Ep: 013 - Stiff Person Syndrome Doesn’t Define Me - Tisha Foster
Tisha Foster - Bio
T
isha Foster AKA The Bullhorn in Stilettos is a mother, author, ex-model and avid speaker for people with Stiff Person Syndrome (SPS) and all invisible conditions. She hopes to inspire others through sharing her journey and creating more awareness around the rare syndrome which affects one in a million.
After being diagnosed with Stiff Person Syndrome, she truly believed life was over for her, but with God’s help, she continued to not only live but also enjoy her life despite being told she would be bed-bound for life.
Her book is a testimony to staying in the fight and never giving up!
Contact Links:
Resources:
Stiff Person Syndrome Defined:
Stiff Person Syndrome (SPS) is a rare neurological disorder characterized by fluctuating muscle rigidity and spasms, predominantly affecting the trunk and limbs. This condition is marked by heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can trigger muscle spasms. SPS is believed to be autoimmune in nature, involving an abnormal immune response that may target specific proteins in the brain and spinal cord. The syndrome often leads to significant impairment in movement and can be associated with debilitating pain and anxiety, profoundly impacting the quality of life. Diagnosis is complex, involving clinical evaluation, antibody testing, and response to treatment, as there is no definitive diagnostic test. Management of SPS typically includes a combination of medication, physical therapy, and stress-reduction techniques, tailored to the individual's symptoms and needs.
Summary:
Tisha Foster shares her journey with Stiff Person Syndrome and how she has overcome the challenges it presents. She discusses her determination to live life to the fullest and not let her condition define her. Tisha emphasizes the importance of vulnerability and sharing one's story to raise awareness and end the stigma surrounding invisible conditions. In this conversation, Tim Reitsma and Tisha discuss Tisha's experience with Stiff Person Syndrome and her journey with God. They emphasize the importance of understanding and accommodating individuals with chronic conditions, challenging the notion of what is considered 'normal.' They also highlight the need for education to combat stigma and provide resources for learning about Stiff Person Syndrome. The conversation concludes with Tisha sharing her plans for future books and Tim expressing gratitude for the support and encouraging listeners to continue spreading awareness.
Takeaways:
Living with an invisible condition requires strength and determination.
Sharing one's story and being vulnerable can help raise awareness and end the stigma surrounding invisible conditions.
Support and understanding from others are crucial for individuals living with invisible conditions.
Education and advocacy are key to improving the lives of those with invisible conditions. Normalcy is subjective and can vary from person to person, especially when living with a chronic condition.
Education is crucial in combating stigma and promoting understanding of rare conditions like Stiff Person Syndrome.
Advocacy and sharing personal stories can help raise awareness and support for individuals with chronic conditions.
Continued support and engagement from listeners are essential in spreading awareness and ending the stigma surrounding chronic illnesses.
Chapters:
00:00 Introduction and Background
02:17 Living with Stiff Person Syndrome
05:08 Diagnosis and Name Change
08:01 Bedridden and Dark Thoughts
16:12 Determination to Wear Heels Again
23:21 The Power of Vulnerability
33:48 Breaking the Stigma
46:26 Normalcy and Accommodation
47:21 Education and Stigma
48:28 Advocacy and Resources
49:19 Future Plans and Conclusion
Transcript
Tim Reitsma
Tisha, thank you for joining me on the Invisible Condition podcast. You reached out to me through the power of social media. You found one of the posts, liked what it said, went to the website, sent me an email, and here we are recording today. So I really appreciate you taking the time and reaching out.
Tisha Foster
I really appreciate you replying. Thank you for your time as well.
Tim Reitsma
Yeah, you know, you reached out and said, hey, maybe consider doing an episode on stiff person syndrome. And honestly, I had never heard of stiff person syndrome before you reached out to me. And so before we get into that, why don't you tell us just a little bit about who you are, where you are and what you're up to.
Tisha Foster
Well, I am, well, my name is Tisha Foster Foster. I am born and raised in Brooklyn, New York. I now live in North Carolina. I am a mom of two sons. I am a grandmother of a six-year-old boy and a one-year-old girl. I'm an ex-model. Most importantly, I'm an author of “My journey with God through stiff person syndrome.” Stiff person syndrome is a rare neurological autoimmune disorder.
I've been living with it for, let me rephrase that. It's been living in me for 13 years. And the reason why I say it's been living with me is because I no longer allow it to control my life, take over my life. I live life by the grace of God. I get up in the morning and he give me grace and I hit the ground running.
I'm not going to say I am a Wonder Woman or anything, but I can do a lot more than most, and I'm grateful for that.
