Episode 21: Living with Chronic Illness and Disability in the UK with Jameisha Prescod

Episode 21: Living with Chronic Illness and Disability in the UK with Jameisha Prescod


Jameisha Prescod is a London-based activist who lives with lupus, Raynaud’s, and femoroacetabular impingement (FAI); she is also waiting on possible diagnoses of endometriosis and celiac disease. She is the founder of You Look Okay To Me, an online platform for pain and chronic illness that is chock-full of content about invisible illness, disability, and their roles in tech, art, culture…and everyday life. In this episode, Jameisha sits down with Lauren to talk about gaslighting in the medical industry, and how this has affected her not only as a woman, but also as a woman of color; she also talks about her journey to diagnosis, self-advocacy, and her experience of workplace discrimination. At 23, Jameisha is not only wise beyond her years, but she is also incredibly open, honest, and real. She has founded a thriving community and regularly produces entertaining videos about living with chronic illness and disability, which appeal not only to the Spoonie community, but also to those seeking perspective and understanding.



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Jameisha Prescod You Look Okay To Me

Lauren: All right guys, thank you so much for joining us today. I'm here with Jameisha Prescod, who is a survivor of multiple invisible illnesses, including lupus, Raynaud’s, and FAI, which is femoroacetabular impingement, which she's going to tell us about. And she's almost there with a diagnosis of Celiac. So she's going to tell us all about her health journey. She's also the founder of You Look Okay To Me, which is an amazing advocacy website, full of videos and information that she's put together about living with disability and chronic illness. So Jameisha, thanks for joining us.

Jameisha: Thank you for having me. I'm really excited.

Lauren: Yeah! Another thing, if you haven’t noticed … Jameisha is also British. So your experience has been in a different healthcare system than what some of our listeners may be used to hearing about. She is our second British guest so far, so it will be interesting to hear about how you've journeyed into wellness on the NHS.

Jameisha: Yeah, it's an interesting one!

Lauren: Well, let's get right into it. So tell us when and how you first learned that you were sick, and what steps you took to get diagnosed.

Jameisha: So I think the first time I realized I was sick was around 16 years old, when it was truly something I started to think about. In the UK, we finish high school at 16. And then we start something called sixth form, which is between high school and university, so it's 16 to 18. When I was going to school at that point, I just started getting weird symptoms. I decided that back then I was going to work out a lot; I wanted to get fit. It wasn't really about body shape or size. It was more, I just wanted to feel strong. So I started working out every day, and eating better and drinking water, and doing things like that. But then, for some reason during the time that was happening, I was getting extremely tired; extremely painful joints and muscles. So I kind of chalked it up to the exercise. I thought, ‘Okay, maybe you're just exercising too hard. You're not stretching enough,' or something. But then after a while, I just thought, 'this is not right'. And I stopped exercising for a period of time … and I had a massive flare. I would say, probably one of my first ones, where I was sleeping for so long. I was missing school sometimes or being really late because I was sleeping through the alarms. I had trouble walking, shortness of breath, loads of different symptoms. And I was just so confused. I kept thinking, it can't be the exercise anymore. I can't justify that. So then I went to my GP and explained what was happening, and they shooed me away a couple of times, saying I was fine. Tested my vitamin D, tested my iron, the usuals. Then they just said, “You know, we've tested all the blood and nothing's wrong, so we don't really know what to tell you.” And then I think I just sort of took it upon myself … and I know doctors don't like this is, they’ll probably scream when they hear me say this … but I Googled my symptoms.

Lauren: You were ignored already by your caretakers and pushed away a few times, I don't blame you!

Jameisha:  Yeah, what else was I supposed to do?

Because I hated feeling that way and didn't have an explanation for it.

So I Googled my symptoms, but  I didn't do it in a way where I was like, ‘Oh, I've got like this, I’ve got so many things, and I’m dying.’ It was more like, ‘Okay, here's a list of five things it sounds like … it sounds like arthritis … it sounds like it could be lupus … maybe Lyme disease … I do live in a wooded area, so it could be that. Sjögren’s syndrome and fibromyalgia. So: okay, we've got these five; it sounds similar. So, my parents pay for this kind of private health care system; we don't have private health, but sometimes you can pay. And from time to time, you can get a private sort of treatment, I guess, because you've been paying into this thing. We don't use it very often, but we sometimes call them up for advice. And they basically said, “If you think it's lupus, these are the blood tests you should be asking for. Just have a conversation with your doctor and say, ‘You know, you say you tested everything, but actually, did you test these things?’" And we went, and we did that. And as soon as we asked, they said, “Okay, cool, you need to write us a letter, and then we'll refer you.” And that's where the journey started, with getting referred to a rheumatologist.

