Warrioring Lupus with Charis Sanford

Charis, a single mom of three with many titles reflects on life, work and motherhood with Lupus.

Transcript from a conversation recorded 5/7/20

Please excuse any typos. Link to listen to the recording of this transcript here

Charis: If you don’t accept it as like a death notice , but you use it as a wake up call to make changes in your life. I firmly believe that it’s definitely something you could live with and never experience a symptom in your life.

Taylor Camille: Today we’re speaking with Charis Sanford, a self-described lupus warrior. Charis, and I have known each other since middle school having grown up in a suburb just outside of Washington, DC called Silver Spring, Maryland, and we’ve kind of kept tabs on each other ever since.

If you’re listening in May, May is Lupus awareness month. Lupus is an inflammatory disease caused when the immune system attacks its own tissues. For unknown reasons, Lupus is three times more common in African American women than in Caucasian women, and there’s currently no cure. It’s also difficult to diagnose because the symptoms vary.

I spoke with Charis just before Mother’s Day and we talked about life work and motherhood with the disease.

Charis: I’m Charis from Mama’s Kitchen and Curls. As you can tell by the name, I’m a mom. I have three daughters, Mckenzie, who’s six and a half. Zoie will be three in June, and Rylie just turned one. I’m a freeform creative who by day works, property management’s managing community associations. And by the nights I am running curl consultations, a blog, creative consultations as well as an online shop curated to encourage moms to make time for themselves in not just physical capacity, but emotional and mental as well. And I’ve been living with lupus for the last eight years

I was diagnosed my sophomore year, the summer of my sophomore going into my junior year of college, a week before my 20th birthday. And, I actually got turned away from the hospital at first. So for me it wasn’t like I was feeling sick for a long time kind of thing.

And there was like a long process. It was, I remember the exact day I was on the light rail in Baltimore. I went to Towson and worked in the city and I was on the light rail and I just had this really sharp chest pain and it wouldn’t go away. It got so bad to the point where I literally could not breathe or move without feeling pain.

And so I ended up barricaded on my couch I eventually went to the hospital and they told me, ma’am, you just, they use like the fancy term for chest pain. And then she told me to leave and then rushed me to leave because I was holding up a triage room. So I’m what 19 at the time parents and family are in Montgomery County.

I’m in Baltimore in Towson. So I went home and I was just like, well guys, this is what they told me, but I’m pretty sure there was something wrong. I went that whole entire week on my couch in pain, I remember it was Friday and I just couldn’t take it anymore. And I called a police officer from the campus to come pick me up.

[And said, I need you to take me to the hospital. There’s something wrong. I’ve already gone and they’re telling me there’s nothing wrong, but I, can’t move. he couldn’t take me. But he met me there. They had no idea what was wrong with me I was undiagnosed for the first 10 days and they would not let me eat or drink

Taylor Camille: In the hospital.

Charis: Yes. The most I could do was chew gum it was horrendous.

They were taking my blood several times a day. It literally felt it was hell, like, and frustrating, like to be so young and being a black woman in America, you know, you’re, I’ve already been turned away from this hospital once, so I had no idea what was going on. I don’t know how to really advocate for myself.

My parents and family weren’t really around and they ended up putting me on all kinds of machines. they scoped me stuck a camera down my throat to check my insides. it wasn’t until like day 11 they were like, you have lupus. they kind of chalked it up to that. And I had pericarditis, which is fluid around the heart.

And so I’m not sure if it was the amount of stress that I was under or what it was that triggered all of this out of nowhere, but it was like, you have lupus, you have pericarditis as well. This is your diagnosis. Follow up and here you go. and that was that And then I was off to figure out what the heck lupus was and like what that meant for me.

Taylor Camille: Yeah, I was going to stay. Did you know what it was before that? Like did anybody, does anybody in your family have it.

Charis: So no one in my family has lupus. Lupus is an autoimmune disease. Through my diagnosis, my mom and my grandmother, my mother’s mother have also found out that they have auto immune system diseases as well. But when I first got diagnosed, the only thing that I knew about lupus was, a girl from childhood, her mom used to watch me when I was in elementary school and they didn’t speak much English at first. That’s actually how I learned Spanish and her mom, I literally watched her mom die from lupus, like she used to always come outside and it went from like her being outside, like watching her kids play to being in a wheelchair to not being able to move. And I just remember like her literally disappearing. So when they first told me, I remember like the first, I don’t even know how many days, but I just remember, being, in my apartment crying. Like, this is July, my birthday’s in July. I had just gotten out of being homeless in April.

