S8E19: MS, race and representation: why inclusive support matters

Minnie St. Claire (00:00)

I need people that look like me talking about it, even if it’s not a celebrity. And not in black history month. We’re black every single day. We’re Asian every single day. Like how my dental hygienist thinks she has MS and she’s comfortable talking about it with me. And the main thing she didn’t want to talk about it because she sees this as a white person disease. And we had that conversation and I’m like, yes it is, but you need to find out what this is so you can treat it.

 

Overcoming MS (01:02)

Welcome to the latest edition of the Living World with MS podcast. Joining me today is Camille Deondra Stewart. Known professionally as Mini St. Claire. Mini is a Canadian entrepreneur, digital content creator and advocate for financial empowerment and disability awareness. Living with multiple sclerosis and bipolar disorder, Mini manages the ongoing challenges of two chronic health conditions on navigating Canada’s healthcare system and the Ontario Disability Support Programme plus other Canadian disability benefits.

For over two decades, Minnie’s built a thriving online business in livestream entertainment, using her experience to teach others how to achieve financial independence and reclaim control over their lives, even while relying on government benefits. She’s deeply committed to highlighting the systemic barriers faced by people of color with chronic illnesses, particularly in accessing equitable healthcare, treatment and support. So firstly, welcome Minnie.

 

Minnie St. Claire (01:54)

Thank you.

 

Overcoming MS (01:55)

So, to start off with, could you introduce yourself and your MS journey?

 

Minnie St. Claire (01:59)

Yes, so professionally I’m known as Mini St. Claire and my journey to MS started with I couldn’t move my left arm. I was exercising and I thought I pinched a nerve, but my arm would involuntary move away from me like it’s snapping. So I would drop plates and like it was just this sharp shooting pain down my left side. And because it was my left side, my family doctor ordered all the tests right away. So then I saw my first MRI notes that says demyelation disease. So when they read it to me, I thought I had MS. And then the first example of MS was Montel Williams. And I thought, OK, I’ll be fine. And then I ignored it for 16 years.

I went skydiving. Yeah, I’m right handed. So my left hand, my left hand is like a prop. It’s there, but it’s not, especially now.

 

Overcoming MS (02:40)

And are you right-handed?

Yeah I’m the same I’m right-handed but all my effects are on the left side and the same like the fact that yeah my dominant hand thankfully is the one that’s okay.

 

Minnie St. Claire (03:00)

Yeah, because we need the good hand to do all the work. So yeah, so for 2013, that’s August. And then I’m doing, I’m like right away I’m sent to the neurologist and he is so chill and relaxed that he thought it was MS already and relapse remitting already, but I didn’t and then my mom who’s a nurse practitioner, they would have debates in my appointments. So it didn’t feel like my appointment if I brought my mom to my appointment, because she would always question his decision. like, he recommended a lumbar puncture, and I said yes, but then I need someone to bring me home. And I didn’t know at the time I could have hired a private agency to bring me home from medical appointments. I learned that after the 2024 when I had a colonoscopy, but like it was a lot of waiting to see if I had more symptoms because then I learned it was clinically isolated syndrome and then I skydiving and then I Developed a substance habit with a relationship that was pretty abusive. So I didn’t really take my MS super seriously until 2018-2019 when my symptoms came back, but there were my toes So my toes would curl on top of each other and I couldn’t move them like it’s like they cross over, you know they’re crossed over, you know to move them, but they don’t move until the spasm in my toes were over. So that part started to bother me a lot. And then the relationship I was in, the substance habit being a stimulant in my central nervous system, it helped my symptoms and it also made my symptoms worse.

 

So I had six years of denial, but my doctors knew what I was doing. it was just very weird of like, they knew what I’m doing. They’re letting me do it because I’m an adult but they’re waiting until I’m ready to stop. So even when I started my teraflutamide in 2019, I was still using my substance and I stopped during the pandemic because it triggered me to have a psychosis. So when I felt like I was gonna die from the substance habit is when I stopped and became sober and then I took my MS seriously and then it ended the relationship because I wouldn’t participate in its habit anymore. So now it’s just me by myself managing my MS and going to appointments and things are calmer. It’s just I learned very quickly that stimulants don’t work well for me and I probably wouldn’t take like Medafidil or any of the stimulus they give for people for fatigue because I risk psychosis for my bipolar disorder because that’s been stable since 2011 and I’m on an anti-psychotic, but I learned I can’t really add in anything that affects my dopamine and serotonin because it makes the bipolar disorder medications very angry and I have to pay attention to what I’m taking even if someone else on the outside, like family, friends, or relationships, don’t believe I have MS or don’t see it or think I’m so strong and like, I wish they would just listen to me the first time instead of, or like show up to my doctor’s appointments so that they would hear the history, the feedback, the notes that I’m going through, or like with the relationship. I would leave the pamphlet of telepflutamide around the house all the time with the side effects, like just to get them to understand, yeah, this is the illness I have and this is the medication I’m taking. Can we take it more seriously to have a healthier relationship?

