Highlighting Black Invisible Illness Voices: Whitney West
Today's spotlight for our 'Highlighting Black Invisible Illness Voices' series is the lovely Whitney West,
Whitney is an incredible chronic illness warrior dealing with Fibrosing Mediastinitis, a very rare condition. She details her challenging journey receiving a diagnosis as a Black female patient asking to be taken seriously. Something that really stands out within the interview is the importance of diversity in the healthcare system and the need for more open ears and empathy to respond to our health journeys.
C: Hi everyone! My name is Celine and I’m the founder of Flowly. As some of you guys know, we’re doing a series highlighting Black voices in the invisible illness community. In case you don’t know, Flowly is a mobile platform for chronic pain and anxiety management. Essentially we teach you how to control your heart rate and breathing to better manage your nervous system. You can find us on the Apple App or on any of our social media website: www.flowly.world. But today let’s cut to the more interesting part, which is featuring Whitney West. Whitney is an incredible invisible illness warrior. She’s a health advocate and is here to share her story with Fibrosing Mediastinitis.
C: So I wanted to start towards the beginning of your journey with Fibrosing Mediastinitis. It is a rare condition. So I’m sure that everybody does know what it is. So if you wanted to share briefly about what that condition means?
W: Yes, like you said it is a very, very rare condition. Only a few hundred people are known to have it. And most of the cases, they really are unsure where it comes from. Some cases they can trace back to around the Mississippi and Ohio River valleys, where you get a virus that comes through. It goes away in your body, but your body doesn’t realize that it’s gone. So it continues from that point on to fight it. So your immune system is kind of overreacting and under-reacting to different things. And what it ends up doing is building a mass in your mediastinum area. And that mass can be big or small and then eventually it will begin to calcify. And when it starts to build and then when it starts to calcify, it builds other things that cause issues in your body depending on where it is and what it does.
W: I started having issues I believe in my senior year in college. And I was diagnosed with asthma. So automatically, you know, if you’re having a wheezing or like a breathing problem, that’s like the first anybody goes to. So I’m like, ‘Okay, asthma? That’s fine.’ I didn’t really think much of it in terms of - Okay I grew up in the country, but now that I’m in like DC, I get allergies. Okay maybe it’s pollution. As I went on, I had always been overweight, but then I had begun to lose weight. So I had lost a substantial amount of weight. Probably close to 100 lbs. And in around 2013, I started to have more difficulty breathing. So I was pretty active in the gym: working out, eating right. And I lived on the second floor. So I was constantly walking up and down those stairs, but one day it came to the point where walking up and down those stairs got very tiresome. So I’m like, ‘I’ve been doing this for a long time. I’m losing weight. There’s an issue.’ So that kind of lead me to start trying to go to a doctor to see what was wrong. And from there, you know, I had some issues with the doctor that I initially found, but ended up being admitted to the hospital for an emergency in 2014 to get my gallbladder removed, which ended up causing me to have a serious case of pneumonia, which lead to them discovering how low my oxygen level was and I ended up having to be on a ventilator for a little bit over a week.
C: And is that when you did get the diagnosis? Was it from that doctor or did you kind of have to move around to different doctors to get that diagnosis?
W: I’d gone to the local hospital in the town in Maryland that I lived in and luckily there was- The pulmonologist that they called in, he knew that, since he was new there, he didn’t really have the ability to treat whatever it was because they could not figure out what it was. So he worked with me very closely and then suggested that I go to the University of Maryland Medical Center. Because they had experts in the cardiology and pulmonology that could likely help me. So I started to go to University of Maryland Medical Center for several months, getting all different types of tests. Back and forth. The doctors there in cardiology and pulmonology were discussing my case all the place at different conferences, different things because it was so weird. The only other health issue I had was high blood pressure and being overweight, but even in the end, it turned out that blood pressure was due to the blockage that was building up in my chest because as I had been losing weight, my blood pressure never changed and my primary doctor had noticed that, ‘Oh that is weird. It should have at least gone down a little bit, but maybe it’s hereditary.’ Because I had no other indications that something was going on. I ended up going back into the hospital again. I actually ended up coughing up the ventilator, which is very strange. I had no injuries to my throat or anything. During that stay, my pulmonologist, who I ended up working with the whole time I was in Maryland, until I relocated to New Orleans, he happened to talk to a doctor friend of his in St. Louis and he ran through my symptoms and the doctor just so happened to say, ‘Oh I know exactly what that is.’ And he said, ‘It’s Fibrosing Mediastinitis.’ Because a lot of the symptoms for it are very strange. You have the breathing issues, you could have the wheezing, the asthma symptoms and then also hemoptysis, which is coughing up blood. And I was having all of those symptoms.