My roommate had just left me and I was just like, Oh my God. Like, am I going to die? And especially so young because majority of people who do find out the diagnosis, they find out much later. It’s not something you get diagnosed with at 19 so it was very, very daunting and it was just like, well, am I going to be able to have kids?

Most people with lupus can’t have kids. We all clearly see I’m capable, but it’s, it’s, it’s scary. And the amount of information is so limited.

Taylor Camille: Right, because you can experience one or a few of the things. You won’t experience all the symptoms at the same time and it’s kind of like. One of those invisible illnesses where it’s hard to detect.

So I mean, clearly you spent 10 days in the hospital and they didn’t know what was up.

Charis: And that’s so baffling that there’s got to be a better way to determine whether or not somebody has any sort of dormant disease. And that’s what’s so frustrating about all , the research is just, even if we don’t find a cure diagnosing people earlier, I am a huge, huge believer that that honestly determines your outcome.

Lupus is a chronic illness that doesn’t have to kill you, but there is no cure and it can kill you. And, there is currently, only one medication on the market that is available to help maintain your symptoms. And lo and behold, I’m actually deadly allergic to that one medication. And actually had no idea I was prescribed it, thankfully, didn’t take it.

I will never forget. So my dad is a ironically a cardiovascular surgeon, and when I was sent home, they gave me at least five or six different pain medications.

It is so scary how quickly they were to push them on me. it’s like they wanted me to be a part of this opioid epidemic, I easily see how it’s become one. I had mind you at 19 barely like what 130 pounds tops. I had Dilaudid, Percocet, Oxycontin.

But they gave me like all of this medication and they basically said to manage your symptoms because we can’t really manage them. Take a Percocet at this time, and then an hour later take a Oxy and then two hours later you can take a Tylenol three or Dilaudid. And I mean, it was crazy. I think I did it a day or two and it was to the point where I couldn’t, I couldn’t even drink water because it was tearing up my stomach lining.

Like I was out of it. I was passing out in my apartment and I lived alone at the time. It was just so dangerous and when that happened , I told my dad , I’m going to just have to figure out how to live with this without this medication, because if not, I might as well just die now.

Taylor Camille: Yeah. That’s so scary.

Charis: In the eight years I’ve had it, I feel like the hardest part of managing it was at the beginning when I had no idea and there was little information and I was just doing what the doctors were telling me and I think that adds a lot more stress, which is one of the triggers of lupus. If you don’t accept it as like a death notice , but you use it as a wake up call to make changes in your life. I firmly believe that it’s definitely something you could live with and never experience a symptom in your life.

Taylor Camille: Hmm. So were you seeing doctors regularly before your panic moment in the hospital?

Charis: No. Like I said, I was 19, so before that, I mean, I had my college physical, I had, you know, when your parents tell you to go to the doctor in high school, and that was really it. I didn’t have an extensive medical history prior. It was just like, boom. All of a sudden now I’m sickly and I’m seeing a rheumatologist and a cardiologist. On a regular basis. It was a huge shift.

Taylor Camille: Yeah. And you were pretty active, like in middle school and high school, weren’t you?

Charis: I would say I was more active than the average person, being active is something that, will, honestly helps so much. I haven’t been consistently active because of pregnancies, et cetera. And I’ve noticed how my joints respond to physical activity now, and it’s very scary, because I mean, we’re not even 30.

I’m not heavy, so there’s no reason why doing simple exercises, lunges and stuff like, like my knees literally pop and ache and hurt my hands like, if I tried to put braids in my hair or depending on the style of Mckenzie’s hair, like my hands, it feels like I have arthritis. It got to the point where brushing my hair or holding a toothbrush like my hands would lock and it would like, I’d have to unpeel my fingers off the toothbrush. I’ve had to get cortisone shots in my wrist.

Because how bad my hands hurt and they lock up at 20 something years old. It’s baffling.

