and is being brought to you by another chronic illness warrior woman, Sydney Sinnicks. And I am just so excited for you to hear this conversation where she talks about the reason why she started this nonprofit organization, how running and starting a nonprofit while you have, you know, your own health chronic issues like what that's like, and also doing it for a community of people who can understand and be compassionate. And the other piece to this that I really enjoyed, obviously because, you know, business and creativity and all that kind of stuff like jam really well in my world, is that, you know, even though this is a nonprofit organization, it runs and is a business. There's different tax things you have to be aware of and all that different jazz, but you still need money, you still need people to know that you exist, you still need to do advertising and marketing and all of that jazz. And Sydney really talks about, you know, her experience coming from the teaching world and, you know, jumping into doing this because of her health situation. So I just am so honored that she shared her journey with us and that she started this amazing nonprofit. In the meantime, before you hop into this conversation, I have a request of you. If you have a friend, family member, or someone you know that is living with chronic illness and you're like, I don't ever know what to say to them, If you have seen someone on social media who's like going through the most with chronic illness, you're like, I have no idea what are the resources where to send them. Well, one of them is the Chronic Illness Hotline. You can send them this text message that says, you can also send this in a DM, I'm thinking of you. I saw that you're going through a lot. I just want you to know that you're not alone. You can text CARE, C-A-R-E, to 202-596-6520, which is the Chronic Illness Hotline. It's designed to help people who are living with chronic illness and people on the other end of that phone are, are people who have chronic illness too, can have that compassionate and empathy place. And I'm sure that it would be helpful for them. So definitely show them some love, share that, you know, text message with them. Just tell them text CARE to 202-596-6520 and they will have someone reach out to them and be a safe place for them to share the things that they're going through. All right, without further ado, let's hop into this pre-recorded conversation that I had with Sydney inside of my free private Facebook group, She's Chronically Crafted, so you can hear more about her and this amazing nonprofit. All right, stay tuned. Welcome to She's Crafted to Thrive. I'm your host Nikita Williams, and this show is for all the ladies who are making and creating things that they love. You will hear conversations about the real everyday struggles of juggling life and business while trying to maintain passion and harmony. As women, we have the skill of getting things done, but sometimes we get in our own way. It's here where you'll see that you're not alone. You'll discover that success does not mean perfection. Fear and negative thoughts and challenges are all a part of the journey. And on this podcast, you'll find the inspiration and tools you need to have a life and business that thrives.

This is Sydney. Okay, so like me and her are like in the same tribe, Rising Tide. And that's how we connected. That's like a community for women who are creatives or not even necessarily creatives, just business entrepreneurs who are living with chronic illness. Because I believe the founder of Rising Tide has a chronic illness or one of the co-founders or something like that is deals with that, right?

The founder founded Rising Tide, was doing amazing, and then happened to have a chronic illness. Pop up.

Yeah, yeah. So kind of like a lot of our lives.

Yeah, just when you think you have it all together, there will be a plot twist.

Yes.

Hello.

Yeah, exactly. Yeah, I was thinking about our chat today and I was listening to Amazon Music, and so I did a reel on it because it just hit me. I was like, yeah, these are our lives these days. You go to the doctor's office especially now. I feel like it's probably even worse. I'm glad I'm not where I was in my health a few years ago while COVID is happening.

Oh, me too.

I don't know how I would have coped. I know this is a difficult thing. Like, it was hard coping then. Yeah. But I don't know. I, I even now, it's like a scary thought of trying to go to the doctor's office. If I'm gonna go, should I go? I mean, I haven't even gone to the chiropractor. Like, I'm just like, mm, I don't know. I'll be okay.

Like, hmm, I could possibly die. I will stay inside. Like, and yeah, like the people that are being diagnosed right now or are really in a position where they have to go for infusions or go for treatments, go for surgery, like, oh my, my heart goes out to them because I'm like, I'm good enough. I have been through worse. I am going to just stay home.

Yeah.

You know what?

That's a good point. I remember back in the day when I was getting iron infusions because of of the things that I was going through. And I had to go a lot. And it was in a hospital because they didn't just do that like in a doctor's office. And so not only was it in the hospital, it was in the cancer part of the building. So it was like, one, it was already crazy trauma going in there. Like the first time I went, I don't think I realized that it was going to be in a chemotherapy unit. And I have history, like with my grandparents, they both had cancer. So going in, I just lost it. Like in that moment I lost it.

I was like, oh my God.

Oh my gosh, this is where my life has come at this point. But anyway, this is a really great topic, um, because I think a lot of us need to talk more about like the startup process and dealing with starting up a business or starting up something while you're living with a chronic illness. And specifically, I'm super excited to talk a lot more too about the Chronic Illness Hotline because I think, man, if this was, you know, around when I first started dealing with this, I think we you just didn't know where to go even to find resources to deal with some things, just like doctors or places like that. And so I think it's really great that you're doing it. So with all that intro that wasn't really an intro, we could just gab the whole hour. Please tell us who you are, what you do, and all that jazz, and a little bit about your story.