 

Overcoming MS (06:14)

So we’ve got listeners all around the world and you live in Canada so could you tell us a bit about the disability system there and also how you’ve managed to build wealth and manage finances while on government benefits?

 

Minnie St. Claire (06:37)

So I’m in Ontario, so for Canada there’s a provincial program for each province. Then we have disability programs that come from the federal government that anybody could access, but each one has their own criteria and application process that your doctors have to fill out, plus we have a doctor shortage. And then some people that are on their provincial benefits, they don’t understand why they fill out more disability forms, or they don’t know why one is approved and one is denied. It’s a complicated, annoying mess, and it copies policy reform from the United States, which I don’t know why Canada can’t make their own programs for their own country for their own people, but It’s a migraine that I’ve solved the problem for myself, but it’s just not accessible to everybody either. So like I’m on Ontario Disability Support Program. I’ve been on it since 2011. And then before that I’m on Ontario Works, which is our welfare program. Both of them do not cover the cost of housing. like Ontario Works housing allowance is $390. Ontario Disability Support Program housing is 599 and the average cost of rent is $2,000 for Ontario.

The math doesn’t make any sense. And on top of it, both of those programs, they limit how much savings you can have. Like they don’t stop you from having savings, but a lot of people on disability programs, they’re not supposed to save any money when it’s more the financial education out of it of yes, you could save money, but then if you save more than what the limit says, you’re free. Like, I don’t understand why people don’t know that this is the path to freedom if you’re able to work with your disability and save and have a good career to build your savings because you’re going to need it when you’re 65 because poverty level senior benefits don’t really include people with disabilities and they’re less money than what you’re getting when you’re before 65. Like it’s already built into the system of letting you know that you are responsible for your savings. Good luck. Like it’s

 Every time they launch a savings program, like we just have the new first home savings account where if you never bought a home before, you can save into this account. And most of them all have the word savings in it, but they could be investments in the stock market. So the whole program is not fully educating people what they’re supposed to use it for.

Overcoming MS (09:01)

Yeah, we have a similar thing in the UK where the homebuyer, so you get tax benefits on the savings, but you have to use the money to buy a house, buy your first house. Is that the idea? So you’ve mentioned bipolar, so you’ve got multiple conditions, you’ve got multiple sclerosis and bipolar as well. So how do you navigate life having both MS and bipolar?

 

Minnie St. Claire (09:10)

Yeah, for us is within 15 years. Yeah. And yeah, there’s also ADHD, PTSD, complex PTSD, but I didn’t want to list all of them. So basically, so with bipolar, because it’s been stable, so it was a lot of therapy, cognitive behavior therapy, different rehab programs, like I did a substance abuse program during the pandemic. That part is mainly because of my doctor. She’s pretty awesome in the beginning in 2004 of referring me to every available program that we had.

 

And the waiting list was shorter. Now, if I went through a psychosis or depression again, I wouldn’t get the services I need quickly. I would have to wait or I have to find a private practice that’s taking patients and then pay their fees. And then the government said there’s no taxes on paying for psychotherapy, but psychotherapists kind of want you to be there weekly for three months. And that adds up to maybe three thousand dollars. So it’s still not accessible even though I found a collection of private therapists I could see and some of them offer free programs if they’re connected to a government program. But it’s not as quickly as it was when I was younger. Like it’s fully now based on, I see my doctor every month and it’s kind of like therapy, even though she’s not a therapist. It’s only because she’s been my doctor for 20 years. We just have a language of talking to each other of like, what’s my blood work? What’s my exam? And yeah, this is happening at home. And she’ll make her comments. And it’s just, we just have this, she’s my extended mother is pretty much how our relationship is. But if I needed more services, I pretty much have to hope and pray I get into a waiting list under two years. And not get like psychologically worse. Like when I had the substance habit, I was pretty much at my edge, but I was, I still have my last therapist from 2020 for 10 years that I saw every other week.