Taylor Camille: My goodness. Yeah, I remember it’s, it’s crazy. Like you said, we’re not even 30 yet, and to have this present itself, I mean, when I think of people with lupus, I think of like. My grandmother had lupus, or like you said, like your friend’s mother had lupus and you think of as older, you know, kind of wear and tear on your body, but being young and dealing with it is a totally different ball game.

Charis: It’s hard because from the outside looking in, people don’t, you don’t realize it. And then people look at you like you’re complaining when you’re 20 something and you’re like, my back hurts. I can’t do this, or I don’t want to participate in this because I can’t.

Taylor Camille: Yeah. They’re like, what are you talking about? How do you feel when you have to like tell other people you have lupus, like how does that come up in conversation and how do people react when you do share that part of yourself?

Charis: So I only bring it up if someone else is talking about their health. Because unfortunately society deems you as you know, complaining or you’re looking for a handout if you talk about things that are wrong with you. And I don’t want anyone to feel bad, like I don’t want the sympathy card if I say that I have lupus.

If so, I try not to disclose it unless it’s in a space that’s welcoming of the conversation itself. In the dating aspects. I’m kind of upfront cause it’s something that you’re going to have to understand that I require more sleep than most people and I get half the sleep of the average person.

So It comes with consequences. My stress levels have to stay low. And so if you’re gonna bring stress into my life, then that’s something that doesn’t work. And I’ve had to disclose it to jobs. And again, like I try not to, like, I have lupus, so make sure I have a good sick leave, good benefits package, but it’s just, you know.

Being a senior in my industry, it’s, it’s helped. And being an entrepreneur, I’m kind of in control, but it’s just like, ‘Hey, I’m just letting you know upfront. This may come up because I do have lupus’ or, I typically, I try to frame it like in a routine way. Like, ‘this is my routine because I have this so that it’s more respected.

Taylor Camille: I feel like it’s probably similar when you have to disclose you have children.

Charis: Yeah. Yeah. It’s similar. However, actually, you know what, I will say they are the same because it’s considered baggage. they second guess whether or not they made the right decision. Sometimes, you know, especially being a young black girl, can she handle it? Is this going to become a problem, especially in property management and being the aggressive manager that I am?

You know, is she going to be able to climb up on that roof? is this going to be a problem where she’s going to need somebody else to help her? And if so, does it make sense to just replace her? Luckily, knock on wood, you know, it hasn’t caused any problems, but it all boils down. I think it’s about how you say it more so than what you say.

I think if you approach a job, relationship, whatever, and you introduce whatever your illness is, in a way that puts you in control. You control the narrative versus letting someone else ask or, you know, it’s like I have lupus and you kind of leave it open. If it’s like, ‘Hey, I have this, this is what I need, XYZ’.

It’s a lot easier for people to respect and understand and they kind of back off. They may have questions, but they back off when you kind of go into it timid, it’s like you’re a doormat.

Taylor Camille: Yeah, you’re giving them the control. So aside from pills, did you find anything else that gives you any relief or remedy

Charis: I’m a pro cannabis. user, so I remember I was working like a little office job and there was a shuttle and the shuttle driver, I don’t know how we got into the conversation, but he was telling me to look into holistic and homeopathic ways to help me manage my lupus.

And at first I was like, he’s talking crazy. This man doesn’t know me, whatever. And I started looking into it and I didn’t consider the medicinal benefits until it was just like, well, let me start researching.

I learned about like, thyme tea, which is literally just brewing fresh thyme leaves in water and it’s an anti-inflammatory and it’s really, really, really good for people with autoimmune diseases just like little, little nuances. I was never a big meat eater, but I eat meat maybe once or twice a month. Primarily pescatarian. I don’t do much dairy other than cheese. I don’t drink soy milk anymore. I only drink almond or coconut milk. It really prompted like a whole lifestyle change and it wasn’t something that happened overnight, obviously, you know. But I noticed like as I started making small changes, I started to feel way better. I will use a steroid pack if my symptoms become unmanageable, and that’s happened, I want to say a few times. But that, in my opinion, is way better than to constantly, consistently take a pill or a drug. To manage your life. When you can manage your life the best you can, make positive lifestyle choices and then you can use something else as a supplement for when you have these acute issues that are just too hard to manage.