All right. Hello, everyone. So I am Cindy Sinex, and I am the founder and CEO of the Chronic Illness hotline. And it kind of came out of what Nikita Williams was just saying, which is like, when my health battle began, I didn't know who to turn to, where to go, what to do. You know, like, your doctors and the nursing staff are there to like, this is what we need to keep you alive, to get you back, and goodbye. And there's no emotional kind of help or anything that allows them to spend like a lot of time with you. They're busy, they have appointments, they're running behind to begin with. And your friends and your family if they don't have a chronic illness themselves, they're doing their best to be there for you. But like, you don't know until you experience it. And the most well-meaning friends and family can say things that you're like, that just doesn't help. That actually now makes me mad. I feel more isolated. I feel less supported. And they're trying their best. You know, like, for me, you know, I've always heard like, oh, if something happens, find a support group. That we have all of these support groups for all different things. And we have things like even like AA and Narcotics Anonymous and Alcoholics Anonymous. It's just like when you are struggling with something, you find like-minded people that can give you an edge in healing, moving, trusting, rebuilding other relationships. So that's kind of the idea of the Chronic Illness Hotline is that it comes out of this like idea that a support group can help you feel less isolated, more connected. And Facebook is amazing. Like Nikita Williams and I connected in a group for chronically ill entrepreneurs. And that is kind of where part of the idea came from that like, wow, we need to recreate this for the masses. There's tons of support groups on Facebook and some of them are not as helpful. They turn into places where it's like this snowball of negativity. You need an outlet to be like, this sucks. This is terrible. This is awful. Like, that is the truth. It is. No one wants to be like, oh, my body's failing me.

This is great.

Like, it doesn't happen. But when other people chime in and are just like, yeah, this is the worst and the worst and the worst, it just triggers you. It takes you to a place of hopelessness. It's not as helpful. As when something like our group, people are there to say, yes, that's normal. I experienced that too, but this is how I get out of it. This is what I do. Here's some hope. Here's some positivity. It's always met with a positive spin. And that's kind of what the hotline does is that we want people to be able to speak to someone who has a chronic illness, All of our Compassion Counselor volunteers who take the texts from people that text in have a chronic illness, a chronic injury, or chronic pain in their life. So they understand not exactly what everyone is going through, but they understand the differences in your lifestyle. They understand the grief and the anger and the depression that comes along with the rest of your life because you're dealing with this. You get to a point— it takes a long time for most people— where you feel like you're, I've accepted this, I've got this. I know I've got my toolbox full of things that I do to care for myself when I start to pity this experience and feel like it's really unfair. But they still cycle back. You never stay in acceptance. And I think that that is one of the worst parts, is that you're like, yay, great day. And then tomorrow could be Totally different. And things like COVID, they break— like, I think that put everybody back in a tailspin of like, oh, and then just the ableism on social media and on the news and just like, oh, people who are sick, they don't deserve to live.

Who cares?

Like, that was like painful to hear.

Yeah, it was such like a nonchalant— like, I was talking to my husband about that. I'm like, when this first came out, it was just so like, if you're older and if you have preconditions, oh well, like it felt so like I don't even know what the word is, but it felt like, oh, well, thanks for that. We can just die and y'all are all good. OK. And it still feels like that in a lot of different ways, especially for people that have a chronic illness and specifically are younger. I feel like we are seeing more of that kind of non-compassionate attitude about, OK, well, if you have that, well, I mean, almost like we wanted this for our lives. So because now there's COVID, we deserve to get it and die. It felt like that in a lot of ways. The news doesn't help and all those different kind of things. Those things kind of bring up all those like really negative feelings about things that you're probably already thinking about yourself if you have the chronic illness. So it doesn't help the situation at all.

No. And it was, I mean, it is kind of one of those things where, you know, like if you don't have it, you don't understand the weight of your words.

Yeah.

Like it's inconvenient for you to wear a mask. Like you literally just have to put cloth over your mouth and you could save my life, but it's not worth it. Like, oh, wait till you get a chronic illness and all the changes and the things that you have to do. So that was tough. And that is actually like— so the Chronic Illness Hotline, my background, I have a master's of public health and I experienced 8 years of being misdiagnosed and mistreated, mis— like medicated, wrongly medicated. And that caused a whole lot more damage. It left me in a place where, like, I didn't really have anywhere to turn because they didn't have answers. And doctors were not very kind. They just said, "Oh, you're having anxiety. You can't handle your life. You don't, you know, it's you, it's you, it's you." And it turned out that they were causing me to have respiratory failure, heart attacks, and like brushing me off like, "Oh, it's all your fault." And it wasn't. It was all their fault. So like in those moments, like I could have texted someone and I thought about texting the crisis hotline. And I know that they would have taken my call, my texts, and they would have done their best. But they're active crisis and suicide prevention. And that is— we're kind of the opposite, which is like, you know, we don't want to die. We have this impending doom. And so—

oh, wow. I never thought about it like that. You're so right. Yeah.

