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Advocating for Yourself as a BIPOC with Interstitial Cystitis

IC You Podcast Episode 20

Hosted By: Callie Krajcir

Featuring: Sabrina Sarro

(Callie) All right, everyone. Welcome back to IC You. I have Sabrina Sarro with me, let's start with a brief introduction about yourself.

(Sabrina) I am a black queer intersex therapist. I primarily specialize and have training in working with black, BIPOC, queer, intersex, TGNC, first gen, disabled, chronically ill folks, and spend the majority of my days, working with people who have all intersections of chronic regional pain syndromes, including IC.

(Callie) Can you go through all of those abbreviations and define those for everyone and me.

(Sabrina) Sure, so I'm black, I have a Haitian ancestry, African descended ancestry. Queer to me can be both a definition and a politic. Politic, meaning how we move through the world, how we interface and interact with different systems, and how our body postures and is positioned against those different systems and within those different systems. So to me queer means making a space for my body, for my love, for the love that I have for all peoples regardless of gender and genitals, and claiming that space that has not been made for me and for queer people historically. Intersex is an umbrella term that really speaks to individuals who have sex characteristics or chromosomes or hormone profiles that do not fit the typical binary notions of what we consider to be male or female. BIPOC stands for black and indigenous people of color. TGNC stands for trans and gender nonconforming peoples. I work with everybody that is not cisgendered, which means I primarily work with people who don't identify as CIS, which just means that your gender identity is congruent with the sex that you were assigned with at birth.

(Callie) Okay. So what led you down this path and area of work?

(Sabrina) First off, just being a part of a historically erased community. All my life has definitely spearheaded and facilitated a deep commitment to my community and communities overall that don't have a home, don't have a space, don't have a body to freely and peacefully exist in. I was really invested in why people of color, black folks, queer folks, disproportionately are in more pain and disproportionately are erased, negated, and inized when it comes to accessing care for their pain. So as a young child being on the intersex spectrum already having a hyperandrogenic profile, already having extremely high levels of testosterone, just already knowing that like my body was out of the binary and seeing how doctors really mistreated me, so thatled me down the path of wanting to hone in on narrative work and really wanting to be in direct communication with my peoples. We're in pain and we are not getting the help or support we need and the medical industrial complex doesn't seem to care, especially when it comes to specific bodies, specific black bodies, and specific queer bodies being in pain, coupled then with things like IC or symptoms and highly underfunded systems.

(Callie) So can you dive into medical racism a little bit more?

(Sabrina) Speaking on behalf of myself, my symptoms started a year ago. I cannot find urologists that look like me. I can't find queer urologists, urogynecologist. I can't find gynecologists, I can't find anybody underneath the uro, gyn sector that looks like me, understands what intersex is, understands any of that. I think also in my journey, being told that my symptoms are all in my head, being told that I'm making a big deal out of things, because I bring up medical racism to my doctors. If they're talking to me in a certain way, or if they're talking to me condescendingly, I'm like, do not forget that you have a black patient right in front of you. That there is a history of reproductive violence that has also occurred in the face of this. That's been huge, but I'd say that the biggest thing is not being able to afford these very fancy out of network doctors or going nearly bankrupt to pay for them and really not getting better. Just not being seen as a person and noticing very deeply the attention, care, kindness, and warmth that my white counterparts might receive, who might be in the same position that I am in or my BMI or weight.

(Callie) The weight bias just across the board in our medical system is such a problem. I used to work in weight management as a dietician and I witnessed so much that just shouldn't have been happening or hearing horror stories. I can't believe doctors can treat patients this way and so that's one of the reasons I left.

(Sabrina) I mean, the BMI is intrinsically racist, like I've had so many doctors telling me just lose weight and maybe that'll help your burning. And then I have to go into this whole psychoeducation about when you have high testosterone it is extraordinarily hard to lose weight. have to then educate people about PCOS, intersex, all of these confounding variables and then i end up leaving with nothing. You're hostile, you're volatile. They say you are an instigator to which I also say that's racist because that falls into the whole angry black woman trope. I'm not angry, I'm stating the truth. But if I speak, if I assert, if I use my tone, I get fired or they tell me you're making this all about race or you're trying to make a problem. It's just these small micro moments that people are like, well, that's not connected to race. To me, everything is connected to race because it is, and anybody that says otherwise, probably isn't a person of color and probably doesn't understand any of the things that I'm dissecting. I just wish people would understand the black body coupled with chronic pain. Black people disproportionately experience higher levels of chronic pain. We are predisposed to higher blood pressure, we are predisposed to all chronic health conditions. We are disproportionately affected by and disproportionately at a higher risk for obesity, and that is because we live in poorer areas. We live in areas that have less access to whole foods. Foods that nourish us in different ways. We have less access to healthcare that can allow us to see a range of different doctors. We don't even have many doctors that look like us in several fields. So all of my patients that I see primarily are in severe chronic pain, some of them cannot work. Some of them need my support filing for disability. We get paid less. We are being killed by police in the street for existing . We don't have access, that's really at the heart of it. We don't have access, and if we do we're burnt out or exhausted by still living in a state of warfare and really in a state of genocide still in this country. In my journey, I was like, wow, I can't find a single person that can relate to this.