Lauren: It happened because you had to take it upon yourself to do the research, to get the resources to then bring to your doctor?

Jameisha:  Exactly. It wouldn't have happened otherwise. The time before that, the doctor had said, take Berocca … I don't know if you have that in America?

Lauren: We don’t, but it's basically like a cold remedy.

Jameisha: So basically you put it in a drink, and it fizzes and it makes it orange-y. It tastes very nice, but I don’t think its gonna help!

Lauren: It’s like Irn Bru, and tastes like Fanta!

Jameisha: So that was the journey of going to a rheumatologist, and the first one I saw. She just said it was arthritis before even doing an X-ray. I thought, she’s a bit crazy so I’d better go to someone else. The second one was amazing. She said, “It sounds like lupus to me, and I'm going to test all these things …” It was about three pages of stuff. But then, when I went back to get the results to see if I had lupus or not, I didn't see her, I saw someone else.

And they were very dismissive. They were, like, “Oh, yeah, because you’ve got lupus …blah, blah, blah …”  And I was, like, “What?! What? I have lupus? Hold on, this wasn't said to me before.”

Lauren: You went from not knowing what you had to being, like, “Oh, it’s lupus”.

Jameisha: Yeah, really dismissive, like I already knew. But then, I went back to her for another checkup; at that point, they wanted to see me quite frequently. And all of a sudden, this woman was like a different person. She was, like, “Oh, I don't think it’s lupus anymore.” I said, “You don't have my notes in front of you. Also, I do recall certain antibodies being present in my blood.” “Oh, well, you know, that’s common among certain people sometimes. I don't think it's lupus. I think it's a psychological issue that you're having here. You know, I think it's depression.”

Lauren: The old depression card — when it’s a physiological symptom! Thanks, guys! Thanks for that!

Jameisha: Sure. And you know what?

Some people, when they experience fatigue, have depression. That’s fine. But for me, I just didn't feel like that was the case. You can have depression and have fatigue and stuff. And, I thought that she was being dismissive of depression in that regard as well, because depression should be taken very seriously.

But she also then said … and she conflated the two because they’re not the same … “It’s fibromyalgia, and I think you need to take go see a psychotherapist because I think it's that.” I was crying my eyes out; I was really upset because I knew that this wasn't the case.

Lauren: If it makes you feel any better, I had the exact same thing happen.

Jameisha: It’s so common!

Lauren: I was told to go see a psychotherapist, and I was, like, ‘What?! If you read my chart, you'd know I already go to a therapist anyway!’ This happens so much, I think to women especially. We’re considered hysterics.

Jameisha: Exactly. And it's sad how common this story is.

And it's sad that when I say this, everyone goes, “Me as well! Yeah, that happened to me!” That's really sad and worrying … how common that is.

So we ended up complaining and luckily, because of the complaint, got referred to a specialist. This guy is the only person in the UK, I believe, who's a professor … I don’t know whether he's the only person, but I know he's a professor of lupus specifically. And there's a ward in Guy’s Hospital in which lupus patients who are referred to him get seen there. I'm on the milder end of the lupus spectrum; I don't have organ failure or anything. I don't go very often, but he does see me and reviews everything. And that's where I am now with a lupus diagnosis. I did get there eventually. But, there was a period of time of waiting where I just felt like, ‘Am I crazy?’ Which, by the way, having depression doesn’t mean you’re crazy, but  … am I just making this up? Maybe it is me? You start questioning yourself and what you know about yourself. It was actually really difficult; it was not nice. Talking to people did help with that, because you realize you’re not the only person going through that experience.

Lauren: Yeah, and I mentioned how we often think that that's something that happens to women more than men. Do you think there's also a factor here, being a woman of color, that that also may have affected your doctor’s impression of the situation, and may have affected the reaction to it as well?