And they do an amazing job for that population, people that are suicidal, people who have suicidal ideation, or even are just in that point where it's questionable whether they want to live, their methods work to keep as many people safe as they can. But when you're not that target population and you're trying to get help, what their, you know, prescription for surviving is, it doesn't mesh. And it leaves us in a place where it's like, it didn't help. And then I'm even more distrustful of another system. So I wanted to— it was like last early fall that the idea kind of popped up and it popped up because they launched a new trans line for people who are trans. There's already a veterans hotline. There's quite— there's a few suicide hotlines. There's mental health hotlines. There's LGBT hotlines. The Trevor Project is also LGBT. And when the hot— the trans hotline popped up, there was an announcement on social media. And I, of course, read the comments and some of them were awful.. And some of them were like, I don't understand why this is needed. And there was an explanation from someone being like, you have no idea what it's like to be isolated and to have this life-changing experience and not be able to talk to someone who is also going through it. And I was like, I have had this life-changing experience of getting sick and I don't have like a person to talk to that is trained in being able to not judge me and the proper language that comes, you know, conversational English is much different than like a professional English. And I was just like, man, I've Googled it before. Like, is there a hotline for us? And there's not. And I was just like, I want to try to do that. And so I started researching and, you know, like I said, my background in public health and like there's research, there's models, there's stuff that's in the Journal of medicine that says like, this is why support groups work and this is how hotlines work. And this is why, you know, people have studied all of the different hotlines, but none of them fit exactly what we needed. And so I was like going deeper, trying to find books. And there's really not like, you know, I wish there was this book that was like, if you read this book, it's going to help you deal with everything, but doesn't exist. And so then we got to early January and I was like, okay, you know, like I feel kind of solid on how we do this. I got some training in kind of taking crisis calls and, you know, crisis counseling certifications. And I was like, all right, the next step is to learn all of the laws and things you need to do to start a business because nonprofit is not a business model. It's just a tax ID that allows you to be able to have your donors write it off on their taxes. The business model is just like anything you want to start. And even though a lot of misconception is, oh, nonprofits don't profit, we do profit. We want to profit. We just have to put the profit back into the community we told the government we were helping. So I was all aligned, you know, doing what you're supposed to do and how you do it. And then COVID hit and I sniffed it out in like early January. I was like, this is something, this could come.

Yeah.

And then by the end of February, I was like, "Oh, it's all good. It's coming.

It's coming.

It's in Washington, so on the West Coast." I was like, you know, we can do this. We can, in America, we have the most warning from the entire world. Like, we've watched Italy shut down. We've watched all this happen. By the end of March, we can totally have like scapegoated this. We listen to what the world's doing. We can do this. I was so positive. And then April got here.

Yeah.

And I was like, oh, this is going to be terrible for a few years, maybe, you know? And I was like, set my business plan. I was getting mentoring. I was learning. And I was like, oh, we should be ready to launch in the fall. And I was like, I can't not be there for the chronic illness community. We're terrified. We're even now, we're even, everyone's isolated because we're all inside. We are hearing these horrible things about how, like, well, you guys, you don't matter. Like, you can just, you know, it would be so much better if we just got rid of all these people that live off the government on disability. Like, that's just this overwhelming message. So I just launched. I was like, we'll just put this number out on social media. And I think that this is so many business owners can relate, which is like, you can learn for the rest of your life. And then when you do it, everything you learn never lines up with what happens in your business. Yeah, forever. And every time you think you're like, yes, I got this. Yeah, spin, spin, spin, everything changes. Yeah, so that's kind of where we are in a totally like backwards way of going about it. And I think it helps, you know, like this isn't something that I'm like, here's a step-by-step and it's going to do exactly right. Like now it's like we're all doing this together. Anyone listening, if you have a suggestion, just email me.

Taking it.

Anyone. Where we are 6 months from now will be so much different than where we are a year from now. And in 5 years, we're gonna be so amazing. It's not gonna look like anything we thought. And that's just business.

Yeah.

You know, you brought up some really good points, and I guess business owners don't think about nonprofits as being a business. They think about it as being a nonprofit, like It's a business, but it's not a business, but no, no, it's a business.

It's a business.

And it just is different in taxes. Cause I remember when you were like, yeah, you were talking about like, I'm doing all this research on the nonprofit, da da da da. And then all of this was like in the background, COVID. And you're like, I just feel like I need to just start. And I think as that, just that whole thing, like, you know how Nike says, just do it. It's like the same thing. It's like, yeah. Start and then you learn so much. I totally agree with you. We like to try to make things perfect, but messy is sometimes better than anything because you can at least know what the mess is and then—

Yeah. Well, and like you don't know what you don't know until you figure it out. And like, that's exactly like, you can't predict what will happen with your business or what will happen in like social media is its own beast and they change it on purpose because then I learned how to do it and they change it and you know, advertising and just like, what are your customers? Like the best businesses have to kind of shift and adapt to their customers. It's the same thing. Like you and every single business owner is like, no, not yet. I'll just wait. I'll just learn a little more. Like, no, just jump in. Just start it because you're going to change it anyway. Who cares if your website is free and it just is basic? You'll add to it as you go. You'll have customers ask questions. You'll be like, I'm tired of answering the same question. Let me put it on my website. Like, I never thought I would be an entrepreneur. Like, I love entrepreneurs. Like, they're amazing people, but that wasn't— I'm like, it's not me. I want to work in a school system. I want to, you know, like, I was a teacher. I wanted to be a principal. I wanted to, like, never— and, like, for my whole life, like, I was playing with stuffed animals at school as a kid.

