Finding Chronic Pain Syndrome Support Groups

Today we are talking about Finding Chronic Pain Syndrome Support Groups, and this is talking about specifically if you are struggling with any kind of medical condition, anything chronic. It can feel so isolating and lonely.

Welcome to Wellness in Every Season. We talk all things wellness to help you align yourself, align with your goals, find balance in your life, and just recalibrate yourself. If you are listening for the first time, welcome, welcome. I'm so glad you're here, and let's get started in the rest of the podcast.

And before hitting record, we were starting to connect, and I had to say stop because there's so much good information they were starting to give me.

And I want to start out by saying, what Kevin was saying, that this is a free platform, which is huge because, medical care is so expensive, and it can be isolating because it takes a lot of time, it takes a lot of money, mental energy, so let me explain a little bit about them, but there's so much passion here that I'm just gonna keep it really short and let them explain themselves.

So I have Kevin with me, and Henry, and they started this amazing community called Wefayo, and it's about connecting people facing medical conditions, health challenges, special needs, along friends, families, caregivers. There's community forums. There's a lot here. And what Kevin was telling me, which is really important, and especially in a world where I swear I am getting emails, I'm getting letters in the mail saying my information has been compromised, and Kevin, thank you for being on, first of all.

But let's start here for people who, in the world of AI and where our stuff gets stolen all over the place, give people this peace of mind to begin with.

I wanna thank Autumn for having us on the show, and I'd like to say hi to everybody who's listening. Thank you for joining today.

So Wefayo was a platform which is free, and we constructed it to help people, and it was created based on our personal experiences. But to build upon what Autumn was saying, the platform is free. We also don't collect personal information. We don't sell any information. So for example, when you go to sign up, we don't ask you if you have any medical conditions.

We don't ask you your date of birth, your gender. We don't ask your street address, and you could join under an assumed name. None of that matters. What matters is that you're coming to a community where there are other people with perhaps the same condition as you, and we all wanna help each other. And of course, we also provide some other tools and resources, that people may be interested in.

Again, all free.

I think that's important because life is hard, and if we can find ways to make it easier and to find other people to connect with, it makes life so much easier. Enjoyable.

So you told me, but tell the listeners, why this company name? What does it mean to you guys?

Yeah. When Kevin and I met, we had different experiences. We had our own stories of meeting here and, he had an idea, and then I look at it and I'm like, "Oh, I have an experience as well, and I would love to help." We'll talk about in detail really what those stories are. WeFayo is a construction of, it means we care, but not in a sense that it's a construction of two words.

One is we, which is English, right? Then the other is fayo, which comes from the Luganda word okuafayo, which means to care, right? So we constructed those words. 'Cause I'm originally from Uganda, so I'm constructing those words, we care. So we, you know, we formulated the word WeFayo. It rhymes pretty good. I, I love it.

Kevin loved it, and, yeah, we went on with it.

So you hinted that you both have... You connected because of your medical past. Can you share a little bit of that story?

Yeah. So we didn't particularly connect because of our medical past. I met Kevin when I was doing my master's at Columbia.

He was, part of a mentorship program, and you pick a student to mentor. So, I was lucky enough that, one of the students he chose was me and, we, over time, as, he mentored me through my capstone project, we got to talk further and further.

And so, my particular story was a friend, when I was growing up in Uganda, who he had his legs both amputated, and he just could not walk. He had these hands, and I used to play soccer with him and, you know, we all obviously stood up, played soccer, but he played with his hands, right?

When you're young, you don't see much of it, 'cause, he's being able. He's playing with you. But as I grew up and started seeing how life isolated him from the rest of us, just from, school. He couldn't complete school because, he just wasn't able to get into some things

when time comes to get jobs, like he just couldn't get jobs. Like he could apply and get rejected. He ends up creating this small business just to sustain him. But seeing him grow, with me and getting that first-hand experience of seeing his life as a close friend, I always asked myself how I could help.

Didn't get many answers for that. But this idea coming, together with Kevin and talking through it, for me, it was just a chance of how, I felt I could help, anyone with special needs. This was dear to me and, ever since I committed and decided to work with Kevin on this, it's been one of the best decisions I've ever made

What's your story, Kevin?

Thank you, Henry. So two deeply personal experience is what led me to be involved and create, WeFio. First, I have a special needs son, and watching him work so hard for things that most people take for granted, like building genuine friendships, finding his place in the world, being part of a community and finding opportunities to just shine.