Jameisha: I feel like that might be the case, but there's not anything for me to say, this happened, I feel because I am a black woman.

I do feel there is a prejudice with black women.

What I will say … we can mention this … I'm on the journey to potentially investigate endometriosis. That is where I see more of my ethnicity, being dismissive of my condition. I obviously have experienced a lot of the symptoms present with endometriosis, on multiple occasions from when I was 13 years old. I've been trying to kind of talk to doctors about this.

And it's always … “Well, you know, black women naturally bleed more than white women.”

Lauren: I can't believe someone actually said that!

Jameisha: Multiple times. It's not just one person. I would say, probably all the doctors I've spoken to about this have said to me: “Well, yes, but you know, it's quite common for black women to have very heavy periods.” Does that make it okay?

Lauren: Does it does it make it okay that I'm in pain right now?? That’s the bottom line, right?

Jameisha: Yeah. So I think sometimes there's this idea maybe … and ...

I don't think it's conscious, I often think it's unconscious … that black women can withstand more pain than other races, and therefore are not afforded the same sensitivities.

Maybe the other ethnicities are as well; I can't speak for other ethnicities because I'm not that. And there's nothing that's really been outright sort of suggested to me that maybe that does come into play. I do know I just can't sit here and be like, “Okay, this happened. This happened. Other women have experiences like that. I don't have many like that.” I would say my age comes into play, or the way I look. I've got the piercings now, which I think ages me a bit. I think people think I'm a bit older now. Before having these though, I think people assumed I was a lot younger than I am; I'm 23 and some people think I'm 18 or 17, or something like that.

And so because of that, even though my age is on the chart, they're quite condescending when they're talking to me — like I'm stupid.

I think the way I look in terms of age has a part in that, which is why I bring my mum to my appointments.

Lauren: I do, too! It's so important to have that  advocate with you sometimes, to just shut ‘em down when you just don't have the strength to do it.

Jameisha: Yeah, and it's funny because me bringing her … what that does now is make them look at her and ask her questions about me and not talk to me. I have to say, “No she’s here as support in case I forget something; she's not here for you to talk to her on behalf of me, though.” So I would say those comments come into play. And I do think being a woman comes into play, absolutely, 100% as well.

I think, being a woman, especially when you have a chronic illness, and trying to get diagnosed … I think we’re often misunderstood and under-diagnosed. I don't think doctors take us very seriously. At this point, I don’t always think it’s a conscious bias; I think it’s ingrained in the medical industry. And I also think our reproductive health is not taken very seriously. It’s quite dismissive; like it’s not that serious. The fact that one in 10 people have endometriosis — and likely more, because as someone so rightly pointed out to me that trans-people can also suffer from endometriosis — and it’s still not taken seriously, and definitely, more needs to be done.

Lauren: Definitely. It's really upsetting and shocking when you look at the statistics in terms of how much longer it takes a woman to be diagnosed with any kind of chronic illness, compared to a man. And yeah, how that would affect the trans community as well would definitely change all of the statistics. And I appreciate you mentioning them, too. So we've talked about the lupus part of your your health journey. Can you tell us about your other chronic illnesses and how you found out you had those going on? You also mentioned the endometriosis and that you're on your way to to being diagnosed. But in terms of the Raynaud’s and the FAI, how did all of that manifest?

Jameisha: So, Raynaud's, actually, was probably one of the first symptoms I've ever experienced before I even knew that I had lupus — from childhood. I actually thought it was quite funny to have Raynaud’s; my fingers would get cold very easily and change colors, and I used to think it was the coolest thing ever. I thought it was so amazing!

Lauren: That’s one way to look at it, like a superpower!

Jameisha: (laughs) Being 8 changes the way you think about things, for sure! But then, I would think, why does it take so long for my hands to warm up? I didn't realize it wasn't normal … how long it took, an hour, sometimes two hours for my hands to actually be warm. Or at nighttime, when it was not that cold out, and from my ankles down to my feet were ice cold. That's not normal. So actually before I even had lupus in my mind, and that was way early on, it's something I've kind of always had on my mind. The FAI, I would say presented itself when I was 16 as well, but I ignored it for a while.