So, like, oh my gosh, I did not know that.

Yeah. And my father was a professor. So my biological father is a professor. So that kind of, like, It just was like part of the culture of the houses and him grading papers on the weekends when I will be over there. And it was just like, yeah, sign me up. And then life happens and I got sick and there's no way that I would be able to do that full-time and part-time in teaching life doesn't exist. And so it's like, wow, I am limited. I have to be able to control my hours, control when I work, control everything. And the only solution really is being an entrepreneur.

Yeah, but I think what's really cool about that is that you're able to take that passion of being able to teach people into this particular area of life. I mean, I just remember when I first got diagnosed with endometriosis and fibro. First of all, half the people around me didn't know what those two things were. I mean, this was a long time ago. So it feels weird because now as people look this stuff up now, they're like, oh, there's so many things.

I'm like, yeah. Right. That's not when I started. Exactly.

That's because— No, there's a whole— the world has been woke to this, but they weren't woke like 10 years ago, OK? They did not know about this stuff 10 years ago, and they still are confused.

And endometriosis, if you Google it and you read about it, it's like, oh, that's not that bad. No, it's life-changing, and the internet does not have it down pat yet. It is not what we think it is. And so many women for decades downplayed it themselves because they felt this pressure that like, oh, it really shouldn't be that bad. And now we have a lot of grandmothers and mothers of adult children who have it now that are like, well, actually it was horrible and I just didn't say anything. And so—

Well, it's interesting you say that because when I first got diagnosed with endo, all my family was like, we don't know. I was like, does anybody in my family have it? I was asking my dad and my mom and their sister. He's the only guy and he's got 5 half sisters. And he's like, yeah, nobody has it. And then 4 years later, he's like, I mentioned that to my sisters and they all have it. I was like, how do you not? He's like, I didn't know. And they didn't really talk about it. I didn't ask them specifically. And I was like, that tells you that that's where— that's just one thing. Endometriosis is just one thing. Fibromyalgia is a whole nother thing. MS, sickle cell, like all the different things that all of us deal with, like that are chronic, is there's so many different variations of it that, you know, and it's not the same for every person. It's so different and it looks different for other people. And I feel like I, I had a podcast episode where I was like, yeah, the things chronic illness has taught me about like running a business is like money in the bank. Like, I'm like, it's not that I want to have this chronic illness, but it has taught me a lot of things about about being flexible and being able to pivot and being able to like, one, serve a need that is there right now. And I think that's what you did really well with like just jumping into this so like wholeheartedly before you were like, not ready, but the time everybody needs it right now, you know? So I think as a business owner, like if you're starting a business or you're trying to start something, if your audience is needing it, you can work it out. Like you can work the tweaks out as you go and then you can have another reiteration of it that's like better and just start it. Just try it.

So I did that. I launched, I was like, we need this. Like I would feel terrible if I just was like, ah, yeah, I knew we were having a pandemic, but I wanted to wait. And the response was not what I expected. I expected people to like, need this hotline. And so far, it's not necessarily COVID-related. COVID kind of like, while we're not protected physically, emotionally, we're like, man, guess who's been locked in their house and missed social events for years?

Us! We're pros!

Like, it was just one of those things where, you know, like, as a, you know, starting this, I was like, oh, it's gonna be— I'm gonna be overwhelmed. I'm not— you know, there's gonna be so many texts, I'm gonna have to train people on the fly, it's gonna be a disaster. And it's not. The people that are texting are texting for lifestyle reasons and other reasons. And, you know, every once in a while they're like, you know, COVID has messed up my doctor's appointments I had planned. But like, that's not what I'm crushed over. Or like, oh, I'm so— you know, all of my family's home, you know, brothers and people have come home from college that aren't normally here.

Yeah.

But like, that's not what's crushing them.

It's just a piece of it.

You know why? I know it was the right thing now. And it was kind of like like a push that I needed. I learned that I was like, you know, that it— we're resilient because we've already been put through the wringer. And I think a lot of people feel better that it is there if they need it. But like, I totally could, you know, can stop dropping the COVID part of like our marketing because like it's not even major. Like there's— I think there's more outlets online I think that, you know, we see half of, you know, friends that aren't supportive, but then there's friends that are like, wow, I'm not even sick. And it's been a month that I've been home and I miss brunch and I can't imagine how horrible your life has been. So it has added compassion to those who are able to be compassionate, you know, like we're kind of the A+ superstars of dealing with this.

I feel like the community of people who live with a chronic illness. It's like I have another friend. She's in here, Janina. You know her. She's in—

Oh yeah, she came to my chat.

Yeah.

Yeah.

She— like when we were really good friends. So when this first started, it's so funny because my husband is not a chronic illness guy. First of all, he's like steel guy. Like he doesn't really get sick ever. So anytime I'm trying to talk— and that's a blessing. Like straight up, if we were both sick, that would be really difficult. But when this first happened, it was like I was looking at him like, why are you straight tripping right now? Right now. What is wrong with you? I'm like, we've been through this in our own lives with me. So I don't understand why you're having a freak out.