Tim Reitsma
When we connected a few days before recording this and, and what you said really stuck with me. And I've actually talked to a few people over the weekend over the last few days about this is it lives in me. I don't live with it. And then you talked about like, Hey, if I could get rid of this, if I could evict it, sure I would, but it, it lives in me. It doesn't define you. And that takes a tremendous amount of power, personal power to come to that conclusion. Was it always that conclusion? Did you, when you're diagnosed, were you like.
Tisha Foster
No, and not at all.
Tisha Foster
This took a lot of praying, just wanting to be a mom. I actually prayed for two things, which people still today don't even understand to wear heels.
So they call me the bullhorn in stilettos now. So the bullhorn is me spreading awareness about stiff person syndrome. And the stilettos is I'm now wearing heels, which they were stripped from me when I was, not exactly when I was diagnosed, but maybe two, three years later into my diagnosis. I was an ex-model, so there was, you know, that no longer exists in my life because I couldn't wear heels. Not to say models, um, always have to wear heels, but I was that model that wore heels all the time. And not just the fact that I was a model, I liked wearing heels. It made, heels are for me, it makes me walk different, look different, stand different. It make me feel different, like every essence of a woman, I just love tills. And that's exactly how I knew that something was going on with my body in 2009. Because, exactly.
Tim Reitsma
You knew something was going on, weren't able to wear heels, which was your livelihood and a connection for you. It was more than just putting on a pair of heels. It had some more personal meaning to you.
Tisha Foster
Mm-hmm. Yeah, not just because I was a model. I like the way I look. I like the way it made me feel, yeah.
Tim Reitsma
Yeah. And so you were diagnosed with stiff person syndrome, but at the time it wasn't actually called stiff person syndrome.
Tisha Foster
It was called stiff man syndrome. So, but before that, they had diagnosed me because it was so rare, 2009, 10, 11, it was so rare. At first they were saying it was one in a million. Now it's one in every two. To me, it's just a rare, it's just rare. I don't get into the millions and that, it's rare. That's just it for me.
I, everybody choose their words different. I totally choose my words different from others. What gravitating me to you is because you use the word condition. I use the word condition because if it was a disease, then all the medication that they prescribe you with, you will be healed. But the medication can heal you, stabilizes you. So it's a condition. That's just my opinion.
Tim Reitsma
Mm-hmm.
Tisha Foster
And as I always say, you know, and not everybody want to hear my opinion, but I'm going to give my opinion whether you want to hear it or not, because it lives inside of me. So that's my opinion. But yeah.
Tim Reitsma
Yeah. So 2009, 2010, 11 in there working through the diagnosis, you're diagnosed with something else, right? You're diagnosed with
Tisha Foster
I was saying, okay, so it started, okay, so we have Thanksgiving, then we have Christmas, and then we have New Year's. So New Year's 2009, right after New Year's, it was time to go to school. We know the kids go to school after New Year's. My son was, he was in pre-K. And his aunt owned the center where he was attending school.
So I would take him, which it was very convenient because I would take him right next door, but I had to take him up the steps to go to enter her house. And I went to go take him up the steps. I felt a little pain in my back, but when I went to go put my foot on that first step, I was like, dang, something is not right. But I'm thinking because I done partied in War Hills, Thanksgiving, Christmas, New Year, just partying my life away.
And then when it was time for me to step on the step, once I picked my leg up, I was like, wow, I just felt a sharp pain. And I'm like, this is something different. So I actually grabbed onto the bandstand and I just pulled my way up. And I told, you know, I let, she let him in and I went down and I held on. And I said, you know what, maybe I should take off. And I was like, no, I'm just gonna go ahead and go to work.
Boy, oh boy, that day was a wake up call because I had to take the subway. I was living in Brooklyn, New York at the time. I took the subway. And then I dropped my glove. And a gentleman tapped me on the shoulder and said, excuse me, you dropped your glove. And I was like, oh, okay. And thought that I can bend down to pick it up. And that's when I realized, wow, something is really wrong. Cause my body would not bend. I could not pick that glove up. So I left it right there and went to work. Got home and my back was on fire. I'm like, what is going on? Tried it again the next day. My godparents said to me, girl, if you're doing all of that, you need to stay home. And I'm like, yeah, yeah.
Tisha Foster
It's just that I party too hard. You know, I party. You know, when you model, I wasn't a model every single day of the week. I still had a life, I still had children. So that, you know, those couple of days, I'm gonna say that week, for that week I continue. And as I do in this life right now, today, I just keep pushing, I just push and push and push and I'll find a way and I'll find a way and I'll find a way and I just keep pushing. And I did that for a week until I was like something is wrong and then it went from my back to into my um the trunk of my stomach. Then I began having stomach stiffness, muscle stiffness, I should say sorry, muscle stiffness. I'm like all right yeah.