(Callie) I know that there are people out there and I'm sure that are gonna listen to this episode and just feel so seen and so heard. So thank you so much for talking about this. So can we go into how your IC symptoms started?

(Sabrina) I had a UTI in October, 2020. I took a normal course of antibiotics and I felt better. My only symptom was burning when I peed. Then six months later I woke up and it was burning again but it hasn't stopped for a year. It has definitely spread now to my entire vulva. I have seen over 40 specialists, I have spent over $20,000 trying to get a diagnosis. I have done every single medical procedure you can think of, I have done a cystoscopy, I have done an MRI of my brain, my pelvis, my thyroid, I have done two cat scans, three ultrasounds, MicroGen testing. I worked with a nutritionist who was lovely and did the elimination diet with her and followed her protocol and I am here. So no doctor has slapped me with the IC diagnosis, but I claim that at this point I am absolutely on the spectrum. I burn when I pee, that is a major symptom of IC and I have the vulvodynia diagnosis. I'm on the Gabapentin and they said my pelvic floor is really tight. I use Valium suppositories. They did a scope and they saw squamous metaplasia. It is a benign finding in most female bladders where the vaginal epithelium starts to ressemble that of the vagnal tissue. It can look like dandruff in the bladder. They think that can be bothering me. So im like what is the deal with squamous metaplasia cuz you're telling me that my scope was perfect, but we got squamous metaplasia. Now I have burning in my legs, in my feet, burning everywhere now. So I'm like, this is progressing. I don't even know what my IC phenotype is because on one hand I have squamous metaplasia in my bladder, on the other hand, they're telling me that my pelvic floor is tight. I don't have a diagnosis, at this point I don't care about having a diagnosis. I will accept any diagnosis, I just wanna get better. I've had my urethra swabbed. I have been STI tested thousands of times. I joined the IC groups. A lot of them have talked to me about things like marshmallow root or slippery elm or Desert Harvest. I'm grateful that I've learned so much so that I can use that and equip my community because I don't ever really see many black people in those groups. I don't see any people of color. Imagine all of the black people right now that are suffering, that can't afford to see anyone, or that haven't gotten a diagnosis, who can't afford Desert Harvest or who can't afford the $90 Valiums that are not covered by insurance, or suppositories, or the lidocaine, right? We don't talk about this. I've had so many doctors try to gaslight me. An expert on IC told me to my face that in all of his studies, this area is not a commonly associated symptom with IC, burning when you pee is not a symptom of IC. IC is when you have bladder pain, when you have suprapubic pain, when you have frequency, when you have urgency, when you have nocturia. He told me that it sounds like you have a nerve problem and that you have nerve damage to your urethra. It's either that or the squamous metaplasia. I asked him about the subtypes and he said, lots of urologists don't even know the subtypes. They did the Q-tip test on me and I was on fire. He put the Q-tip on my urethra and I was like, that's the spot. That's where it burns. My actual vulva doesn't really burn, I think it's just referred pain. Sometimes I have pain during sex. I am intersex and have screwed up hormones but why would anything show up randomly now. I can eat anything. I can literally eat anything and I'm grateful for that, but it's like glass when i pee.

(Callie) What advice would you have for people of color who are in your situation, who are going through something similar?

(Sabrina) I would say, do not give up on yourself. Do not at any point surrender, if you feel like they are gaslighting you, misrepresenting your symptoms, chalking it up to whatever it might be, know that you have people in your corner. Know that there are black and brown therapists of color who are gonna be in your corner. My biggest piece of advice is that you're not alone and that people of color are out there, we just need to find one another, we're suffering and we see you and we're here and we got you. Don't take anything from people that are not treating you with respect. If you feel like a provider is doing whatever because of your race or because of your body or because of anything, it is always within your right to bring that up, terminate with that physician and find someone better. Come ready, come equipped, come with your arsenal of what you know, to be true about your divinity, your sacred understanding of what's happening in your body. Nobody can take that away from you. We all know our bodies. Stay firm, bring allies, bring your people, bring your partners, bring your friends, talk to your therapists about it, bring them anything. You can get better and you deserve better.

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