No, now it's him.

Personal.

Right.

And so I called my girl Janie and I was like, so is it me or is it— I had to have this conversation with her because her husband also deals with chronic stuff.

Yeah.

They were like both fine.

Yeah.

And so I was fine and I was like, is it me? I'm talking to Maurice, my husband, and he's kind of having real moments of freak out mode. And I'm completely calm, like completely calm. She's like, it's because we live like this all the time. Yeah. There's a reason why we didn't have to run out and get hand sanitizer. And, and yeah, because we already had it. I'm like, you're so— yeah, yeah. And I had to like be reminded that that's, you know, when you live with something like this is just what you do. And you're totally right. I could totally see like people are like with it are more or less like, yeah, this is what it is.

I think that some of us— not enjoyment might not be the right word, but that there was some, you know, like it was gratifying moments when people actually had some meltdowns because it really taught them that, like, oh, you know, they began to have a taste of what it's like to have this alternative lifestyle. And I had a lot of people support the hotline. And I think that if we hadn't had this pandemic and I just would have lost a lot of my non-disabled friends would have been like, "Oh, Cindy's just up to something. Yay, Cindy!" But not have really thought about it. And now they're like, "Oh, I get why I didn't understand." Yeah.

It makes them more intentionally thoughtful about the situation. Take it less for granted, I think.

Yeah, I think it definitely made people think that like, oh, I'm, you know, I'm not as invincible as I thought I was, and neither are my parents, and neither are my siblings. And I have been screaming from the rooftop that like, okay, y'all think that like, okay, Cindy's high risk because she has these health issues and this COVID could kill her. Some of y'all are high risk and you haven't been diagnosed yet. Some of y'all are high risk because you don't know about what's happening in your body. We don't have a doctor that goes up and down and checks everything off. And so many things are asymptomatic or so many things you're brushing off because you're doing so much and you have, you know, you're, you're just overextended and you're like, oh, it's just stress. And it's not. And even if you're perfectly healthy, this virus is a monster. Like it is not a joke.

It's creating chronic illnesses too. I mean, there's a lot of people dealing with the side effects of this that are now more chronic. It's important, like, just in general to realize that we tend to run our businesses and our lives like we have tomorrow that's guaranteed, and it's not. And so not that you need to add the stress of like, oh, I have to hurry up and get my life. But I do think you need to be more intentful. Like you need to be more intentional and purposeful with whatever it is that you are going to do and not try to wait for something to happen or to be perfect for something to happen. Because even like in the perfect scenario in your head, it becomes that scenario, something can happen that throws a wrench into your plans. And it's just like being able to be flexible and malleable with your business allows you to have less stress and overwhelm in it, just in general. Like, so, you know, if you're starting up, if you're just, you're maybe you're trying to decide if you're going to switch something up, it makes a lot of sense to kind of sit with what you want to do and try to figure out how to make it happen. Even messy, like even if it's not great, because I mean, life is kind of messy. So yeah, you just have to accept that it's not going to be beautiful all the time, you know?

And it's beautiful in the mess. Like we are— look, okay, I am a trash reality TV addict. I admit it. It is not a flaw anymore.

It is like, I don't know what it is.

I don't know what it is. I can't take my eyes away.

And that's a train wreck waiting to happen. I gotta watch it. I gotta watch it. I gotta watch it.

And like, but that's part of it. Like, I am an intelligent woman. I, you know, try to do my best and be the kindest. This little like dirty entity of my life where I'm like, ooh, drama, you know, like we want to be there. If someone launches this business and it's completely perfect and everything is always perfect, we don't relate to it as much as when it's like, oh, you know, I'm watching this person take Oh wow, that's working for them. Or, ooh, that didn't work. And I watched them redo everything and now they're on fire. Like they, we love to see progression. We love to see the cha-cha, the two steps forward, one step back that everyone does. And that's what's inspiring. Some of my most inspiring friends are like someone that just never gave up on their dream. They want to be a rapper. And now it's like, yo, we are getting close to 40 and like you are doing it and like I can do whatever I want to. Or you're, you know, in some part of like some business that I would never go into. And I'm like, I'm like, oh, tell me more about that. I didn't know about the behind the scenes. And so like just following your gut and like taking that risk. Like everyone else is doing reels on Instagram and you're like, well, I'm gonna do this other weird thing where I start just posting blank things. I don't know, something completely different. Yeah, like do it. It's gonna work for you. It's gonna draw attention. It's going to be like your own magic, and that's what we like. We like to see like your personality brought to life in this kind of like character that's professional and, you know, just does what lights them on fire. Yeah.

You know, you're so funny. It's so right. Like the whole thing about the reels. I've had so many people reach out to me like, hey, Nikita, how are you doing reels? And I'm like cracking up because I'm like, I'm just having fun. Like, I'm like, I mean, I can show you how to technically do it, like how to go into Instagram and pull it up.

But I'm like, I'm going to need that.