Tim Reitsma
Wow.
Tisha Foster
I went to the doctor and they were telling me that I was in early stages of MS. They do have a little bit of a similarity.
They did that for two years. So we 2009, I was diagnosed 2011. So all this time they were treating me for early stages of MS and then just with all extensive blood work one day I can remember her face she came back and she said You're not living with MS. Too many other things were progressing especially with the spasms, I would have spasms so bad, they would take me down to the ground. But what was spasms come with triggers. And one of the triggers living in New York, for me, was cold. Cold, sudden, sudden noise sudden startles. I would just hit the ground. Wherever I was, I couldn't have a spasm sitting in a chair, I couldn't have a spasm standing up. I would always have to be down on the ground. And where it would happen the most is in the shower.
I guess it was the water running, the shower. In the shower and outside, in the middle of the street where they're blowing the horns. And I would just fall and I would fall and.
I questioned it, but in hindsight, you're like, mm, if God would have left you, you know, you wouldn't be here. Because every time I fell in the middle of the street, I never got hit by a car, but I was always under a car. So I was like, you know, now I'll say, well, I should have been a mechanic, because every time I opened my eyes, I seen the engine.
Tisha Foster
But yeah, so yeah, it just, one thing about Sick Person Syndrome, it doesn't come alone. So I do, Graves' disease has crept in my body as well. I don't want, I just...
I'm waiting for God to give me a completion of a healing. But I know that the enemy is riding me because I am blowing his bullhorn like never before. And I was even just diagnosed with boarder line diabetic. However, what I'm being told is that I'm a tough case because they're testing the sugar that's in my body and she's like there's no way you can be diabetic because there's no sugar and you're so thin. But it's my
Tisha Foster
It's not allowing my pancreas to produce what it's supposed to produce, the levels.
Tim Reitsma
Mm-hmm.
Tim Reitsma
Wow. Well, first off, thanks for sharing your story with me and with the Invisible Condition audience. You have a powerful story, right? You've gone from three years of diagnosis, initially MS, to then being diagnosed as stiff man syndrome. And, you know, again, we were talking.
Tisha Foster
So yeah.
Tisha Foster
Mm-hmm.
Tisha Foster
Stiff Man Syndrome. And then they said, stiff man syndrome. I'm sorry, stiff man syndrome. And, oh, and then they was like, well, I'm confused because when we looked it up, it said it was a man, heavy built and he's athletic. Here it is. I'm a 5’9”, 40 yr old woman and it's in my body. Where we going wrong?
Tisha Foster
So y'all must be wrong again. Go back, go back, do some more research.
Tim Reitsma
I can imagine getting that diagnosis and looking at the person and just saying like, no, that's wrong. Yeah, last I checked, I wasn't a man.
Yeah, exactly. Like go back and do some more research. What are you talking about? Like what is it? Like what? And then I remember the first thing I asked was, is it fatal? I asked, is it fatal? And they weren't even knee deep into that to if they couldn't even tell me whether it was fatal or not. I began researching it myself. I have kids. Like, you know, one of my sons were bored. I don't
Tim Reitsma
Mm-hmm.
Tisha Foster
I'm like, hold on now, is this fatal? So yeah, they wasn't even sure about that. Oh my goodness gracious. Yeah.
Tim Reitsma
And here you are.
Wow. Yeah. They've now changed the name. I did a little bit of research and it wasn't that long ago, but they were like, actually, you know what, we're diagnosing more women than men. So we better change the name of this. And here we are at stiff person syndrome, SPS.
Tisha Foster
Mm-hmm.
Tisha Foster
2024 we had SPS. It went from stiff man syndrome, stiff person syndrome. They did it. I'm like, all right, I'm just gonna arrive with it and roll with it.
Tim Reitsma
Yeah. You just know how it shows up in your body and you just go along with it. Yeah.
Tisha Foster
Yeah, I don't, but yeah, that's what you're supposed to do.
Tim Reitsma
Yeah, you're supposed to go along with it, but you're like, you're the opposite of that. You're just like, no, I, you set a goal, right? You said, I'm gonna wear stilettos again. And you are, you're called the bullhorn in stilettos. You're telling people about Ziperson syndrome. You've been on media shows, you wrote a book about it. I wanna talk about the book journey here in a minute as well, cause I'm fascinated about that. And you wanted to get back in stilettos. Were you ever told, you're in stilettos. Were you ever told that?