And then she graduated me and then I finished and then I went into different crisis programs that are available during the pandemic, but they’re not available anymore. And then for me to go back into them, I don’t really want to see a therapist or counselor that’s younger than me because I’m 40 and half my life experience is before they were born. It’s very difficult to talk to them.

 

Overcoming MS (11:36)

Yeah and the other thing I’d say you sound like a very switched on person. I always feel for people who are not as I don’t want say educated not necessarily educated but they’re not as switched on they’re not as clued up and then you sort of think there’s going to be a lot of people who fall through the cracks who don’t know all these things.

 

Minnie St. Claire (11:52)

Yeah, there is, there’s many and I’ve met them. They, like some people I’ve met, they need someone to give them direction for everything. I will Google something till six o’clock in the morning and bring it to my doctor to fill out a referral. Or I fill it out halfway through and she just signs it. But a lot of people don’t have that skill. So it’s very sad of like how not everybody equally has exactly the same illness or symptoms or self-sufficiency or drive to manage their health and prepare for resources if they need them. Because a lot of people have been messaging me for my answers and it’s like, yes, I could, but I’m not being compensated. So it’s, have to cut back of being such a nice helper and save myself.

 

Overcoming MS (12:39)

So what would be your top strategies for your day-to-day resilience then?

 

Minnie St. Claire (12:44)

Well, I live alone and there’s no children and no pets. So it’s just, I get to be 100 % selfish, which my family hated, but they don’t get a vote. I left home at 18 and I took it. So leaving home at 18 and I was selling my dad’s insurance at that time, I went in therapy right away. But when I was living at home, my family cut off therapy. They felt I would talk about them and it would ruin them. Not really. It’s about me. It’s about me getting well and reducing all my illnesses at that time that were pretty active. And then even high school, I couldn’t move my left leg, but my family didn’t want to order the tests the doctor was recommending. And we could have found MS earlier, just my family didn’t want to know the answer. And it’s weird because majority of my family work in health care. Like, and my grandmother works at the hospital. I get treatment. It’s a them problem, not me, like denying my illness or symptoms or think I have to push harder. I push harder, but I know how to rest and sleep for six hours a day. it’s just the weirdest thing of I take care of my health and I get judged by my family, but if I didn’t take care of my health, they wouldn’t have me to have the argument with.

Yeah, it’s like some of my family, my aunt’s pretty good at it. Like I gave her all the podcasts and information of me having MS, because it’s MS Awareness Month. And she was okay with me not being there for Thanksgiving last year, because I was going through treatment. I got to switch from terafluidamide to mavenclad, because I had a relapse in August where I had worsening symptoms on my left side and new symptoms on my right side. And because both hands are unavailable.

I was in the emergency room trying to figure out what was happening. I wasn’t thinking of Thanksgiving at all. Like, you saw me at the barbecue in the summertime. That’s plenty of family. Let me take care of my health. But I end up getting a guilt trip about the whole process out of it. Even now, when I say it out loud, yeah, it’s OK to be completely selfish and take care of yourself and let your family be angry at you. They’ll get over it or they’ll send money.

 

Overcoming MS (14:42)

So you mentioned you’re at home and so what’s your at-home fitness routine? How do you manage the fitness side?

 

Minnie St. Claire (14:49)

So I am a brand ambassador for one of the health and fitness companies. And they have an app where it has lot of sample workouts. And I’ve been pressing play. I do as much as I can. And then once I reach the exhaustion, I stop. So I’m working out about 10 minutes a day, which some people think, that’s not enough. It actually is. 10 minutes is fine because you got your heart rate up. You’re moving your body in different positions. You’re stretching something. You’re doing squats and these workout programs.

 

They move really quickly. With MS and your body moving slower, yeah, you’re reminding your body to move again or wiggle your toes or be able and squats help you get off from the toilet. It’s the most important thing. mandatory at least be able to stretch enough to get off from the floor or the toilet because I’m learning that’s the most important thing out of all the exercises at least. And then if I’m slower, that’s fine. I do it again tomorrow morning or I do it again in the day or I go out and go for a walk, like there’s a cemetery near me that has this figure eight shape walking path. I’ll walk through it, that’s about a half an hour, an hour, or I walk for 15 minutes to a direction, I walk 15 minutes back and I’m fine. And then yes, eventually I’ll have dumbbell weights and Pilates and things like that, but for the most part, I know I need to move for 10 minutes to a half an hour.

 

Overcoming MS (16:09)

And I think you can’t compare yourself to the pre-MS you can you? That’s the thing for me.