Like, I'm like, but if you mean like, how do I come up with— I literally come up with this stuff at the flying seat of my pants. And people love it. Like, when I'm doing— like, I just did one today and I was like cracking myself up and my husband's like, what are you laughing at? I'm like, myself.

But that's what we love.

We love—

that's when the spark comes out and we see this and we relate to it and we love to see when other people are like exuding joy.. And so like, it's— if you're making jewelry and that makes you happy, show it. If you want to write poetry, if you want to— you know, I— all my examples are always creative entrepreneurs, but like, there's so many other things. Like, you want to open your own— my, my partner, he builds computers, and like, that's his thing, and it's not my thing. Like, I can turn on a computer, yay! But I tell him all the time, I'm like, you like like know all this stuff and so many people don't and like just try to build them and, you know, and I'm like, you spend a lot of time just looking on eBay at parts. Like if that makes you happy, do it. Like I wouldn't, that's not like, I don't care that the CPU is cheaper in September than it is in October. Order them. I don't care. But it's his thing. And there's been so many times where friends will like send me a video He doesn't— okay, so he loves computers, but he doesn't social media. It's like, my husband is the same way. Okay. There are just— those people are out there. They tend to be men, and it's just not his thing. But people with coworkers will be like, just put their cell phone up and just— he's like babbling on about like this computer and how to do this and that. And then they're like, we don't understand what he's saying, but just look at him. Just look at this.

Yeah, exactly. You know, you just said it perfectly. I think that's what people want. Like, and I feel like people feel like there's like hard, fast rule on how to grow something or how to do something. And there really isn't. I mean, it's not, there's no one size fits all build a business plan. Like it just isn't. Nope. Because there's no one size fits all person. Like it's just not a, like we don't all just exactly work or think the same way. We have similar experiences. We're more similar than we are. Are not, but those experiences that are not the same are the things that make us completely different. Our values and our mission are all those things are so different. And that's what makes it so much more fun and interesting because, you know, that's how it is. And it's like, I love how you said when you first started it thinking, oh, I'm about to serve this audience of people who are going to need this during COVID-19. And they're like, girl, we don't need it, but we need it for that.

Right. Yeah. I was like, cool, I'm wrong. And that was the best lesson because it was another step to be like, even though I am part of this community and I need this, it's not the same. And the masses are what I need to listen to. Yeah. And it's just like, you know, you're always learning. And I think so what you just said is that there's no one-size-fits-all business plan or business this. And like, if there was, then everyone can do it. And that's why there isn't, that it's going to be hard. And if it was super easy and it just like rolled in and nothing really needed to be changed, it would be boring. Like, part of it is this roller coaster ride. And I think that that's part of like the personality of the entrepreneur. Like, if you have to kind of be like I like crisis management and I like success and, you know, I am a money chaser. Like, there's people that like, that's not— there's not a lot, but like, you know, that like money isn't necessarily part of their drive. But like those three things make it worth it. Like the successes are so much better because you've dug yourself out of this hole. And we need each other. Like, you need to see what other people— I didn't know that Reels was a thing until Natalie posted on The Rising Tide about like, how do you all feel about Reels? And I was like, well, I have to learn what it is because you just told me. And I'm not a video person, even like, you know, I was a middle school teacher and my kids would be like, come on, the morning announcements. And I'm like, the light would turn on and I would just be like Dear headlight. Yeah, like it just— I'm not— and I can speak in front of like 5,000 people. I can emcee an event like it's nobody's business. I can teach a lecture hall, but that camera and I'm just like, what happened? What happened to me? Why am I doing that? And I've gotten better.

I've practiced. Yay.

But like, oh man, it's just not my thing. So people are like, oh, show the behind the scenes of your business on a video. And I'm like, nah.

She's like, nah, I'm good. And here's the thing, here's the thing. I think what happens too, to think about, I saw something today that was like, some people are having issues with Reels where, or Instagram in general, or just social media where their algorithm and the numbers or statistical blah, blah, blah, blah, blah, blah, blah. Here's my thing with that. I always tell my clients, I'm like, look, all that stuff is going to be broken, fixed again, broken, fixed again.

Changes. Yep.

Exactly. And I'm like, so if you continue to run your business based on what they do, you will never get to where you want to go. That's why you have to have more eggs in one bucket in the sense of growing your business beyond those platforms and like really working on collaborating and connecting with people. And I would imagine like with the nonprofit aspect of, of that business, like for Chronic Hotline, that's a huge piece of it, like connecting and networking with people.

Yeah, it's kind of a few different sides. Like, we have to get the word out about the hotline and spread it, and social media is the perfect way to do that. We have like no followers because I am not a social media person, but part of that has been to kind of balance this— what we can take on right now and then where we can go. So we have our first class of compassion counselors as a group graduating at the beginning of October.

Hopefully.