Tisha Foster
Yeah, I don't. I don't.
Tisha Foster
I missed the light-outs. Yeah.
Tim Reitsma
you won't be wearing stilettos ever again? Was that ever told to you?
Tisha Foster
Yeah, yeah, yeah. Well, I was actually bedridden for three years.
Tim Reitsma
Oh wow.
Tisha Foster
Yeah, I was bed bound for three years. I was bed bound, I was crawling. Okay, so again, living in New York, it's cold. And cold is a trigger. And I can remember, it was maybe, so that happened in January when I went, when I stopped working. And then February.
Like my body was basically, it was basically progressing in my body. My body was basically metamorphosed. So I'm gonna say February because it was snowing. My son is four.
I still don't know what's going on at this point. I'm still with the MS, basically. So MS, and I'm like, oh, wow. It's cold. And I said we got out the vehicle. And I said to him, I said.
Tisha Foster
How would you feel about us playing the game? It's freezing outside. I know it's cold, we are, you are as well, but it's freezing outside. And I'm like, how would you feel about playing a game? And he was like, what? It's like nine o'clock, he don't want to school, he tired. I'm like, let's crawl to the house and see who gets to the house the fastest. He was excited, like, oh, okay. So we crawled. And that became my life for three years, crawling.
I've got different opinions in three different states.
But I crawled for three years, I was bed bound. I was no longer, well, of course, whether you bed bound or you're no longer driving. But being bed bound, and this is where I wanna talk to anyone. That's in my position or in any position. Being bed bound will lead you to a dark place. And I was in that dark place.
My mom, I'm an only child. My mom stepped up to take care of my baby boy. And I was becoming resentful against her because my prayer was to be a mom. When I had my first child, I was 20. I had my baby boy, I was 34, I was ready. I mean, I love both of my kids, but I was ready to be a mom. And then 37 is like, what's going on? So, yeah, she was doing everything that I wanted to do that I didn't do at 20. And...
Tim Reitsma
I can imagine that dark place.
Tisha Foster
I was contemplating suicide and I wasn't liking her. I didn't even like myself. I felt worthless, useless. Like, why am I even here? I'm just laying here. And I can remember thinking, she taking me to school in the morning anyway, so I can't do nothing for him, even though I wanted to be his mom. And I was like, I'm just gonna take my own life. But I'm an only child and I-
Figured that wouldn't be fair to my children, you know, my parents, not even to myself. Like fight, I didn't know how to fight at first because I thought I had to do it on my own. Boy, oh boy, when I realized this was not my battle, I said, okay. So I turned over and I had a huge picture of me with my children that we had took at a studio. And I looked up at the picture and I said, I'm going to do it for y'all. And that's what I did. From that day, I knew I was not going to let stiff man syndrome, stiff person syndrome, SPS take me out. And what my son does now is when I get blood work back, he always watch my demeanor. He always he's always watching me. Just to see. And when I get like now they're telling me I'm borderline diabetic and I'm like, okay, that's what y'all say. I hear that. So I'm not playing with that. But a lot of times I would say.
Tisha Foster
By his stripes, I am healed. And my son-in-jure, because my son is the one who does all of the harnessing stuff for me. He said, sometimes you have to live in reality. I said, I am. This is my reality. And he said, no, because you will confuse people when you say I'm healed. But if you understand my faith then you would understand where I'm going with it. By his stripes, I am healed. And I have to stand on that. Oh, why you, oh, I was invited to a Viva Prop party for someone else that was, that is, that's dealing with, that it's living inside of them as well. And I said to her, I said, I don't wear stripes.
Tim Reitsma
Mm-hmm.
Tisha Foster
I don't want to be striped. I'm not going to come to your party if stripes is what I have to wear. I'm not wearing a stripe.
I mean, do I have good days and bad days? Yes, but I have more good days than I do bad days. I have 97% good days and the bad days is like gone. So for me, I'm healed.
Tim Reitsma
Mm-hmm.
Tim Reitsma
Yeah, that story really resonates with me. Three years ago, it's when my Crohn's came out of remission with Vengeance. And a pretty active guy. I've got two young kids at home and kids wanted to go outside and play. And I just had no energy to do it for, for so long. And I thought this isn't the life that I envisioned for me and my kids and for my wife, who was my primary caregiver.
And those dark thoughts come in and those dark thoughts start chipping away if you allow them. And I allowed them for a while. And until one day, I still remember the day, it was a December, and I texted my pastor at my church and was like, I'm struggling. And he was at my house within, you know, 30 minutes and walk in, we went for a walk and we prayed. And, you know, I wasn't healed.