 

Minnie St. Claire (16:15)

Pre-MS me was mostly bipolar, so I can’t even… I’m a different person, yeah, because it was a different illness and a different… I would be up three days at a time, so… And now bipolar and MS, they have an argument, because I’ll have ideas that keep me up at six o’clock in the morning, but I don’t physically have the energy to do anything. Or I have the energy to do something, and then I sleep two days later, so it’s…

 

Overcoming MS (16:19)

I see it as different thing as well, right? Yeah.

 

Minnie St. Claire (16:42)

They’re never seen at the same time. They’re like a Jekyll and Hyde for me, because when people talk about fatigue, I don’t really feel I have brain fog at all.

 

But then when I do have it, it’s just at the point I just need go to sleep and then wake up and I refresh and I start over again. So I’m like some of the symptoms that other people describe, I can’t visualize what they are because my body doesn’t come anywhere close to it. It’s a different adrenaline that I have that comes with it.

 

Overcoming MS (17:12)

Living Well with MS is listener supported. If you would like to help the charity create more episodes and other resources to help people live well with MS, please visit donate.overcomingms.org to make a donation. Or check out overcomingms.org forward slash fundraise to find out more ways you can raise money for overcoming MS.

 

Overcoming MS (17:35)

Because overcoming MS promotes healthy lifestyle, so we mentioned exercise, another one is diet. So I believe that you’ve found that you use meal planning to help you stick to a healthy diet. So how does that work and how does that help you?

 

Minnie St. Claire (17:51)

So me budgeting and buying my groceries, half of my budget is vegetables and fruits. And at first it was hard to do, but then I mostly stuck with the same vegetables and fruits I had as a child. So broccoli, carrots, bananas, grapes, oranges, and then I added spinach, which is big for me, because you couldn’t get me to eat that at all when I was a kid. But I buy frozen, so.

 

If my freezer is full with vegetables and I throw them in my rice, so when I steam the rice, I throw in a frozen vegetable. So by the time the rice is finished, so is the vegetable. Yes, maybe the vegetable is overcooked a little bit, but there’s actually fresh vegetables started in the pot of water with the rice. And then, yeah, I’m not as bloated, I’m not as tingly, and my stomach feels lighter.

 

it’s working of having throw half of your meal of vegetables. And then like I still have protein, I still have beef and chicken and it’s messy because I started getting my iron and my doctors like where are you getting your iron from? Like I just started spinach but I’ve always had beef and chicken. So for me they work of having plant-based diet but the half plate of vegetables, I’m full longer. I’m not looking for food, like the way that you would get bored and open the cupboard or open the fridge, it’s because we’re bored. So usually either, if when I do that, I drink more water and then I have vegetables. And then sometimes for me, I’m okay with just cutting up carrots as if they’re chips and then I snack on them or I throw in cucumbers or the bell peppers and it’s fine because eventually, yes, I have cashews, but cashews, I added salt. I don’t buy the cashews with the salt because of the hypertension. My salt intake, I need to be mindful of that. And then when the dietician said buy plain cashews, but mix your own salt in, it tastes roughly the same. It’s just that you scooped in your salt.

 

Overcoming MS (19:42)

I think you get used to it as well don’t you? Because if I had something now which had the salt in from when I was a kid I wouldn’t be able to eat it. don’t think it’d be too salty or too sugary.

 

Minnie St. Claire (19:51)

No, there’s certain foods our brain does not remember why we ate it. Yeah, I used to eat icing sugar, like ice cream. And I tried it one time and my brain was like, why are we doing this crazy thing?

 

Overcoming MS (19:57)

I should just say, Overcoming MS promotes a whole food plant-based diet plus fish.

 

Minnie St. Claire (20:11)

Yes, and fish was the weird diet for me that it felt like I didn’t eat anything, but I was full. And then now, because there’s a lot of frozen fish options, I buy them. And then, yes, it’s fish with vegetables and then maybe there’s rice with it or maybe there’s not. But every time I have fish, I’m full way longer wondering why. Because it doesn’t have the same food sensation of beef and chicken. So I’m learning to add more fish, I’m learning to like more fish and baking in the oven is the best thing ever you could do because you don’t really have to mess with it too much.

You season it, you put in the oven for about 20 minutes and it’s ready to go. So, especially with my muscle spasms and my hands, I don’t always have the ability to chop vegetables and do all the meal prepping. So if a fish option, maybe I chop some vegetables, but it goes in the tinfoil package and into the oven. Yeah, it’s a nice option where I make like the whole fish and there’s enough portions for four days or the whole day. And I’m pretty happy with it.

