Brianna Cardenas, PA-C, ATC, on challenges as a queer woman of color with EDS

 

 

 

 

CW: Discussion of suicidal thoughts and depression. [None of the information provided in this Q&A is to be taken as medical advice; please consult a doctor if you have questions about your medical condition.]

 

For our June newsletter, the Chronic Pain Partners media team interviewed a diverse group of people to highlight the diversity of our community and emphasize the challenges that arise when one belongs to more than one minority. In this interview, medical writer Sarah Cook speaks with fellow physician assistant Brianna Cardenas about the challenges she faces as a queer woman of color who navigates the American healthcare system with Ehlers-Danlos syndrome, what she wishes the community better understood, and her top tips to improve quality of life as LGBTQ+ and a POC with a rare connective tissue disorder.

 

Sarah Cook:

I think it would be fair to say that the representation of EDS patients within the medical field isn’t always the best and that this is also the case for persons of color and the LGBTQ community. I am thrilled to speak with you today since you represent all of those communities. Can you start by telling me how your identity as a queer person of color has affected your EDS journey?

 

Brianna Cardenas:

Sure. I’ll preface this entire conversation by recognizing my privilege as somebody with access to medical education and dual health degrees because there’s no way that I would be alive today if I didn’t have the capacity to speak medical lingo and be able to advocate for myself in a way that sounded educated. Unfortunately, that’s been a “golden ticket” to help me overcome some of the barriers that so many other people with EDS still have to face because they can’t call a neurosurgeon or text a friend who’s a physician. That has been instrumental in my care. I’m very aware of that and want to acknowledge that I have those privileges. 

 

To your question, I think that those things influenced the time that it took for me to get diagnosed. I would say that the most pointed example of a delay in my care due to outright racism is when my spinal fluid leak got really bad but was not yet diagnosed. My whole body would twitch and have dystonic jerks. It was scary. My POTS was severe, so I would get super tachycardic. One night my heart rate went up to 150, and I couldn’t get it down for over an hour. I was getting short of breath and dizzy, with an “impending doom” feeling.

 

My husband and I called for an ambulance. I was understandably anxious and trying to give my medical history to the EMTs. They told me, “This isn’t your show. We’re here now. We’re the ones working, not you. Let us do our job.” 

 

At the ER, they separated me from my husband, who also is my patient advocate, by lying to him about the registration process. He wasn’t able to rejoin me until after I got into a room.

 

Then they told the nurse taking report from them that there was nothing wrong with me and that it was “just another ‘Hispanic panic.’” That’s a super common derogatory term for people who are experiencing anxiety or that can look like anxiety, including heart attack, stroke, and diabetic crisis. When I learned that term in PA school, I thought, “In Southern California, there’s no way that’s a thing. We’re not like other parts of the country where that’s so rampant.” But this was right in Southern California. They knew I was a healthcare provider, but it rolled off the tongue like it was not even a question. 

 

The nurse had a very condescending attitude. They didn’t do an EKG this entire time, even though I said I thought I needed one. Keep in mind the main concern was my heart rate was >150. Before they provided any medical care–before the doctor would come to see me–they made me do a tox screen because they thought my heart rate was high because I must have been abusing drugs or using illicit substances. The standard of medical care for any person with shortness of breath and an extensive medical history is getting an EKG right away. Instead, I was promptly dismissed. I wasn’t allowed to access care until they proved to themselves that I wasn’t–and I want to use person-first language here–a person with addiction. There is absolutely no excuse for that. 

 

I also remember as I was getting sick, I suddenly gained 40 pounds. That was one of the first symptoms of my CSF leak because my pituitary stopped working. I remember explaining to my boss at the time that I didn’t feel good and was nauseous all the time. He said, “Are you sure you’re not pregnant? Because when pretty Latinas gain weight, it’s always because they’re pregnant.” Those are two glaring examples for being Latina. 