In addition to that, my wife has a chronic medical condition, and she was part of an online community many years ago, and she got a lot of support that way, met some folks, became lifelong friends, and then one day that platform just shut down. And so really being up 24 by 7, middle of the night, doing research, thinking, you know, "What's the best we can do for our son?

How do I help my wife on her journey?" It dawned on me, our story's not so unique. There are millions of people, millions of families in the same situation as us. And so I decided rather than just build something and help my family, that became my calling. Let me build something where I can help everybody and use that energy and those resources to build WeFio.

And, from there it, it's become quite large, but that was really the beginning of it and that was the inspiration behind it

 What kind of investment are we putting into this, not money-wise, but, time?

What does it look like for us if we're interested in joining?

I'm gonna cheat and look at the list- because it's gotten a little bit larger than my memory can remember all the details. At a high level, We-Fi is now 180 communities and forums.

It's friendships, dedicated support groups, essential information, inclusive programs, and I'm happy to give some examples. Job and volunteer opportunities, private conversations, social activities, therapeutic workshops, technology innovations, training events. We also have inspirational stories of people who have broken through the glass ceiling, people who have, physical or cognitive, challenges, and the things that they've done.

For example, we've got, a ballerina with no arms. I have a video of her. She's fabulous. She's wonderful. We've got, an autism car spotter who is now certified by Ferrari to take pictures of their vehicles. Tons of people with, such wonderful stories that the reason we added them is to inspire other folks.

As a perfect example, let's say somebody has a child who has Down syndrome, and that child wants to be a model. We have the story of Sofia Jirau, who is Victoria's Secret's first model with Down syndrome. You can read about her. You can follow her on Instagram. You can watch videos of her all through the platform, inspiring people to break that glass ceiling.

We also have about 60, 70 entrepreneurs who also have a variety of special needs and disabilities, and we promote them. And the idea is that a lot of times I'm asked questions, "My son has this, my daughter has that, what kind of future can they have?" And I talk about, come to the platform, see those inspiring people.

But for example, we've got Drew Davis, who has cerebral palsy, and he created an online hot sauce business. We have Matthew, who has Down syndrome, and he created a, a barbecue sauce business. Holly Bach and his mother, he's, has autism, and he's got an online cookie business. So want people to be aware of this, and having a special need doesn't stop you from fulfilling your dream.

And people can reach out and ask these folks to mentor them, and they can also go to their sites and buy directly from them.

We also provide around-the-clock support, We have created four AI assistants that were built for the special needs community. They're quite unique. One of them is called the Conversation Coach.

So if somebody wants to communicate with somebody else and it feels a little awkward or is non-verbal or difficulty communicating, they could come here. My son with special needs has used it to help him in his communications. We also have, another one that helps people offload what's on their mind or if something in particular is upsetting them and they need someone to talk to, but they need full privacy, they could come here and, fully private, they can talk about what's on their mind, unload maybe something that bothered them.

We also provide a career helper. So my son was lucky enough to have a job coach. Not everybody has it. I realized that shortcoming, and so we created one, and my son has used it too. An example, if somebody is working and they're having difficulty stacking containers or someone at work is teasing them, they could come here and share that and this will help them think about...

It won't give the answer, but it will help them think about different things to try. And there's another one that breaks down tasks, makes it easy. My son didn't know how to make a ham and cheese omelet and he wanted to, and the organizer helped break it down for him We also have, so we think of those as four innovations.

We have another four innovations, also quite unique, for people who have difficulty communicating. So for example, we have an assistive keyboard that, it's extremely unique. It has different configurations if somebody has autism, dyslexia, ADHD, a variety of cognitive conditions. The keyboard reconfigures itself and changes colors and sizes, and it also has an assistive reading pane based on our own algorithms through a lot of research that has different ways to help people lock on to the letters, and it helps them read.

And it also has many options, and it can also speak to you. That tool can be used anywhere because you can copy and paste. So it's really helping people communicate in ways they haven't been able to. We also have a communication board, AAC communication board. Over 1,000 pictures, images, and it speaks to you.

So for example, if someone's non-verbal and they want eggs for breakfast, they click on food, I want for breakfast. They click on eggs. It reads it out. They're hearing the words. They're seeing the pictures, and it's got some other ways to help people learn vocabulary. And we also have some other tools.