The Overcoming MS diet options plant-based diet, it got me to try different foods. Like, and it got me to see the different foods could do the same thing as my other foods.

 

Overcoming MS (21:24)

So the other side of overcoming MS is the sort of mindfulness and mental health side. So anyone with a chronic illness, mental health is a huge factor. And I was going to say MS is no exception, but I believe they’ve found that actually depression is more likely for people with MS than almost any other condition, statistically. And I don’t think they know why, but it just occurs more.

Yeah, so it’s a primary symptom of the condition. So what have you found as a helpful coping strategy for anxiety, depression, mood swings?

 

Minnie St. Claire (21:58)

because I did so much therapy before from treating my bipolar disorder and depression. And then the minute I got on a stable medication for bipolar and I was in therapy, two years later I got diagnosed with multiple sclerosis. So I think it was coming because of the timeline of depression and then multiple sclerosis for me and then the connection of PTSD and multiple sclerosis. I think I’m the patient category that’s predisposed to it based on my mental health. And for me, I’m using all of the tools from therapy. And I also meet with a BIPOC peer group of women twice a week for three years. And it’s pretty awesome.

 

And I have to tell my doctor about it because she doesn’t know I found it on my own, but I’m always looking for mental health programs and if they’re focused on the black population, it makes it easier because I don’t have to over explain my lived experience. But it’s pretty much mandatory. Whether I read the Bible and then I do a cognitive behavior therapy exercise like journaling or exercise or mindfulness.

 

It comes with the territory because I don’t want to stress myself out till I get symptoms because those are not fun because you have to reduce the stress to reduce the symptoms. Because the symptoms just don’t go away because you want them to. Your body has to create the environment to reduce the symptoms.

 

Overcoming MS (23:09)

I think a lot of people find the mindfulness and mental health aspects probably the hardest thing to implement. It’s easy, you know you do exercise, you’re like okay yeah let’s go to the gym, I know I need to eat healthy food. It’s quite easy to let the mental health side slip. So how do you prioritise your emotional physical and spiritual well-being?

 

Minnie St. Claire (23:40)

It’s in my calendar. It’s in my calendar twice. It’s at 7 a.m. and 12 p.m. It’s in the calendar. Like either 12 is I read for 30 minutes or I shut down every screen I have for 30 minutes and I listen to my favorite is Joyce Myers, enjoying everyday life podcast and her Christian services. Yeah, we can turn things off and not have the TV on and not have the internet on for 30 minutes and just be still in quietness.

 

And it works. And the other thing I used to do as a kid that I’m to bring back now, I used to draw a lot and color a lot. So, and there’s really great art supplies that I really want to invest in. I’m thinking of, yeah, I bring a table that’s just for my art. And I listened to classical music and I draw because that was the really good, low stress time for me. I did as a kid that I want to bring back now. And it’s not about being good to be an artist. It’s just

 

to be with the colors and see them move together and maybe you make a picture, maybe you don’t. That environment, yes, looking back of me on the floor with all my paper and coloring books and all my art supplies and my mom getting mad at me that I made a mess, yes, it was fantastic. I’ll bring it back, yeah.

 

Overcoming MS (24:58)

So a lot of people with MS would like to continue working, but the problem they have is that maybe it’s their community, maybe it’s the fact they had a physical job, they maybe have less mobility. so it means that maybe working from home virtual working would suit them better. So how have you managed to build a sustainable online business working from home and balance your physical and mental health needs?

 

Minnie St. Claire (25:27)

So for me, I’m a unicorn. I started with an online business at 18. Like, I didn’t find one later. I started with an online business and then because of the way in 2003 people were trying to tell me that my job I was doing wasn’t real, but it paid me yesterday. It pays me US dollars in Canadian and I have to transfer it from one account to another and then file my taxes on it. Tax season is coming up, I have to gather all my receipts. So for being on the internet, you could make money on the internet being a content creator, selling other people’s products and services like how one of the fitness companies, they want affiliates, they want ambassadors that are real people using their products and they pay you a commission to sell the supplements and the memberships. That is built into my DNA of what product online or service I can sell. Maybe it’s something on Amazon or Best Buy.

 

The website you’re on, it says affiliate program at the bottom of the website is an opportunity for you to make money and it requires you learning email marketing and copywriting and maybe social media ads and running Facebook ads. That is somebody willingly paying Facebook advertisements to show you a product that they hope you’ll click on that you buy that they get a commission. I’ve been learning that the minute I turned 18 and got dial-up internet. It’s the natural thing I know how to do. Then there’s coaching and consulting and some of the disability organizations and nonprofits, they pay honorariums for different consultations, like I’m gonna be on one later today for the disability tax credit, and I make it an honorarium out of that, that is part of my income. And then some of the skills you were doing in your job before, they have an online presence in some capacity for mostly consulting.