 

I’m also a queer person. My husband and I have been together for 15 years. He’s my primary partner. I also have a girlfriend, in a polyamorous relationship. We’re all new to this dynamic of polyamory. I remember an internist on my care team, who I’ve known for a long time and trusted enough to send my family to, looked at my recent blood work and said, “Six months ago, you got an STD panel. Is everything okay in your marriage?” I told him, “Yes, I just have an additional partner.” You could see that it glitched something in his brain. We have a very collaborative relationship, so I thought, “Good thing I have a rapport with this person and felt comfortable sharing this because that’s not something that you can necessarily tell every healthcare provider that you come across.”

 

Cis heteronormative standards are not what govern every relationship. That’s one of the layers of being authentic to oneself, including invisible identities that all people carry. Those identities we have to be really cognizant of because they can influence the type of healthcare we receive.

 

Sarah Cook:

Thank you very much. Those are great examples. When were you diagnosed in relation to coming out as queer or polyamorous?

 

Brianna Cardenas:

Being poly is brand new. My girlfriend and I have been dating for six months. We’re not a triad. My husband is just meeting her. It’s brand new for me to have my girlfriend and try something different.

 

Sarah Cook:

Congrats!

 

Brianna Cardenas:

Thank you so much. I came out as bisexual when I was about 19. That’s how I identified then because I hadn’t had exposure to trans and nonbinary people. As of a couple of years ago, I identify as queer because anything binary is not ideal and doesn’t capture my full experience. 

 

I started being so symptomatic that I couldn’t function when I was 18. I got diagnosed with EDS when I was 20. It was a physical therapy preceptor on one of my athletic training rotations who diagnosed me. I got diagnosed with my CSF leak when I was 28, well after the process of getting diagnosed with EDS.

 

One other identity that I think is important to share, too, is that of somebody who’s overweight. That absolutely has influenced the care that I’ve received. I was not overweight when I first got sick. I was a healthy and what people would consider an “average” weight. My BMI always has been in the upper 20s, but BMI is trash. It’s based on the white male body, so I don’t think that BMI is a great representation of health. My weight was never something that stood in the way of my EDS diagnosis. 

 

I gained 40 pounds. I’m only 5’3″, so, on my frame, it changes things. That was a barrier when I went to an endocrinologist. I said to her, “Help! I don’t have my period anymore. It’s been a year. I’ve gained 40 pounds, and I’ve done every single diet I know how to do. I need some help restoring my menstruation, but if we could figure out why I gained 40 pounds, that’d be great.” She interrogated me on my eating habits, demanding that I show her three months of food on my calorie tracker to prove that I wasn’t lying to her and secretly eating cookies every morning or something.

 

Sarah Cook:

Wow! I don’t know why some endocrinologists do that. As a person with an endocrine disorder myself, I’m familiar with that experience. I’m sorry that you are, too. Please continue.

 

Brianna Cardenas:

I’m sorry that you can relate and empathize. It’s so bizarre to me. As an endocrinologist, wouldn’t you be the first person to know that the endocrine system largely governs metabolism and weight? I told her, “I wouldn’t come in here wasting your time if I knew that I had behavioral modifications that I could continue to make.” 

 

I think all those identities played a role in my delay in diagnosis. 

 

Sarah Cook:

I see, thank you. What has been the most challenging part of being a person of color and being queer with EDS?

 

Brianna Cardenas:

As somebody who works in the healthcare system, I’ve seen my colleagues talk trash about lower-income patients, about patients who they say are difficult patients, or based on patients’ insurance status or mental health conditions. Newsflash to every healthcare provider out there: Somebody could have bipolar disorder and also have a broken ankle. Somebody could have anxiety and also EDS.

 

Also, trauma is a real thing. Trauma is unavoidable and inescapable. We are largely governed by our emotions and our automatic thoughts and behaviors. Whether or not we deal with the trauma we experience in our lifetimes is later up to us.  

 

There are so many pieces to this, but the part that comes to mind is never fully feeling like I can receive care. I have never–since I was 16–gone into a healthcare provider’s office not having already prepared. Before I got my medical degree, I was looking up how to pronounce certain words so that they didn’t say, “This girl has no idea what she’s talking about.” 