I don't want to put everyone to sleep here, but we have other tools.

We also just rolled out the first national Blue Envelope program. So Blue Envelope is a program that a few states have adopted, and the idea is if somebody with autism is stopped by a policeman, and the person with autism is having difficulty communicating, there have been circumstances where tempers flare, and it becomes a very dangerous situation.

So in those states, you can go to the police department and get a form that you can give to a first responder, and it explains you have autism and teaches the first responder what to expect. We, made the first national version of this. It's not just for autism, but it's also for ADHD, PTSD, hearing, and cognitive differences, and we have all the various forms people can print.

You don't have to go anywhere. And we also have another version for people who don't drive. Couple of months ago, there was a shooting. Somebody with autism approached a policeman. It was a miscommunication. Person was shot. So even if people don't drive, we have tools for that. And as of today, we also added a child advocate.

So a lot of times people don't know how to navigate a school system so that their child can get the care that they need or the Medicaid system to get the support that they need. As of today, we've rolled out where you could come. We have a child advocacy community. You can ask questions, and we have somebody who, he himself has autism.

He's raised three kids that have autism, and he became an advocate 15, 20 years ago. Ask your questions. Get free information. So that's kind of the high level. There's a little more, but I don't wanna put everyone to sleep.

That is amazing, and actually, I was just thinking that this would be amazing to have in schools, so I'm glad that you mentioned that.

So how do you get funds for this? For anybody who's like, "This is amazing. I wanna donate or whatever," is there a way to do that?

Yeah, for now we have been, funding, this project ourselves, right? But we are working on different, funding options. So that's in the works and we will be putting out announcements, when we are ready for it.

Perfect.

Mm.

So it will be in the show description if it's available, so just check there for that answer.

So people can always go to WeFayo. I'll spell that W-E-F, as in foxtrot, A-Y-O.com. We're also just starting to, post on social media. We do have a Facebook page. We have a LinkedIn page. We're now adding, Instagram, TikTok, and YouTube Shorts.

Honestly, we spent a few years building it, and we've already got a nice, following. We really have not spent a lot of time getting the word out, which is one of the things we need to do. If I could also add, we have in the menu something called Activities, and if you click on it, it lists activities for people that have various disabilities, across a bunch of states.

I think there's about 30 or 35 activities. There's an online book club, a national for people, again, special needs. There's jewelry making. There's a camp. There's education. There's training. There's, making dog cookies at a bakery that's set up for this. Tons of things, and we wanna add so much more.

It sounds like you are both listening to the community and saying-

"This is what we want," and you're building from there.

Yes. Easiest thing is that when anyone is using WeFayo, we've got a menu item. Tell us your suggestions. Tell us what you're looking for. I mean, the best way to build something for everyone is to hear what's on their minds, so thank you for that.

I wanted to let you know that there are some amazing things happening behind the scenes here that I'm very excited about. The first one is I am opening my podcast up for sponsorships. So if you are an aligned brand with wellness, reach out to me. You can find me wellnessineveryseason.com/podcast/sponsor.

I also have something going on for you listeners. If you've been listening for a while, I interview people who are aligned with wellness, and they talk about the healing modalities and different modalities that they do, but it is in a very descriptive sense. I am making it so that you have the chance to experience it during a recorded episode, and other people get to experience it alongside you so that we can really see how it works.

Instead of just this zoomed-out experience, we get to really zoom in and experience it. So you can find out more about that at wellnessineveryseason.com/listenerwellnessguest.

What else do we need to know before we just start clicking away and checking it out for ourselves?

I would like to put it out there that we are welcoming, anyone, whether you have special needs or you're a parent of a child with special needs, you're a caregiver, just check out the platform. We also welcome feedback. We have a place where you can put your feedback and, we can consider it.

And I think we'll also leave our contacts behind, for anyone interested in... If you're passionate about this and you're interested in funding it, we'll be open, for those conversations as well. Even if right now it's been us, personally funding, the project.

So we also built this to handle any medical condition that there is. A lot of platforms are limited to this is Crohn's, this is this. We've got well over 150 medical conditions, and, we do have that suggestion box that Henry and I do read. If there's something that you're looking for, we can create a community around it.

If there's something you want, we can add it. If I could give an example, one of the folks I was talking to, they were thinking of maybe we should create a community for people with autism that love to cook, and other people around the country could ask them cooking or baking questions, and they could answer.