 

So the skills we had in the jobs, they don’t go away. You just have to figure out what part of it can be transferable. And more people need to take a look at their transferable skills or skills that they can learn quickly that turn into a small business.

 

Overcoming MS (27:23)

And the way you were saying it is like many small things as well that you didn’t say, oh I’ve got one big massive money making idea, but you were sort of saying you can do this bit and that bit and that bit and that bit and they will add up to make a whole.

 

Minnie St. Claire (27:41)

Yeah, they do, because I can’t give this general advice that’s all magic and it’ll work for everybody, but I do know for my whole adult life, I make money from the internet and I’m looking how to make more money from the internet.

 

These are the ways I’m looking at making money. And it’s based on my background. And then going to college, I’m looking at the business program, finance accounting program, because how tax season is happening. Everyone freaks out about taxes and doesn’t know what to do every year. And then new immigrants that come to our country, they need help with the tax system or the financial system. So like if you’re good at explaining those things or learning them as you go and explain them to other people, people pay you. It’s the knowledge economy is one of the best things that we have and like Overcoming MS has different ambassadors who are health coaches. It’s find out all the weird things that you’re really, really good at that other people get bored of you talking about that could make money. And that could be anything because my dad does photography, real estate, and he’s a bus driver.

 

So I always grew up with my family having multiple different things that they were able to do.

 

Overcoming MS (28:44)

So one of things about MS is that women are much more likely to be diagnosed with MS than men and I’m part of an MS circle with Overcoming MS and it is dramatically women based.

 

So and apparently that also applies to other autoimmune conditions. So what’s your understanding of how hormonal changes might impact MS and other conditions?

 

Minnie St. Claire (29:09)

I learned, especially this week I had my appointment with my family doctor, because I’m still on my birth control pills and I take them back to back, I’m not fully experiencing paramenopause. Like, yes hot flashes sometimes, but hot flashes also come with muscle spasms.

 

But because I’m still on my birth control pills, they’re not full blown intense. And I learned I could stay on that till I’m 55. So that is the plan. I stay on my birth control pills till 55. It is the mood changes. Like I’m not sleeping, there’s some insomnia happening, there’s sleep apnea. That could be my bipolar, like, but because I’m in a doctor’s appointment every single month, reviewing everything, it’s not as bad as the beginning of me being depressed and suicidal in 2004. It’s just now that, the Apple phone app will ask me to check in with my mood, which is pretty great. So like, I’ll do that. And then at 12 o’clock, it’ll ask me, how was your day? And it gives me like this scale of, know, pleasant, not pleasant, content.

 

Thing in these different colors or it’s interactive to make me check in and then it has a little box in there to write more details. And then I gathered all of that and I bring it to my doctor. Otherwise I fill out the same questionnaire, scale of one to 10 with my doctor. So now that there’s more apps of gathering our mood and our shift and changes and like diet is also a connection to our mood. Like what you ate three days ago could be bothering you now or a conversation you had like.

 

Journaling, that’s probably the best way of keeping track of all the changes because they happen so fast. And sometimes they happen so fast that you don’t remember what they were. Like, last time I had ice cream, I really don’t remember, but I know I had ice cream within the month. Like, if you were asking me those questions of like when you had alcohol or like, no, not really. I don’t keep track of how many, I like, so the only way to keep track exactly that number is to journal.

 

And with those shift in mood changes and the way that women’s responsibilities of us being the caretaker, that internalizes a lot of inflammation in the body. So we need the community of taking the burden, not just us, because we’ll fall apart. Some people get adrenal fatigue.

 

That is because we feel like we have to do all of the jobs when no, we need to delegate the jobs. We need to have, if kids are able to do things, like I learned to wash dishes before my mom came home from work. It was mandatory. And now I have to convince myself to wash dishes. It’s just, we can get the community to be involved in all the tasks that we have that are just too overwhelming and too stressful to do.

 

Overcoming MS (31:42)

And as a black woman, presume that you’ve encountered gaps in the healthcare system for people of colour. So, assuming you have, and for those who might not know, can you highlight systemic barriers that exist in healthcare?