 

Medical trauma is a whole other factor that comes into play. I don’t think a lot of healthcare providers are aware of it because they think, “My dad was also a cishet white male physician. I’m a white male physician. None of us have ever directly called someone the N-word; therefore, we’re not racist.” It’s such a narrow understanding of how their own trauma and biases play into how they engage with patients. 

 

For example, I went to the ER one time before my CSF leak was diagnosed. I had my POTS diagnosis already, but we just weren’t sure what was causing it to be out of control. I probably just needed IV electrolytes, but I did not have access to home health, nor was I capable of navigating health insurance to get to that point. An ER physician admitted me to the hospital right before shift change.

 

The physician who came in to see me right afterward said, “You look fine. I don’t think there’s anything wrong with you.” He tried to override the other doctor’s order and said, “You don’t need to be here. You’re taking a bed from someone who actually needs it.” I told him, “I have Ehlers-Danlos syndrome. I’m dealing with either Chiari or instability. My dysautonomia is really severe.” Then, without my consent, he grabbed the skin on my hand, pulled it, and said, “You don’t have EDS. Your skin is not stretchy enough.” I responded, “Actually, I think you’re thinking of the classical type of EDS because that’s one of the ones where stretchy skin is predominant. But if you need me to do circus tricks for you and prove that I’m not lying, I’m happy to show you the actual way to diagnose it. You might actually learn something so that you don’t gaslight a patient who needs your help and isn’t capable of advocating for themselves.” At that moment, I had to muster every ounce of my strength to be the business-professional version of myself for somebody who gaslighted not only my lived experience but the judgment of an attending physician. And this was a resident!  

 

As I step out from this experience, with the privilege of having been in therapy for five years now and having access to plant medicines that have allowed me to get a larger perspective and space from my trauma, I look back and think, “How traumatized is that resident physician?” That’s grueling training. I remember in PA school, I was on the brink. I can’t imagine being a resident and having to go through that for four years after medical school.

 

I realized there’s trauma all around us. It covers every situation. I think we need to be aware of how much trauma we’re dealing with. I know that I’m most likely always going to have to be mindful of the feelings, misconceptions, and prejudgments or prejudices of others and not ever going to be able to show up and just receive care. That’s something that is really hard as somebody with marginalized identities.

 

I also have the grief of thinking of people like my grandma, who went through the same exact stuff as I did–the gaslighting, the denial of her CSF leak, and a significant medical history. She had a high school education, so there’s no way she could have advocated for herself. And I think of all the people that are still, right now, experiencing that same thing with no capacity to advocate for themselves. That awareness is something hard and heavy to sit with. That’s why I started my business, because I thought, “There’s no way that I can not do anything to help people that are experiencing this.” That’s part of it.

 

The other part is that I’m aware of my own trauma–the grief it causes with the parts of my identity that are invisible so it feels like I’m in the closet again. When I step into a healthcare provider’s office, I feel like I’m in the closet. It used to also feel this way at work. Fortunately, I work at a place now where I can be fully honest about my medical history and all that stuff. But before, I wouldn’t tell people that I was sick because there was judgment similar to when I would tell people I was queer or hesitating to tell my physician that I’m in a polyamorous relationship for fear of judgment. It’s that feeling of having to hide who I am in certain settings for fear of the professional repercussions or the repercussions to my health.

 

Sarah Cook:

That must be hard. You seem to have figured out some good ways to cope.

 

Brianna Cardenas:

It didn’t come easy. I’ve had some ugly cries. What helped me integrate therapy––that is, incorporate previously disconnected identities into one larger one–and changed my life completely was the first time I had a ketamine infusion.

 

I was in the hospital at Cedars-Sinai, where I finally got diagnosed with my CSF leak. My spinal cord issue seemed to be what was kicking off intense pain everywhere. Because I chose pain management as my clinical specialty, I got along swimmingly with the pain team. We talked about the fact that I couldn’t use opioids because they make mast cell activation worse and actively worsen EDS. For some people, that’s the only thing that they have access to. Obviously, I want anyone reading this to please have the quality of life that you can scrape together with whatever help you can! But with EDS, opioids degranulate mast cells, which is one of the symptom-drivers of the disease. I asked my colleague whether they offered ketamine infusions because I’d heard that they can help with pain centralization.