So if you've got a group of people or you're a part of a group and you want something, and you wanna be able to help others, we're happy to help set that up. It would take no time for us to set it up. So if you're seeking connection, looking for resources, building a community, or if you wanna give back, join.

Contact us. We're happy to work with you

Is this also a place that we could go if we find out, say, a coworker has this and we're trying to understand them better and figure out how to connect with them better? Is this also a place that we would look into that?

Oh, absolutely.

Perfect. I have several people I have had on my podcast that I will be connecting you to, because they are professionals with this certain kind of condition so I think that'll be so fun. And for all of you who are listening, everybody knows somebody who has a medical condition of some kind.

Please share this, because it can be so hard, especially if you're at the beginning of it and you don't know exactly what the medical condition is, and it takes a while to get through all of the red tape and the diagnosis, and this doesn't quite fit, and it can be painful and lonely when you don't have the diagnosis yet but you're suffering.

So this sounds like a great place to start, to have that sense of you're not alone, there's other people going through it. I know how hard that is. I've been through it myself. I've gone through several specialists to find out no, it's actually this. Felt like a waste of time and money and energy and everything else.

So I think the hardest thing in this life is when we feel like we don't have people who understand us. And we live in a world where we are so connected digitally, but we are so separate from others, and this feels like another way, and we're using digital of course, but to find that connection. Because we are such a global community.

We learned that with COVID, of how global we really are. So we can have people that are on the other side of the world, who we are connecting to, because they have a similar medical condition, they have a similar experience, where maybe we can't find that within our neighborhood.

So I love the idea of this. I love seeing how passionate you both are. I can tell that there is so much joy and excitement for this, and thank you for sharing that. That's amazing.

Thank you for having us, Autumn. It's been an absolute joy working on this. Working on something that I particularly think is impactful, to a lot of people. Kevin and I, like going through these groups of people, Facebook groups like, children and, you know, seeing, some of these issues that, people, even just people that, you know, take care of people with special needs go through.

It's been very, eye-opening, and humbling in a way, because, it kinda takes you out of the world of where you think, everyone is fine. Look, the world was designed for everyone, right? And, you get to learn that people have totally different experiences just, because of, who they are or these, special, conditions they do have.

For me personally, it's been such a humbling experience and, every single day that I work on this gives me much more and more passion towards it. I really wanna help much as I can Kevin and I share this and, as much as people can come to Ifeo, post their community, post about their experience, driving out there, go to Ifeo, pick up that blue envelope program, pick up that blue envelope so you don't get in trouble.

To me, that's totally fulfills and satisfies me

It makes me think about all the people who have been wrongly incarcerated or have been killed just because of a miscommunication, and how hard that is on the police officers. You never know what you're gonna get when you're rolling up to that window or when you're going to that door, what's going to be on the other side, and can you connect with them well enough to protect them, well enough to protect yourself?

Or going through the school system and not being able to figure out how to best communicate with the school system, "This is what my child needs," or even understanding what your child needs to then be able to communicate it to someone else. Or my thought when you were talking about the keyboard, how many people feel like they're not normal, using the air quotes.

Who really is normal? What is normal? But that's a side question. Of how hard life is when we feel like we have to conform. We have to conform to a keyboard that doesn't work for us, or this is how everyone else reads, but I can't read that way. I can't communicate that way. And how hard that is on self-esteem, and then it makes it hard to then want to go out into the world once you've been forced to, in the school system, you need to think this way and work this way because there's how many kids to a class.

And then you go out in the world and you don't know how to work with other people because of whatever diagnosis you have. So I love that you have come up with all these different ways to help people to succeed and to find their purpose, because I know so many people, it takes them years to- unlearn societal expectations to really become, "This is who I am."

And there's so many people who are Einsteins in this world, but they don't know how to work within the constraints of this is what society expects, and then be able to flourish. So I love that you're helping to find a way through that so that they can then own their own business if that's their calling.

Yeah. Because the world has so many needs in it, and if we're all trying to be, I keep using this through so many episodes, but it's my favorite. If we keep trying to be the exact same crayon color, then we're missing a lot. And-

Absolutely ...

some of our favorite things that we use all the time are designed by people who have Downs, who are autistic, who have ADHD, who have dyslexia, who have whatever, and they might not have flourished in school because of it, but they absolutely have met a huge need in the world.