Tisha Foster
Yeah.
Tim Reitsma
from the perspective of Crohn's, but I felt a weight lifted off of me. And that's when I really realized that one can't hide, can't hide what we're going through. We need to step out vulnerably. Maybe we'll talk about that in a minute too, is there's power in that. It's not giving our condition a voice, but it's bringing voices into our condition to...
Tisha Foster
Mm-hmm.
Tisha Foster
Mm-hmm.
Tim Reitsma
to help minimize what's going on. And two, that there's something greater at play than me in this world. And there's things worth continuing on for. And that is, you know, for me, I look at my two little kids and for you, you look at your then your little boy and your elderly son and your only child. And here you are, you are that bullhorn in stilettos. You're telling people, you are bringing awareness to this condition. And
Tisha Foster
Yeah.
Tim Reitsma
It takes a lot of vulnerability to not just recital that with yourself to say, Hey, it lives in me. I'm just going to stay quiet. You know, if I have a bad day, I just stay home. But you are, you went to the extent of writing a book and I know people who say, I'm going to write a book. I'm one of those people I'm going to write a book and I've never written a book, but I think I've started three copies, three different versions, but you went all the way into that. What made you step up vulnerably and say, Hey, I am going to educate people in this.
Tisha Foster
Yeah.
Tisha Foster
you and I believe. So us, I know I'm not the only person, we try to bargain with God. I know I did. So I said, God, if you heal me, give me some of my life back. I'll tell the world. I do travel a lot, but there was no way I can travel and tell the world. Like, come on, really.
I put pens to paper. I put pens to paper and um.
Tisha Foster
It's so crazy when they say they laugh, they cry, they laugh, they cry. My family didn't have a clue. That's something else I didn't share neither. I didn't tell my family. I don't like pity parties. I didn't want the, oh, you need help over here. Oh, we need help over here. I need one person.
That's my heavenly father. He gonna get it done. And as Corinne said, he get it right the first time so he don't have to do that. You don't have to do back twice because he get it right the first time. But yeah, other than me just trying to bargain with him, I told him I would tell the world. And so I had to figure out a way how I would tell the world.
Tim Reitsma
Hmm.
Tim Reitsma
Mm-hmm.
Tisha Foster
So that's how my journey with God, with stiff person syndrome came about. Even with wearing heels, before that movie, War Room came out, I think it's War Room, I had a prayer closet and didn't even know that somebody else was thinking what I was doing. I literally took everything out my bedroom closet and I had a bunch of sticky notes all over the wall.
And I was going there on Saturdays and asking, can I wear, I never stopped buying heels. I never stopped buying heels because I was determined to wear heels again because I love the way I'm wearing heels. I was determined to be this boy's mother because I asked for him. He was playing in them.
Tim Reitsma
Mm-hmm.
Tisha Foster
So I used to go in the war room and I was like, listen, God, I'm gonna tell everybody, just carry these hills to church tomorrow, and he would grant me. And the pastor says, teach him, every Sunday you come here, you're looking tall and tall and he's so short and he's looking up to me, he's like, you're looking tall and tall every time you come to church. And that's because God was granted.
And that's why I use the terms that I'm healed, because everything that I ask him for, he grants me.
Tim Reitsma
I love that. Thanks for sharing that. It's a, it's a powerful testimony. And, uh, I'm curious, do you have a favorite pair of heels?
Tisha Foster
Yeah.
Tim Reitsma
Or all of your heels are your favorite.
Tisha Foster
Yep. All of my heels are my favorite, but there are two pair that I did not get rid of. The pair that I wore to, so you never read the book. But the pair, it's on the way. But the pair that I wore to church when I was living in Virginia. So when, after I got diagnosed, it's just, this is why I had to put it in the book because it's just layers to this stuff. So after I was diagnosed, and I was diagnosed with Graves' disease. Graves' disease, I had a thyroid storm, which almost took my life. My mom came and said, look, you come with me to the gym. My mom was in the gym. So she packed me up and took me and my kids to the gym.
Tim Reitsma
Hmm.
Tisha Foster
In Virginia, all I was asking for was prayer. Even from the people I didn't know, like, oh, my mom's friends will come and be like, oh. And my mom was like, oh, my daughter's going through, you know, stick man syndrome. And I was like, oh, I want this prayer, like, hmm. Cause I didn't like the pity party. You know, I don't, oh, don't, ooh. Oh, I didn't want that. No, I need this prayer. So one day in Virginia, I went to church and they, took me out of church into an ambulance because I was having a muscle spasm. And I was so mad at God. I was like, and that's why it's called my journey because I was on a journey with him and he never left me. But I was so mad at him. I was like, all I wanted to do was hear the word. All I wanted him to do was just pray for me. And that's how that came about. I was on a journey with him. Yeah, I thought he left me.