 

Minnie St. Claire (31:55)

So for me, I curated exactly what I wanted from a family doctor from the beginning, because an experience I had when I was younger with my cousin, she was very upset with her male doctor not listening to her, where my family recommended she look for a female doctor. And that advice stuck with me forever until I found my own doctor. She was a walk-in doctor first, but she was happening taking on patients full-time. I asked her, I asked her in the middle of me having a bladder infection hunched over on her table if she’s seeing patients full-time.

 

And I’m glad I did, because she’s my doctor now, 20 years later and I pretty much have to stay in the neighborhood she works in to keep her as my doctor. And she also has a private clinic that has like an annual membership. So I only hear about the medical disparities from other people in the disability groups of like, they have a doctor but they don’t want to go to the appointment or they have a doctor that gave them a prescription that they don’t want to take it. And it’s the trust that’s happening in healthcare where especially with Ontario HealthCare you’re just randomly assigned a doctor unless you actively go choose one and that takes work. That’s something the individual has to go do. Like if you need a doctor that looks like you, who lives in the same neighborhood, or speaks your language, you have to take the time to find them. And then with the Ontario Physician Directory website, where all the doctors have their licensing posted, and if they have any like, disciplinary actions on there, it’s a good idea to go Google everybody to see who’s available, who’s not available. Like the neurologist now, I’m switching from my first neurologist to a new one, and I’m now being switched to a female neurologist and then her on-call doctor while she’s on returning leave is also a female doctor and I asked my family doctor of what reputation does she know of my neurologists and from what we can find they’re really good they’re really excellent they win awards and they also like sushi.

 

So it’s worth the investment of finding your healthcare provider, whether it’s a public clinic or a private clinic or a virtual clinic, depending on where, who’s taking patients or how they’re taking patients. Because it’s your whole life. It’s not just with MS, it’s with menopause, it’s with having babies, it’s with children. It’s like the black community, a lot of us get tested to see if sickle cell. Like it’s just, it’s a constant thing of when do I go see my doctor? And for me, I see them every month and I do blood work every month and I did my mammogram yesterday. It’s never just, I have a doctor, but I’ll see them five years from now.

 

Same thing with a dentist. Me picking a dentist out I was comfortable with that I literally just pick the dental hygienist every single time where now we’re seeing if they have samples for the mouthwash for dry mouth because all my medications give me dry mouth. Yeah, I actively make sure the relationship I have with my healthcare team is people I like, people I can joke with. Like my dental hygienist thinks she has multiple sclerosis and now we’re having that conversation.

 

But that took like this friendship skill building with professional people where, yeah, I would fall apart if I couldn’t have these conversations with the doctors that see me.

 

Overcoming MS (34:56)

How do you and how could we advocate for more inclusive research and resources for people?

 

Minnie St. Claire (35:03)

We need to demand race-based data. Because Canada refuses to do it. They hide behind a script and claim that it’s privacy reasons. But if I don’t see me in the marketing material, in the podcasts, or the advertisements for testimonials that are not actors, I need to know that I could have MS and do well with it. Like when I see Jennifer Lewis talk about bipolar disorder and Montel Williams talk about multiple sclerosis. And now I’m learning Shamar Moore’s mom has MS. Like I need people that look like me talking about it, even if it’s not a celebrity. And not in black history month. We’re black every single day. We’re Asian every single day. Like how my dental hygienist thinks she has MS and she’s comfortable talking about it with me. And the main thing she didn’t want to talk about it because she sees this as a white person disease. And we had that conversation and I’m like, yes it is, but you need to find out what this is so you can treat it.

 

And then get insurance. Like if you’re working in an employer and you don’t have insurance from your employer, you have to pay for insurance from your private insurance. Because if you get diagnosed with multiple sclerosis, those drugs are so expensive. And you may or may not.

 

Overcoming MS (36:06)

And once you’ve got diagnosed

 

it’s too late to get the insurance because

 

Minnie St. Claire (36:10)

They don’t give you anything after the diagnosis. They give you everything before the diagnosis, but after the diagnosis, you’re on your own. Like my MavenClad, I asked them, is $3,500 a pill. I had to take 14 of them. And luckily, the insurance and the government paid for it, but I also know because I’m on Ontario Disability Super Program, it’s not them paying for it. It’s a different part of the government. And MavenClad said if I wasn’t approved, they have a compassion program to pay for it.

 

But anybody else that I meet that has a job that’s relatively able-bodied, I always ask them, you have insurance? And most people say no. It’s really scary if they don’t have insurance, because anything can happen to them where they need the insurance. And if they don’t have it, they’re filtering through the government program. The government program is not paying for everything.