And how big of a difference if they can have that help now, if they can have that community now instead of years from now, decades from now

I like to think of it as everybody has something special. There was a great quote from Albert Einstein, and I don't remember the quote, but the idea behind it is, everybody has something that they're great at, but if you judge a fish on its ability to climb a tree, it'll live its whole life thinking it's stupid, yes. It's understanding what people are good at. Just as an aside, we have a community called Workplace and Talent, and it includes some research from Harvard and some other places that identify based on certain conditions that people have where they excel a- above everyone else.

The research says that people with autism are typically the best data scientists because they can understand huge levels of detail, and they almost intuitively can feel and understand when something is wrong with data or details, and it's earth-shattering how many companies realize this and hire autistic data scientists.

And then it talks about people with other special needs that tend to have high levels of empathy, and they turn out to be the best customer service representatives. So it's definitely a must-read to call out for any company that wants to ever hire anyone. You'd be surprised at people with skills you wouldn't think of hiring for certain jobs, they're great at.

So definitely take a look at that.

It makes me think about if I- Yeah ... was trying to run a huge top-level company and I only hired people exactly like me. That would flop in an instant, right? Because, If I have a- all these clones of myself, there are huge gaps, and it needs to be, we need to think of it the same way.

And that- We need diverse thinking ... personality that's-

Right ...

that's with medical conditions, and the thing is even if it's somebody who doesn't have a neurodivergency of any sort, and it's somebody who has a physical disability. Those people can be some of the most compassionate, they can be the hardest working.

They... Yes, they will need help in different ways, mostly it's the help that they need, and using quotes again, air quotes, of back off and let them figure out what they need, and maybe do it for themselves. Maybe they need a different desk or a different keyboard. And knowing that it might be an investment for you at the beginning, they will more than excel if you give them the space and the time that they need to really ramp up in your business.

Great people worth hiring. I am so glad you said that.

Yeah.

I am so glad you said that because, I mentioned that people can find jobs, so we're preparing to launch a strategic outreach program to help companies recognize the benefits of hiring people with special needs. And as preparing for that, I did some research, and often people with special needs, even physical as you had mentioned, we spoke about the empathy before, they tend to work harder because they are so appreciative of having a job.

They tend to be more loyal, and they stay with a company longer, which lowers turnover costs and replacement costs. And we have this whole list of benefits that, again, a workforce with a blend of special needs people, have such a strong profound benefit on return on investment. So for any company that wants to hire, somebody with disability, special needs, medical conditions, or they wanna bring on a volunteer, you can post that opportunity for free here.

And if someone applies, it goes straight to your site or to you guys. We're not looking to be, interim, we're not looking to make money on posting or placing or sending resumes, but we also provide access to a workforce that you probably haven't tapped before that tends to be highly loyal

And it sounds like there's resources to understand them while you're doing that.

Yes.

Yeah. We have one requirement for companies, is special accommodations because, we recognize how absolutely brutal the job market is and the competition is, especially for people with special needs. We put that requirement as a commitment, that you have to know that you actually care and, you have special accommodations.

You mentioned, maybe it's ramps that you set up for, mobility help or, anything, and that's, like, the commitment of your care for people with special needs.

And honestly, if you're doing that for your employees, you're probably also more willing to have wellness things in general, and there is so much science behind this.

When you treat your employees well, they're more loyal. All of the things that you said, even if it's not somebody who has special needs. When you treat people well and you show that you care, you show that you're appreciative of their work, they will reinvest in your company.

Yeah, and I think of that as the difference between getting an employee's compliance to the job versus earning their personal commitment, where they will go way above and beyond, exactly as Autumn is saying.

Yeah.

Is there anything else before we close out so we can have people check you out faster?

Check us out and spread the word to everyone you know.

Thank you so much for listening, for sharing this episode, and Kevin and Henry for being on and for sharing with us and for creating this community.

There is such a huge need for it

Once again, thank you so much for having us. Much appreciated

Thank you so much for listening to this episode. I hope that you found the answers that you needed and you had some amazing aha moments. Please share this episode with others because it helps us align ourselves and then better align the world so that we can seek the healing that we really are looking for.

As part of the legal language, I am a certified life coach with a bachelor's in applied health. That is what I am leaning on for this. This is general advice, take it as such. See you in the next episode.