He never left me. He was just waiting on me to get together like, listen, you need to get it together. So it's those. And it's a pair that my son wore me. But do I have a closet full of heels? If I show you my closet, you would go insane.
Tim Reitsma
Hmm.
Tim Reitsma
So you promise, you got to send me a picture of your closet full of shoes. I would love to put that up on the website when we post the episode. And because I think it's a testament to saying, hey, I'm not going to give this up. And you know, my journey with Crohn's, I used to be an avid mountain biker. I live in Vancouver, British Columbia, Canada, close to a whole mountain range full of mountain bike trails. And I grew up on my bike and love mountain biking. And
Tisha Foster
Okay.
Tim Reitsma
I was laying there and I didn't have energy to ride my bike. And I thought, I'm going to sell it. I'm just going to sell my bike and that's it. And, you know, it sat in my garage. Here's this mountain bike worth way more money than I care to say, it was worth a lot. And yeah. And so there it was sitting, it sat for almost three years. I would dust it off. I would put air in the tires. I would sit on it and then think,
Tisha Foster
I can't imagine how much I'm not invited for.
Tim Reitsma
I don't have the energy to bike up a mountain, let alone ride this thing. And when I made a promise to myself that when I have surgery and when I get better, I'm not gonna ride this bike anymore. And I ended up selling that bike, but I bought a bike that I could use with my kids, that I could ride, it's called a gravel bike. I could ride trails and really enjoy rather than this. And I miss my mountain, I miss being out there, but it was, hey God, like.
I just, I really want a bike with my kids. It's all I want to do. And ended up selling that bike. I used all that money and bought a new bike and I won't sell it. Even if I outgrow it, it's just one of those things where it's like, you know that your journey, right? Those heels, you might, they might be the most uncomfortable thing. Then in five years, 10 years, you're like, I can't wear these, but you will not get rid of them because they hold that value to you. So yeah, I could completely relate to that.
Tisha Foster
Yeah.
Tim Reitsma
And I'm curious, so the word vulnerability, this is a word that's been floating around in my mind for a bit. I've had a few conversations with people about vulnerability, the power of vulnerability. Why do I share openly? You know, we heard a little bit of your story of why you share openly. If somebody is living with an invisible condition and feels that call in their heart to say,but are afraid, afraid to, maybe there's shame, maybe there's past fear, maybe there's something going on in there. What would you tell that person? What would you say to someone who's listening and is feeling that calling to tell their story?
Tisha Foster
You're not alone. Too many, this world is, it's too many people that are dealing with this same thing, but how would someone know if you never say anything?
And that's from my own experience because I didn't tell anybody. So how would my family know if I, well they didn't know until it was too late. It was too late. It wasn't me telling them, it was the doctors telling them because I had a thyroid storm.
If you want to help someone share, that's how you help other people share it.
Tim Reitsma
What, so you held it into your story, right? Your thyroid storm, you held it in. What, you know, it sounds like you almost had to share because the doctor said to your family, what kept you from sharing? Yeah.
Tisha Foster
I held it, right, me saying that, yeah.
Tisha Foster
I had to share.
Tisha Foster
But it wasn't fair, it's not fair. It's not fair, fear, it was a fear, it was fear. But for me, it was the fear of what to share. I didn't know what to share. I didn't know enough about it and neither did they. I didn't know what to share. But if I mean...
Tim Reitsma
fear. Yeah.
Tisha Foster
That's a really good question.
I mean, to share is easy, to say it is easy. Share it, because I'm sharing mine. But however, that's a really interesting question.
Tim Reitsma
What's, what is coming up for me, even as I asked a question, I squirm in my chair a little bit of, I'm like, don't, don't ask me that question. Anybody have, but it's the same things as it's easy to say, oh, just share because I'm sharing my story or you're sharing your story. Previous guests have shared their stories. So why not just share? What somebody said to me is, and you're alluding to it too is
Tisha Foster
Mm-hmm. But yeah, it's easy. Mm-hmm.
Tim Reitsma
What's that?
Tisha Foster
Backlash, stereotype, that's what's coming. It's coming, it's coming, it's coming. Yeah.
Tim Reitsma
Yeah, the backlash, the stereotype, the questions of, is this real? The questions of, are you sure? You know, I keep hearing that over and over and over. And then I recently talked to somebody who said, I was, I have these conditions. And this is who I am. Right? This is I can't change the conditions I live with. And so
Tisha Foster
Yeah.