 

And at that point, I was, trigger warning, suicidally depressed. I’d just lost my career, or thought I was going to be getting close to losing it. I was so tired and couldn’t word-find anymore. By the end of the day, I was forgetting my phone number. I remember being at the point where I thought, “I don’t want to actively kill myself. But if I don’t wake up tomorrow, I will be grateful for the rest.” I was in such a dark place.

 

With the ketamine infusion, it was the first time I was conscious and not in pain since I was 8. It gave me enough space from what was happening to just exist and catch a breath. It felt like I got a second wind and like it allowed me to suddenly and profoundly change the story I had been telling myself about my deservedness to integrate therapy. For a long time, I struggled with negative self-talk. Those narratives had a chance to soften their rigidity.

 

When I took ketamine, for the first time, I went from being totally unaware of my automatic thoughts and behaviors to being able to observe it all. It gave me a roadmap to make substantial, meaningful change. Even my outlook on whether or not I wanted to keep trying. It was profound.

 

I’m writing my doctoral paper on: “The Clinical Applications of Ketamine.” That’s what got me really interested in psychedelic research. I would not be as well-adjusted without having had access to ketamine. Other plant medicines, like cannabis and psilocybin, have also been profoundly healing for me. I’m a huge advocate for all of those therapies. I think it would be really great for a lot of people to have access, in a safe and controlled setting, to those substances.

 

Sarah Cook:

Thank you for sharing those experiences. I’m glad those therapies helped you so much. What else do you wish more healthcare providers knew about their LGBTQ or BIPOC EDS patients?

 

Brianna Cardenas:

I wish that healthcare providers had a better understanding of intersectionality and the real emotional and physiologic impact of microaggressions. It’s hard to describe the weight of the changes that people of color, in particular, have to make in order to survive in the world because we can’t hide that we’re people of color. That’s the identity on which I feel most judged and experience the most prejudice around. It’s hard. I wish that they understood that it affects us cardiovascularly and from a mental and behavioral health standpoint, regardless of income or education.

 

An example is what my husband and I do whenever we see a new healthcare provider or on the very rare occasion now when we have to go to the ER. In 2018, I was admitted to Cedars-Sinai through the ER for about 50 days, in six different stays, plus for my back surgery. I wore my scrubs and my jacket with my name and credentials on it every time. I made sure that my hair was done because I know that I’m automatically, as a person of color, going to be associated with somebody who is lower socioeconomic status, on state insurance, and health-illiterate. The care changes. The couple of times before then that I’ve gone with frizzy hair and sweatpants, I was treated like I was subhuman. My husband, who accompanies me as my advocate and caretaker, will dress business casual. That way, hopefully, they’ll see us as worthy of giving care to.

 

I have the daily experience of being a person of color and getting “the look,” the raised eyebrow in certain rural areas, and truly not feeling safe to exist in spaces. It’s the reality that people with white skin don’t have to experience. It’s devastating.

 

I wish that they knew just how much more life feels like we’re playing on “hard mode” when we experience those microaggressions on a daily basis. When they’re perpetuated, they affect the level of care we receive. I have no trust in the healthcare system anymore. That’s me, as somebody who’s trained as an allopathic practitioner.

 

I wish they had a little bit more understanding of structural things that got us here and the daily climate that we have to exist in. I’m not asking for special treatment. I’m literally asking for the treatment that they would give to a white person.

 

I wish that they knew that they have their own internal biases. I have my own internalized racism that I grew up with because growing up in the US makes this unavoidable – it is part of American culture. We all need to work on those internalized issues. I wish they didn’t have so much blindness to their blinders because it costs us our lives. That’s the hardest part.

 

Being LGBTQ plus is hard. It hurts a little bit to have presumed heteronormativity,  I’m married to a man. I tend to be largely invisible from that intersectional identity unless I choose to disclose it, which I get is a privilege in and of itself. I can’t imagine how hard it must be to have a same-sex primary partner or trans partner that isn’t “passing.” That must be a whole other layer of difficulty to navigate in a healthcare setting that I can’t really speak to other than just the hard part of feeling like I have to hide part of who I am to make sure that it doesn’t compromise my care.