C: And so did you end up meeting with that doctor, or did the doctor you were currently working with bring back the diagnosis and kind of start from there?
W: He brought back the diagnosis and he kind of talked me through it. And he really wanted to a biopsy just to be sure, but I wasn’t really comfortable with it and this was one of the points where I kind of learned to advocate for myself too. I wasn’t really sure and I was thinking about it. He actually came in to talk to me about it, like a day or so later. He just asked me, ‘How do you feel about it?’ I was like, ‘I’m really unsure about it just by how I’ve responded when I’ve gone under and I just don’t feel right.’ He was like, ‘I actually agree and I think you’re right. A little bit too unstable for us to- for me to safely feel comfortable and do that for you.’ I just liked the way that he kind of talked to me. And one of the nurses actually came in another day because I just began asking for like everything I needed. And he became a very good advocate for me. One of the nurses, I’d asked for a breathing treatment, and she told me she couldn’t give it to me because it would affect my blood pressure. So when he came back in, I told him what happened and I was like, ‘I feel like I really need it.’ And he was like, ‘You’re right. That was the wrong thing because if you’re not breathing, it doesn’t matter what your blood pressure is. So if your breathing is off when you stop breathing, that doesn’t really matter.’ So that made me realize that what I’m feeling in my body and what I feel that I need, that I should express that because I know what I’m feeling. And he had a talk with me, he was like, ‘You’re very aware of what’s happening with your body. You’re able to spot what you need, even if you don’t know, you know, what it is medically, you’re able to clearly express what’s going on. So I trust what you say about what’s going on with you.’ So that really let me know the power of advocating for yourself and what you really feel.
C: I feel like that is a really powerful story and experience because not many of us, especially women and especially women of color, are educated and taught to advocate for ourselves. Or even to listen to ourselves and I think that’s also a powerful story in that that shows what happens when a doctor or general practitioner or even a nurse actually takes the time to listen to the patient and how much that can actually change the health and diagnosis journey.
C: How do you feel like your identity as a Black woman has shaped sort of that initial experience? You know, when you’re going through all the different doctors. When this was a rare condition, people weren’t giving you the right diagnosis. Even like let’s say when that nurse wouldn’t give you the oxygen treatment that you needed. Do you feel like it’s been a factor at play, your identity? And if it is, then how so?