Tisha Foster
Mm-hmm.
Tim Reitsma
I'm going to use the power of this to make my voice heard. And I was like, oh, that's interesting. And they went on to say, you know what? I'm not defined by my conditions, but if I don't share, sometimes it could actually cause me some harm. This person has seizures. If she doesn't say, hey, I may have a seizure. Um, then, and here's, here's what we can do about that. Right. She also shares out of that sense of protection.
But I've also heard from people of like, hey, maybe my story might help one more person. Maybe seek diagnosis, seek help because they haven't told a single person. And there is a power in our collective stories. And would you agree with that? Like, you know, even by us sharing, I'm learning a lot about you and just your grit and determination. I'm like, I need some of that. I need some of what Tisha has I do.
Tisha Foster
I am determined. I'm determined to make them hear me.
Even for the ones that don't want to hear me, I'ma speak. Anyway, you're gonna hear me. It's inside of me. You're gonna hear me. We need help.
Tim Reitsma
Yeah. If we don't imagine, imagine a world where we were diagnosed with something and then just told not never to talk about it ever again. That'd be terrible.
Tisha Foster
Have you ever been, well, I've been turned away from, and I'm gonna call the name as well, from Dr.
Tisha Foster
thing. Anybody want to him?
Tisha Foster
Mm. I just went blank. Um.
Tisha Foster
He's in Maryland. Everybody, Dr. Newsome at John Hopkins. He turned me away because he said, and then I read a post a couple of days ago.
You turn someone else away because their GAT levels weren't as high as he wanted them to be. So you gotta be sick, sick in order for him. Okay, so I discussed this with a doctor as well. So he wants your GAT levels to be really, really high because he wanna deal with the sick, sick people. And she was trying to get me to understand it, but to be turned away, from a physician when you're going to something and or you're looking for his help.
He'll turn your way with no recommendation.
So I read a post and this woman post about it and I've been talking about it. And then in every interview, I've been done tons of magazines, podcasts, talk radio. You can't, I can't say what he can't do. What I don't like that he does is he turned us away without saying, well, hey, you can go over here and try to seek help.
He'll just turn you away. And this lady didn't have any anywhere to go. She was asking, did anyone know of a neurologist? How do you turn someone away because their GAT level is not as high as you want them to be, but they need help. Okay, you wanna help the sick sick, but guide them and try to guide them at least. He'll turn you away and it is what it is.
Tim Reitsma
I've heard other stories of that. Some I heard a story of someone who battled eight years to see a neurologist to get a diagnosis and same thing, the levels weren't what they weren't high enough, quote unquote, found a doctor. The doctor said, absolutely, we need to do surgery. And they showed me a picture of a scar, a recent scar right across their skull to relieve pressure in their brain. For eight years, they struggled with this. And so, and you know, I know doctors are busy and if maybe doctors are coming up on the podcast, I have a few doctors coming up. And I think that, I think it's the level of self advocacy we need to do on our own, as well as also letting doctors know, hey, here's how I'm feeling. Because I'm grateful that lady who turned maybe to social media or wherever you saw her, her comment, because how many people don't, right? Takes that vulnerability to say, I was living with something. I need it. I need support. Anybody know anything? Like even just to put that out there into the big scary world is so vulnerable. And, and yet if we don't, nobody will ever know and we won't be able to help others. And so there's so much power in our collective story. And as I look to wrap up, I always ask this for my guests, I'm gonna ask you too, is when you think of the stigma that surrounds invisible conditions, how are we gonna end the stigma? How are we going to change a world where our kids are gonna grow up, your grandkids are gonna grow up, where if they're living with something, they're not afraid to talk about it. And society, workplaces, schools we'll also embrace people who live with something that's invisible. How are we gonna end the stigma?
Tisha Foster
what we're doing right now. We can't do no more than what we can do. What we're doing right now, just spreading awareness and hoping that people, educate themselves more. And that's the most important part is educating yourself. I mean, you can't see it. I think I even told you about, we're trying to,
Tisha Foster
uh, get different license plates to say, okay, we don't have the same blue license plate because with the blue license plate you can see the, the uh, I mean the license plate. With the blue um, handicap plaque you can, you know that there's a uh, a handicapped person or a person with a disability in the, in the vehicle or whatever. Um, with a different color they have a disability as well, but you can't see it, but they're disabled, like you leave them alone as well. You know, we have to start pushing for things like that. Like what's the norm for a regular person that has a disability? We have to start coming up with things that say, hey, we over here. You can't see it, but we over here too. We need help as well. And whatever the people that have access to things like that, we need to try to make it available to the ones that you can't see it, so that we can be treated the same way, with the same respect, with the same attitudes when you're doing the same thing that a person that's a visible disability has.