 

Overcoming MS (36:57)

And so you seem like a very much digital first person, happy with digital space. So how do you leverage digital spaces for friendship, mentorship, professional growth? How do you reach out in that way?

 

Minnie St. Claire (37:08)

It’s everything. Like, because of me being on dial-up internet with AOL chat rooms  and even now, some of the MS groups, they have their digital meetups and CanDo MS has one for the black community that meets four times a year. And now I’m emailing a member in the group as if we’re writing very long letters, like we’re pen pals.

 

It’s very easy to meet somebody online and talk with them and it’s better to meet with them video chat so you know they’re real person instead of just getting the emails and back and forth. But I pretty much, it’s easier for me to make friends online than in person.

 

So I just take advantage of, I’m more comfortable of talking to online with people and meeting them on video chat or a Zoom call. I book everything in my calendar. like, if I’m meeting with a friend like tomorrow, 2 p.m. I meet with them on my calendar, they get a video link, we text back and forth that we can’t make it. And it’s just built into my social lifestyle. But it’s more like, MS Canada doesn’t have yet black support groups. I need them. I told them I need them, but they’re only doing it now because they got a lot of complaints. So with the other organizations, we need supports that diversify the multiculturalism we have worldwide. Because more people worldwide are getting diagnosed with MS and we need the supports, we need the cultural supports, we need the language supports, we need to be able to educate our family in the language that they speak so they understand it’s not just hypertension, diabetes, and heart disease autoimmune disease is something you can live with another disease, and we don’t know that unless we openly talk about it.

 

Numbness in your hands is not something you ignore and push harder and work at your physical job. You need to find out why they’re numb and if it’s numb because of lesions in your spine, that is not something that shows up right away. Like, have you realizing my hands are numb because I have lesions, like I have lesions in my C2 and C3 in my neck that affected both of my hands where I couldn’t lift anything at my grandma’s barbecue when they’re giving me the bottles to bring back into the house. I got to tell them to stop. And then when I walked down the small little steps from the house to the porch, my cousin noticed my balance was off. But nobody else did. And she was like, what’s wrong? And I’m like, it’s MS. She was like, oh, OK. But they’re subtle, some MS symptoms are very subtle. And if you don’t have a doctor to talk to and you don’t pay attention to what your body is doing, then you’re waiting for MS to be progressive disease disabling before you realize it’s really there. And that’s the part that could be prevented. We have so many things to prevent it from being that progressive.

 

Overcoming MS (39:24)

Yeah.

 

And so as a final question, how do you think that education, advocacy and confidence help you manage your chronic illness long term?

 

Minnie St. Claire (39:50)

It was the only way I could treat my bipolar disorder. So when I got diagnosed with multiple sclerosis, I treated it the same way as me being diagnosed with bipolar disorder. I looked at what magazines were available, what articles were available, what YouTube content was available. So I built my own community around it because my doctors would give me the medical stats of it, the pros and cons and side effects of different treatments, which is great. I need to know what they are. But for living with it, I needed to see

 

real people living with it. Like for me in bipolar disorder, it’s bipolar magazine and Gabe Howard and Natasha from psychology today. Like those are my people online that anytime I want to see something for bipolar disorder, I would listen to their content. And then our MS it’s Dr. Aaron Boster over the Boster Clinic.

 

He’s wonderful, it’s fantastic. I’m not worried. When I was going through my relapse and I want to go to Tizanidine and ask my question in the chat and he answered the question as alternative to baclofen I went to the emergency room and asked for it the next day. And it’s working. I can move my hands again.

 

So we need more of that happening in the community to get people to be advocating for themselves, knowing how to do the research. Because when I was in the emergency room and I asked for the Tizanidine, the doctor asked me, how do I know about it? And I told him all the sources that I went for the information. And then he consulted with neurology in the hallway. Two of them said yes, give her five milligram. And they sent me home. I made my appointment way faster than I needed it to be because I was educated.

So yes, it’s mandatory to be as educated as you can. So when you go to your doctors and have the conversations, you make the appointment shorter and less stressful. And yes, doctors may think, why are you so educated? But it’s your body. You’re supposed to be. It’s the only body you have. And you need to know of how to make it work for you so you can live longer.

 

Overcoming MS (41:42)

So as a final point I’d like to say definitely check out the show notes because there’ll be resources for to get in touch with Mini and thank you very much. It was absolutely fascinating. Thank you very much for joining us Mini St. Claire.

 

Minnie St. Claire (41:56)

I’m happy to be here.