Taylor Camille: Yeah. It’s so crazy that we’re so accustomed to, you know. Go to what the doctor says, but then you meet this shuttle driver and he’s like, have you ever tried? And then it opens up a whole new world for you. To not have to feel beholden to what they’re prescribing you. And are your doctors that you see now regularly, are they supportive of those treatments that you found

Charis: So I haven’t been to the doctor. Okay. So I actually stopped, the last time I saw a rheumatologist, I was pregnant with Zoie, Zoie is, will be three on Juneteenth. So it’s probably been exactly three years or probably to the day, that I’ve seen a rheumatologist. So for me, I guess, because I know that there isn’t a medication out here that I, that exist, that cures it, the medication that does exist, I can’t take the steroid packs I can get from an urgent care or ,y general doctor, if you know, I just say, I’m experiencing this. They know I have lupus. So in my opinion, I just didn’t feel the need to continue to go back to get tested, because if it’s gone, it’s gone. If I still have it and I managing living just fine, then why?

And then on top of that, I’m, because I’ve had two pregnancies that were somewhat back to back, I’ve been to the doctor for that. Even, now that I’m done with kids, I don’t really feel as though it’s something that I would like to continue, I just, it’s so frustrating to constantly be the Guinea pig.

It’s annoying to have your blood taken all the time and having to go back to the doctor’s appointments to follow up. It’s just, it can be a lot. And that in and of itself for me is stressful and is a trigger. So in my mind, even if there’s nothing wrong, making that appointment and following up is going to end up triggering something so I don’t do it. It’s bad. I

Taylor Camille: It’s like more stress than it’s worth.

Charis: No, I need, I need to go. It’s hard being a mom with an illness because your first instinct is obviously your kids, but then it’s mask on before you help others with theirs. But then it’s just like, but if I do this, how does this benefit the kids? It’s, it’s hard. It’s hard because your kids don’t understand, and it’s a very tough space. I worry about being, especially, you know, how many black women are misdiagnosed. I don’t want to be part of the statistics. I just don’t want to contribute. I want to live my life as clean and healthy as possible and know that I’m doing everything that I’m supposed to, to take care of my body. And as long as I’m doing that, I feel like I’ll be okay.

Taylor Camille: It’s kind of, it’s upsetting that there is such a mistrust of the medical community because of the history they’ve had with black women. And it’s amazing that you’ve had three daughters and I think you’ve had them all in the hospital births. Right. Like they were, no at home birth or anything.

Yeah.

Charis: Actually, as much as it’s advocated for us to have an at home birth, that scared me more. I didn’t want to be without medical assistance, I understand. They don’t listen to you. But if something bad were to happen with me and my child, the best place for us to be is to already be there. The fastest way for us to get help. We’re already there. I need to know that, like the whole floor can get shut down if we need to know.

Taylor Camille: But also with your lupus, pregnancies are already high risk, right?

Charis: Yeah. Mackenzie, I, I had her so fast. I honestly didn’t even understand how lupus was going to affect my pregnant. I mean, pregnancy was new obviously. So after having three, I realize how horrible my prep, my first pregnancy was with Mackenzie and how much. I was symptomatic and didn’t even realize it because I thought I was complaining or I was being dramatic and this is, or this is what pregnancy is supposed to be.

And I had no idea. You’re not supposed to pass out in public places. You’re not supposed to not eat for the first three or four months of your pregnancy.

Taylor Camille: Hmm.

Charis: You know, all these kinds of things that. I think one of the biggest parts that was hard for me to cope for at 19 years old. Loving kids and you know, to be told that this disease, you’re very unlikely to have children. And if you do, then they may not see term I didn’t expect to have children the way that I did, but they happened. I was able to have children

Taylor Camille: How do you describe your condition to your daughters? Have you had to yet?

Charis: Mackenzie knows. So I don’t know if she knows the full name. Like, I don’t know if she knows mommy has lupus. She might. But she does know that sometimes mommy doesn’t feel good. And it’s generally, so for me, when I flare, the biggest struggle is it’s usually my back and.