W: Yeah, I absolutely do feel like it’s been a factor. It’s just also been great that I’ve been able to find great doctors who actually did listen to me. And some of the turning points were actually when I found practitioners of color. That pulmonologist was a white man, but he was absolutely everything that we was supposed to be doing. But the first practitioner I went to was a white man and I think seeing me as an overweight Black woman, was like, ‘Okay,’ automatically like, ‘It’s because you’re overweight.’ So I had to combat him to say, ‘No I’ve lost 70 lbs, so shouldn’t that make a factor?’ And he was like, ‘Well your lungs are breathing normally. Like your lung functioning test.’ If you do the test and then all the x-rays and the ultrasounds, you see the mass there. And so I had him order tests. I went to take them and it was showing. And I was calling and trying to get the follow up appointment to have him review them to see what was going on and he would never make the appointment, or would cancel it and put it off and in that time, I ended up in the hospital and then finally, while I was in the hospital, I got a call from his nurse to say, ‘Oh now he’s ready to schedule the appointment.’ But it was, at that point, it was just too far gone and so I already had other doctors. So it was just like I could have caught this six to seven months and never had to be hospitalized, at least for that reason. Or if I’d gotten hospitalized to have my gallbladder removed, it wouldn’t have deteriorated so quickly because they would have known everything else that was going on. And then, to even get to the point to see that pulmonologist, I had went to urgent care a few times already with the hemoptysis, the coughing up the blood. And no one, they were like, ‘Oh you probably just cough too hard.’ Or you know just gave general reasons. Nobody really ever kind of dug too deep until I came across a Black nurse there. And she kind of said, ‘It could be the same thing,’ and then she came back in and she was like, ‘But you know, I really want you to go to a pulmonologist.’ When she said that, that’s actually what lead to me saying, ‘You know, I really should be looking more into this.’ If sometimes really those doctors who look like you or who are women of color who actually pay attention or go the extra mile to help you figure out what’s going on, I made it a point when I moved here to New Orleans to find a Black woman as my primary. And whenever I say any kind of thing to her, she immediately, she’ll order tests, she’ll ask more questions, she’ll figure it out, she’ll calm me down and there’s nothing that she just waves off. Even if I’m like, ‘Oh I don’t think it’s so bad,’ she’ll say, ‘I’m ordering it anyway.’ You know, like-
W: She’ll make sure that I know that I feel good about it and that I have whatever results I need.
C: That just speaks to how important it is to have diversity in the health care system, in the doctors and nurses that you’re working with. And I remember my first gynecologist I ever worked with was a woman of color and it actually changed my experience a lot. Versus going to a white male gynecologist, which there are many of. And not to say that they can’t be good doctors if they’re not from your same race or ethnicity, but it definitely I think adds a layer of empathy and understanding and greater complexity because our bodies are all so different. And our health journeys and experiences are so different. You know, where you have to become your own health advocate is a really hard one, right? And it’s really, really challenging and we hear that over and over again. I think most of the patients and users we’ve worked with experience a lot of anxiety. What was your experience kind of with anxiety and when did you first realize you had it? Just kind of walk me through that.
W: So with anxiety, I think it’s probably been something that I’ve dealt with probably my whole life and most of it’s been annoying. I’m a first born recovering perfectionist-type person so it’s just like, you know, I’ve always been concerned with what my grades were, what people thought about me and like a lot of that I’ve been able to shed as I’ve gotten older, but I realize it’s not completely shed. It’s kind of transformed and initially when I got sick, I didn’t think I had a lot of anxiety about it until recently, kind of looking back in hindsight, is I actually kind of discovered something called ‘over-functioning’ and ‘over-functioning anxiety.’ And I feel like that’s how things presented. Like I had to have a whole lot of control over all the issues and I would take on a lot of stuff. Even though, once I got sick I probably should have been sitting down and taking on less, I was just trying to overcompensate or making sure that because I was sick, it didn’t seem like I was sick or I felt like I would be judged for taking a day off to sick or things like that. I didn’t want to be seen as being hindered by my illness. When I reflect on it, it’s like, I need to let some of that stuff go because in the end, that’s what I have to do to make sure that I’m okay. I read an article and it was like, those signs that I read in there are so me. It was like taking on tasks for people that you work with because you know that you could get it done quicker or you didn’t want to take the time to explain it to them and I knew that I was doing that. And I knew I didn’t have the time. So I was just like, with certain things like that, it was like, ‘Let me explain to people what they can do. So they can do it and I don’t have to worry about it.’ So with my illness, I try to do the same thing, like, ‘This is what’s going on with me. This is how it is. I’m going to be off today. Sick day. That’s it.’
W: I don’t want to make any kind of excuses for it. And I just made a point to say, ‘This is what it is.’ I also made a point to go to my Human Resources Office and say, ‘I need to have accommodations.’
W: ‘I need to be able to work from home at least two days a week because at home I have my larger oxygen machine. I know the area’s clean. I know everything’s okay and I can rest in the middle of the day if I need to.’ So I made that point to do those things for me so that I could be less anxious and I can have the environment and the things that I needed all the time.