Awesome! And so then we'll be able to do a big push and then we'll have our beta training in October. And by the end of the year, it's definitely going to be like, you know, PR, which is all networking. Then we need to get more volunteers, which is all networking. We need to grow into donors. Nonprofits aren't funded by taxes. Some people think that like, oh, they get money from taxes or they get these grants, whatever that means. Like, no. And then when we— if we do get a grant, we've applied for it, and then there's stipulations behind it, and so many of them come with like what that organization that's giving you the money wants you to do. So the best way that nonprofits grow is through donations from smaller donors and through fundraising activities, and that is nothing but networking and teams of networking and just, you know, being able to kind of the bigger you grow, the more legitimate you are, the more funding you have, the more opportunities that open up, and it's a slow growth into what you truly need. And the first few years are hard for every business owner, but like especially nonprofits. They are not supposed to run for free. So many of them do. So many people are like, oh, but you know, your payoff is that you're helping people. It's like, that doesn't pay bills. Like, I am a professional. Like, I could be doing so many things with my education and background. And because I'm doing this, like, I deserve to be paid a wage that's fair and on par with all of my, you know, equals out in the for-profit world. Or then, you know, a lot of people work in government, in healthcare. If I could get paid as if I worked for Big Pharma, right? Fantastic. But, um, Like, it's so multifaceted with networking and just keeping those relationships going and explaining growth and explaining why things are changing. People don't like that when they're like, but I paid for this and that's why I give you money every month. And it's like, but that's not what we need. Things are going to change.

Wow.

Yeah, that's a really good point. I think from a business, like for-profit place. Like, I'm thinking, like, in my head, I'm like, man, maybe I should have gotten into nonprofits in the sense of— because I enjoy not, like, not to, not to do the business, but I really enjoy, like, the networking aspect of things. Like, so, like, a long time ago, I used to get, like, hired to go and do networking and bring awareness for small businesses and stuff like that. And so, I mean, and that's probably why I'd be big portion of when I work with my clients. I'm like, you need to collaborate, you need to go connect with people because you are basically trying to grow your influence and your authority within circles that are already existing instead of trying to create your own. And in a nonprofit, that's literally what you're trying to do. It's just trying to grow that way. And so if you're building a for-profit business, why would you try to reinvent the wheel when there's someone else already doing it? But serving an audience that maybe not be exactly what they're looking for, but they are looking for you. And so if you create that bridge, you know, it might take a little bit longer. So one of those things that I tell people, I'm like, yeah, my business is probably more like a slow burn, like growing slow burn, but I can, I literally have seen the growth continuously. And for me, that's great because I have chronic illness and I don't have to be on fire 24/7.

That's us here. I was like, you know, I feel like this just like takes off, like we're not going to make it. It's going to burn out all of our volunteers. Like it definitely, the slow burn helps. And I, you know, like that chase for perfectionism, totally. I, you know, it's gone. It's not available anymore. It is out of stock in my store because my chronic illness is just like, haha, never again. And I loved being a type A person, but like, no, Nope, can't do it. And it helps create like the right fit and the right people. And of course there's always things that change and fall out and like, but like it's not this like huge jump. It's like tiny little baby steps that is like so hard to do for so many people, but it's like, that's my only choice.

Cool. Well, how can everybody support, like, what's some cool things coming up for Chronic Illness Hotline that people can like, you know, go to the mat for you or to donate or to connect with, all that kind of stuff. Tell us how we can do that.

So one of the best things that you can do is like our social media accounts. We're on Facebook, Chronic Illness Hotline. We're on Instagram, Chronic Illness Hotline. And we are on Twitter, barely, @theillnesshotline. And just being able to interact interact with the pages as if everyone out there— we're trying to beat the algorithm. But the more that you do that, the more that people will see, share. We all know or love someone that has a chronic illness. It touches so many people, whether they're open about it or not. And giving them access to seeing this as we grow is like— you will be our hero right now. And it's something that's so small. But then from there, we, like I said, so we'll be graduating our first class. So come October, there'll definitely be a bigger push. There'll be more articles about us, more things happening that can really help by being shared. And we'll be having posts about getting volunteers. And so there's several ways people can volunteer. If you'd like to volunteer, anyone out there, we have all of our compassion counselors. They volunteer between 2 and 4 hours a week to cover the lines. You have to have a chronic illness, chronic injury, or chronic pain.. But if you don't and you want to support our hotline, we are looking for social media ambassadors. They get their own images and things to post and talk about. They're on watch just while they're on social media. If they see someone that's like, "Oh, I'm struggling," or, "I've, you know, I'm talking openly about my illness," that they can say, "Hey, I just wanted to let you know that there's a hotline available now." And then we will be growing into having like fundraiser partners, people that are like, "Oh, I want to donate." donate a portion of this product from my store, or I would like to do my own fundraiser where I ask my friends and family. Like Facebook has the— your birthday, you can pick a charity and we will hopefully be there soon. And those make huge differences. Every little bit helps us be able to take on the next step. Technology is expensive. It adds up. Running a business is expensive, especially in the startup, and it adds Every little thing adds up. As I said earlier, like, the more funding we have, the more it opens the doors. Like, a lot of grants aren't even available to us until you're in your second to fifth year, because they want to see you have traction. They don't want to give money to a nonprofit that's about to tank.

Yeah.