Having two car accidents. It doesn’t help. It’s just excruciating back pain. I don’t have chest pain as much anymore, , and so she knows like Mackenzie as a baby, used to rub my back, but I was crying because my back would hurt and she would just lay there with me.

I don’t. They know, but I don’t think they fully grasp, like there’s something inside of mommy that makes it harder for me to do certain things. Or, with COVID I’ve had to explain why it’s so important for us to follow the guidelines, but. I had to stress that, you know, although it’s, it’s something that if we do get, it may not kill us. It may kill mommy. And I had to like delicately explain that without like freaking them out. Mommy’s, mommy’s body can’t fight. So I explained it like there’s fighters in mommy’s body, that are little.

Organisms that fight and mine aren’t that strong. when germs come in, sometimes the germs are stronger than mommies fighters. And when that happens, mommy gets really sick and she feels XYZ. So that’s kind of what it’s been. It’s just like, guys, we have to be careful with germs. Mommy’s body can’t fight germs like you guys.

And that’s all you really can do. I don’t, I try not to scare them too much, but I think it’s important for them to be aware.

Taylor Camille: Yeah, definitely.

And as Mackenzie gets older, I feel like she’ll be able to better help. But with the little little ones, it’s like, what are you supposed to do? They just want like touch everything and you know, be crazy.

How would you describe motherhood if you had to?

Charis: Ghetto. Like, if we’re being honest, it is. It’s like the hood. You don’t drive by past six o’clock. You don’t really drive through that neighborhood unless you like absolutely. Have to. Just kidding.

Taylor Camille: You’re going to jail, do not pass, go, do not collect two hundred dollars

Charis: I will, I will go to jail for how long? There’s no visitation, right? They can’t come. I will my Motherhood is a reflective experience. Like you’re able to look at your mom and other women and matriarchs in your life in a completely different light and with a lot more grace because it’s like. Okay. I understand. You know, that may not have been the way I would have done it, but I understand. I mean, you really get to see, and do so much through their eyes.

Taylor Camille: Yeah. I love watching you be a mother, just even from social how do you hope people feel when they are interacting with your blog and social media

Charis: Again, the reflexive experience, it was like I want to de-stigmatize what motherhood is supposed to be because maybe if everyone stops living in shame, then we can come together and moms will feel more supported, you don’t think anyone else can relate because everyone seems to have it together.

(noise interrupts) whoa, hold on. I’m sorry. Are you okay? It sounded like somebody fell out of a bed or something.

Taylor Camille: Do you want to go check?

Charis: Nope, there’s no crying, no screaming, and I asked no response. So

Taylor Camille: I’m learning so much.

Charis: When people come to my blog, I hope that they feel inspired and empowered to step into whatever their passions are, but my biggest thing is making sure you’re coming back to self. It’s cool to have all these things that you like and you do, and they’re all parts of you, but making sure that you are really tapping into the whole you and being honest with the whole you

Taylor Camille: Yeah. That’s real. Cause I feel like oftentimes we feel like we have to like segment parts of ourselves and it’s just like, just show up. Just be who you are fully. And that’s okay. The other thing I close out my shows and ask people is what brings you peace? And like, how have you found peace, or what quote leads your life?

Charis: Just incorporate, if you can make the time to be still with yourself. Okay. Five to 10 minutes a day to just kind of like allow yourself to feel your feelings, think your thoughts, and then let them go. And anything that serves you, no purpose. Literally just let it go. All of it’s based off of, Don Miguel Ruiz’s ‘Four Agreements’ that I read years ago.

[But if you essentially adapt that and use those 10 minutes to make sure that you are incorporating those four things. am I being impeccable with my word?

Am I taking things personally? am I always doing my best? it gets to a point where you’re at peace at all times, no matter what chaos is around you.

Beyond Our Cells is an original series produced and hosted by me Taylor Camille, a variety of the series artwork shared here and on our Instagram @beyondourcells are created by Carmen Johns and Sierra Hood. My hope is that these listening’s have left you with a warm heart and an even cooler mind. I hope you are left feeling able to seek peace in the spaces and places you may find yourself in.

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writer, producer amplifying voices of woc w/ the use of media that connects art, culture & history•sharing health histories @beyondourcells • linktr.ee/tayllure