And we are not turning the blind eye, you know? I think for the most part that would help, I would pray.
Tim Reitsma
Oh, that resonates with me so much. Right? You shared a story when we first connected, if you didn't touch on it today, we'll touch on it now just briefly, just about not being able to cross the street for 10 years. And because of...
Tisha Foster
I'm telling you, it's so many layers to my story.
Tim Reitsma
So it's like, you're not just like, there's the fear of crossing the street, but also that's when you said you also had a lot of stiffness and would fall down. And as you even alluded to that living in New York, like you could have been a mechanic, you're falling down, not getting run over by cars, but you're like doing an inspection of the undercarriage of cars. And so having that accessibility to say, look, like I can't, like physically,
Tisha Foster
Yeah.
Tim Reitsma
I look quote unquote, I like to use the word normal. I look like an everyday person, but yet there's something that's inside me. Yeah.
Tisha Foster
No, you think normal would be the correct thing. I look, yeah. Okay, so before you, before Crohams, you were normal. I mean, you still are normal. You're normal. It's just that something lives inside of you, right? And it may take a little bit of accommodation to get from, you know, here to there, but you're a normal human being.
Tim Reitsma
I'm normal. This is my normal. Yeah, this is my normal. And that's why, yeah.
Tim Reitsma
Yeah, well, I think we're all normal. This is my normal. Your normal looks different than my normal. And we're all, we all have our own definition of normal. And so, yeah, I love that. Telling our story, educate. Before we connected, I hadn't done any research on stiff person syndrome. And I'm eager to read your book, to further dive into your story, to educate myself.
Tisha Foster
Yeah, absolutely, absolutely.
Tim Reitsma
I've done research, I'm gonna link to a bunch of resources on the webpage as well, because that's how we end the stigma is by educating. And it doesn't necessarily take six months to do a course, to learn about these conditions. You'll spend 10 minutes and educate yourself. So when you hear it, you're not jumping to a bias of, oh, is this real? It's, oh, wow, tell me more. And that's how we're gonna change. So.
Tisha Foster
Yeah.
Tisha Foster
Yeah.
Tisha Foster
Yeah. Did you know, I'm sorry, Tim, did you know, well, being that you didn't know, you know Celine Dion was diagnosed, correct?
Tim Reitsma
I do, yes, yes. Our famous Canadian singer and also a fierce advocate. And so, you know, we're gonna continue to add voices to advocacy. And so your book, I'm gonna link it also on the website. I'm gonna throw it out on social media as well is My Journey with God Through Stiff Person Syndrome. And so it came out in 2019. You can find that. I'll put a link out to Amazon. I think it's probably an accessible place for people to...
Tisha Foster
Okay, okay.
Tisha Foster
That's it.
Tim Reitsma
to grab it and I just thank you for.
Tisha Foster
Yeah.
Tisha Foster
Amazon, Barnes and Noble is online. Yeah, you can get it on Barnes and Noble.
Tim Reitsma
So there you go. So there's no excuse not to learn about stiff person syndrome, as well as you gotta connect with Tisha Foster. What an amazing person. I've had a couple interactions now and I just can't wait to continue the conversation. I think this is gonna be the first of many or the second of many now. And so thank you so much for coming on.
Tisha Foster
I'm sorry.
Tisha Foster
Thank you, you too.
Tisha Foster
Yeah.
Tisha Foster
Book two, yeah, I'll be back. Book two is coming out. I'm on chapter 13 now, I think, something like that. I'm on book two. I have a lot of stuff going on right now, so we'll definitely be in touch. I'll keep you updated. And I'm just missing, I'm blowing my bullhorn. I'm blowing my bullhorn. My bullhorn is stilettos.
Tim Reitsma
I love it. The bullhorn in stiletto. So, you know, thank you again for coming on. And for those who are listening, your support just means the world to me, whether it's through a donation or whether it's through subscribing to the newsletter to get updates or just giving us a rating on wherever you listen to your podcasts, that just helps us. It just helps spread this awareness and in order to end this stigma, which is what we're going to do. So,
Tisha Foster
Yeah.
Tim Reitsma
For those who are listening, continue. And if you have ideas for shows or want to tell your story, reach out to me, head to invi fill in the connect form, and I will get back to you very, very quickly. So with that, I hope everyone has an amazing day. And Tisha Foster, thanks again for coming on.
Tisha Foster
Stay blessed. Thanks, Tim.