And so it's this beginning time that makes a huge difference in being able to grow into something that's needed. Like, this is something that, like, so I, you know, I had this idea and I started sharing on social media, and I expected there to be a little bit of backlash. Like, we don't need that, why would we need that, people aren't gonna use that. And I didn't hear once. Everyone was like, this is amazing, I can't believe this doesn't exist, or I've Googled for this before. And, you know, like, I'm jealous that some, some of the larger associations like Juvenile Diabetes and Cancer, they have hotlines of available that are a lot of— they're educational. They will listen and allow you to vent and work through things. But this is something that's kind of like different. It's there to take and give you compassion. It's there to help you identify the positive things that you're overlooking. And so it's a unique idea that's going to look so much different than a lot of the other hotlines that like just having both those in the chronic illness community and those that aren't is what is going to make us.

Yeah, I feel like this hotline is going to be like when Uber came out and we're like, oh snap, why didn't we think of that? Yeah. And it's gonna be like, oh snap, the Chronic Illness Hotline, like how they're doing that. It's gonna like, I feel like, because I just feel like there is, there's a need for it in the sense of just from, I mean, because there's a mental illness hotline, I think, where they like help you with dealing with stuff like that. And I feel like, you know, even if, like, even from like a spiritual place in my head, like a spiritual place, you know, you can, those things are helpful. But sometimes you also need someone who's like, what you're feeling is okay, because the people around you don't to understand that those things are happening. I wish I had thought about doing something like this when I first got diagnosed. I think this is a huge thing for people when they first get diagnosed because they don't even know what to do with what they've just been told. It's a little bit different. And I never, never want to knock anybody about cancer because I have family who's had cancer. I've had family who died because of cancer. Trust me, I'm not saying anything. I'm not saying that about people who have cancer. What I am saying about cancer is that when you have cancer, usually there is a treatment plan. There's a diagnosis of like, there's a whole thing. Like they've got researchers and all the research. But when you get diagnosed with a chronic illness that one is rare, two, they're still trying to figure out how you even get it. Three, like they just don't know. Then it becomes like one of those things where you're like, oh, so you have this thing. We don't know anything about it. Here's your life.

Yeah, a lot of doctors are just like, oh, you know, like, we don't know what to expect. And neither were you. And it's going to be different. You tell us. They're like, they're like waiting to hear from their next appointment. So what's going on?

Wow, that's crazy.

That is the hardest part. And cancer has done a really good PR. They have multi-million dollar nonprofits, research societies, and programs that have allowed the public to really understand how awful it is. And so like, if someone's diagnosed with cancer, all of their friends and family are like, "Ooh, we know this is bad. We know this is awful. We are gonna drop off meals. We're gonna make sure we send little gifts. We're gonna brighten your mood." And then when it doesn't fit into the cancer box, it's like, people are like, well, we don't know what to do. It's like, well, you could try to emulate the support that you do for some chronic illnesses to everyone. But there just isn't, you know, this like mass education. And I hope that the hotline, like, once we really get our bearings down on our first purpose of taking texts, the next thing we want to do is educate the non-ill people. To know that like, okay, I can go to their website and there's a list of ways that I can support my friends. There's education on why saying it'll get better is probably one of the worst things that I can say because it literally is going to get worse.

Well, thank you so much for being on. I really appreciate it. I hope the ladies get a chance to, you know, really get to check you out and support you guys. You know, I'm going to be a support.

So We're going to get you to be a volunteer. That's what I heard today. You were like, oh, I wish I'd have thought of this.

Oh, I could put you to work. Yeah, yeah. You know, you know, we'll talk about it. We'll talk about it. We'll see what happens. We'll see what happens. But yeah, I'm super excited for you and for this whole mission and everything. And I think this was a great conversation, like whether you're thinking about starting a startup or you're in the middle of startup or you're thinking about a nonprofit, just know it's a lot harder than a for-profit. Just kind of keep that in mind.

One more thing before we go, which is like, so it's great for you to support the Chronic Illness Hotline, but you can support any nonprofit. Every single nonprofit out there needs you. If you're into the dog rescues, if you're into homelessness, if you're into whatever it is that gives you a little bit of like, I'm helping the world, help them. Share their social media, comment on stuff, like do what you know you want to do because like that's the only way that they're gonna make it. And the more that you do that, your friends see it and then they're like, "Oh, well, I want to do that for this nonprofit." Like we are drowning in everyone, you know, like every business is competing, but like we totally, the nonprofit community needs extra help.

Yeah, yeah, totally. All right, so I'll see you guys later.

Okay, ladies, that's a wrap. I hope you really enjoyed this conversation, and I hope now you will go out and share more about Chronic Illness Hotline with your friends, family, and other communities that might be looking for this type of resource for helping them cope better with living with chronic illness. Know that they're not alone, know that you're not alone, phone, reach out, send a text message to the number 202-596-6520 and text the word CARE, C-A-R-E. And this is a beautiful hotline where you can get some support for those who are living with chronic illness. And I want to say thank you so much to Sydney for sharing her story and coming on and even just having this resource for us and building this despite her own health challenges and life hurdles. So thank you so very much. If you want to learn more about her and the foundation and how to get in contact with them, please go to the show notes on my website at sheescrafted.com. And in the meantime, remember that yes, yes, yes, you are crafted to thrive.