C: How did you come to the realization you needed to shed that sense of control or the manifestation of that anxiety? What led to that and then how do you manage it today? Like what are some tools that you’ve used?
W: I got to the point where I just wasn’t happy where things were. So I wasn’t feeling like I wasn’t the me that I was before my illness or the me that I was really trying to become and I felt like I was really stuck and I was just I wasn’t moving and I was very stagnant. And I so I was just like, ‘Something has to be done.’ And so I went through the process of really just changing my mindset. Not only around my illness, but around how I was perceived in general. And then also just accepting where I am. I have an illness, that I’m sick, and that it’s there. And it doesn’t mean that it’s something that I like or something that I enjoy. But just knowing that it’s there allows me to know how to work around it or go through it. When I got to that point, especially this year, where my anxiety with this was making me unhappy. It was making me sick. It was just like, ‘Okay you’ve gone through these steps before. What can you do to make your life better?’ Doing some of those things for myself were just like the list of items I made. What could help? And then I try to attack that list and those are some of the things that came from it. And from there, I started doing meditations, breathing exercises, yoga and getting into a little more exercise just so I could also build up my cardiovascular health and health in general. But also, you know, get some of those- that energy going into me so that I would feel more refreshed and more energetic throughout the day.
C: Are there any resources you’d like to share with people to educate themselves more about Fibrosing Mediastinitis? A website or resource that you have found helpful?
W: Yeah, there isn’t much information out there. Actually I made kind of a decision recently to start tagging some of the stuff that I put out there or addressing it directly, so that there can be information for people later. When I first was diagnosed, I know there may be a few more YouTube videos now, but I found one video. It was a memorial for somebody who passed of it. And then there was one community I found and it had been defunct for some years. And so it was just like, there’s nothing. So for me, part of why I started to do what I’m doing is just because there was nothing. And I wanted people to find something out there to at least help or to see somebody who was going through it and I just now recently in the last month found another Black woman with Fibrosing Mediastinitis. And she’s one of the only other people period that I’ve found with it, which it seems like it’s crazy, but I was excited because it’s like, not only did I find someone else who is young and had the illness, but she was also a Black woman. So there’s that ability to relate on those different levels when you find someone like that. So I actually created a group for Black women with chronic illnesses on Facebook. It’s called ‘Sisters With Chronic Illnesses’ because even though we can find a lot of chronic illness communities, because we had all of those intersectional points, some of the questions or some of the experiences we had, addressed in those larger forms, are sometimes ignored because that’s not the experience of everybody else who has them.
W: So I wanted to create a community so we could come in and understand that I went to a therapist to talk about my illness and they told me I was too sensitive, or I needed to be stronger. And we know our counterparts who are white would probably not hear that. It’s like, why do we as Black women get told that we needed to be strong and just deal with pain? Or our doctor is not listening to us. What can we do? You know, telling you different mechanisms to get the testing that you need. So that’s why I really created that community because I knew it was needed because it’s so hard to find information or people who fully support you in that realm.
C: That’s an incredible community and thank you for starting that. Because I think it’s sorely needed and the other thing that, you know, our team has noticed in working with a lot of chronic illness patients is that a lot of women of color will have an autoimmune disease, will have a chronic illness, but not know it- Not even have the information or resources to know that they need to go see, having a diagnosis or talk to a rheumatologist or even their general practitioner to advocate for themselves and say, ‘Hey, there may be something more here.’ It’s an ongoing education. It’s something that needs to be talked more about and I’m glad that we’re able to highlight this rare condition, but it’s still a condition that affects people - Fibrosing Mediastinitis. So thank you for joining us here today, Whitney. And last thing, how can people follow your journey?
W: So I’m @thewhitneywest on all social media and my website is: wwww.thewhitneywest.com.
C: Well, thank you so much for being here and thank you guys for joining in.
You can find more of her story at:
Insta | FB @theWhitneyWest
She has also created FB group for Black women with chronic illnesses: ‘Sistas With Chronic Illnesses’