 

Sarah Cook:

Are ways in which being a person of color or LGBTQ has better prepared you to deal with your EDS?

 

Brianna Cardenas:

Yes. I have so much more resilience and grit as I’ve grown up.

 

The first conversation I had with my dad about racism was when I was eight, and it was around softball. I was great at softball, and it was the one sport that I was really connected to. I didn’t make All-Stars one year and was devastated. My dad told me, “You didn’t make the team because of your skin.” I said, “What do you mean? I was the best. You can look at my stats to prove that this was a mistake.” He responded, “It wasn’t a mistake, mija. You’re going to have times in your life where people don’t want you there because of your skin color, and you are going to have to be twice as good, twice as perfect, twice as punctual, and try twice as hard to get almost the same treatment. This is just how it is for us and it’s not okay.”

 

I think dealing with that has made me extraordinarily well-equipped to hear “no,” to hear “not good enough,” to have doors close in my face, to deal with rejection, and to deal with straight-up apathy from people who don’t care if I get better–who don’t care if I live or die. I understand that that’s how it’s been since this country was founded. This country is founded on the bones of my ancestors. To be able to sit with that and still get up and work every day–to try hard every day, pretend that the system isn’t rigged, and still pretend we have a fair chance anyway has given me a lot of grit.

 

Sarah Cook:

Ok, how about the other way around? Do you feel that there are any ways in which having EDS has better prepared you to navigate life as a person of color or queer person?

 

Brianna Cardenas:

I think most EDS people I’ve met are extremely intelligent. I think either that’s a neurodiversity thing or possibly because our brains and the collagen surrounding them are different. I don’t want to say that one causes the other, but I know that my brain works differently than other people’s. I think having EDS and neurodiversity has allowed me to have a better understanding of both macro- and microcosms of existence.

 

I think it’s given me the capacity to understand the framework of systemic oppression, for example. It feels more empowering to be able to grasp what’s happening because then I can talk about it and share it with my students. It makes me feel like someday I’ll move the needle a little bit with all the students that I teach. I think that EDS is a large part of why I’m intelligent, and what has opened all the doors in my life is my intellect. I’m very grateful for it.

 

Sarah Cook:

Are there any other tips for persons of color or LGBTQ people with EDS?

 

Brianna Cardenas:

Keep fighting for yourself. In a Latinx family, everybody’s going to tell you, “You’re crazy,” or, “Mija, it’s nothing, stop. You worry too much.” No. If you know something is wrong with you, you need to seek help and find it.

 

You’re not alone. When you find your chosen family, it gets better. As an LGBTQ+ person, it can be extremely hard to find your family, especially when a lot of the crutches that people lean on to deal with their EDS or other chronic illnesses have to do with religion. There is so much trauma behind that as an LGBTQ+ person. Church is straight-up traumatizing for me.

 

Have the same understanding with people that we wish that they had with us. Try not to let the pain that we righteously and deservedly feel project onto others so that we further alienate from one another. I’m sure every person of color will resonate with this as they read it, but people are already looking for a reason to not like us. So let’s not give them one.

 

Sarah Cook:

Wonderful. Thank you for that. You have such rich insight. I really appreciate you sharing with us.

 

Brianna Cardenas:

Thank you.

 

About Brianna:

Brianna Cardenas (she/her), age 33, Southern California, hEDS. I identify as a queer, disabled woman of color. I am a PA Professor, PA-C (physician assistant – certified), and ATC (certified athletic trainer). My Doctoral degree will be complete this July and will culminate with a publication on the clinical applications of Ketamine. I am the owner and founder of Healed and Empowered LLC, a health education service for people with chronic illness. I believe that holistic healing is necessary to improve one’s quality of life – modalities such as fascial counterstrain, lifestyle changes, select medications, and plant medicines have allowed me to recover from my lowest state of health in 2018 when I was bedbound. I am grateful to be able to do things I love, such as rock climbing, gardening, and spending time with my partners and friends.