My surgeon says that FAI is something quite common amongst people who are quite active.

I was very active, very young. It's a fairly common injury, apparently, amongst - I think it's American football players - and people who do lots of jumping and activities. I used to run track and do that type of stuff, from about 10 or 11. And they say that it can sometimes happen when you're growing; especially through puberty, it can deform the hip joint. It’s quite common amongst young people to have this illness. My mum and my aunt both have it and I do think it's partly genetic, because they also were highly competitive in sports in school as well. So I think that began to present itself around the same time I was getting diagnosed with lupus — but I thought it was a lupus symptom. And then when I told my professor, Dr. D’Cruz, “Hey, I've got this hip problem,” he did a hip exam and said, “That's not lupus because your bones are clicking. That's nothing to do with rheumatology; I can't really treat you.” And that's when the journey of having FAI happened. And once again, I had to go through the journey of people not believing I had this issue, because it showed up with X-rays, MRIs and CTs, but not very well. And regular hip doctors are a bit like, ‘Oh, it's not coming from your hip. It's probably your lupus.’

Which, side note, is another thing that happens when you have multiple chronic illnesses — a bit of ping pong blame, trying to blame the other chronic illness when it's not that.

And I have to actually name-drop my doctor sometimes … “Well, Professor D’Cruz says it's not lupus. So are you insinuating you know more about lupus than Professor D’Cruz? Because you don't. So if he's saying it's not lupus, then it's not lupus.” I have to name drop, otherwise they won’t take what I'm saying seriously. And as soon as I drop his name, that's when they go, “Oh, well, you know, maybe it's not lupus, but then it's not your hip.” And I say, “So if it’s not my hip, and the pain’s in my hip, where’s it coming from then?” “Well, I don't know. But it’s not your hip.” And once again, the long process — till I find a doctor that takes me seriously. He decides to do surgery, because I went through a process of getting steroid injections and doing everything I could, physiotherapy, to try and make it better. But at the end of the day, if the bone is impinging on the hip ball, there's only so much physio and steroid injections you can do before you need to actually do something about it. So I've had two hip surgeries on that hip. And the first time … I don't know …

I think most people who have chronic illnesses know the relief when someone tells you that there's actually a problem. Normal people might think, why are you relieved that you have something wrong with you? I think it's just to prove to yourself, that you knew in your mind something was wrong and it's not made up.

So after the surgery, he came to see me and said, “Yes, we went into your hip and there was impingement, there was a bit of damage. I remember being high on the morphine, and I was just, like, “Okay, yes!” Like, I wasn't crazy. Actually going inside and doing the surgery, and then coming out and saying, “Yes, it is your hip.”

Just the sense of relief. I can't describe that sense of relief to anyone. And I know most chronic illness patients know what it feels like. You want to just cry … all this time, I've been fighting, fighting, fighting. And now I’ve been proven right.

Lauren: It validates everything you felt up until that point. And it's a total vindication. I mean, it's interesting that you were mentioning how you have to name-drop your male doctor and the agony of how you’re almost required to drop this man's name to recognize what's going on with you as a woman. Even though it's not necessarily a female-centric disease, FAI … the irony and all of your symptoms and everything you've gone through and being dismissed as a woman — and then needing a man to legitimize you -- it's unreal.

Jameisha: Yeah.

And you have to play the game sometimes in order to get the result. Because at the end of the day, realistically, I want to not have these things.

At the end of the day I know something's wrong, though. If you're right, you're right. I don't fight doctors if I think they could be right. But if I know that what you’re saying doesn't make sense, that's when I get frustrated. Lastly, obviously - I'm near a diagnosis of celiac. Most likely it will either be celiac or some kind of gluten intolerance which is slightly different from celiac; wheat intolerance or something to do with bread, basically! But same thing. So I've had stomach issues for a while. Once again, and I'm really thinking as I'm talking to you … something happened when I was 16 that set off these things, because I had stomach issues from 16. I remember having an issue where I couldn't walk to school, because my stomach pain was so bad. I did walk, but I was bent over and it took me probably 40 minutes to walk down this one road. I was being dumb; I should have gone home. But I'm one of those people, where, if I've gotten most of the way, I'm going to get to school; I'm gonna get there. That was back in high school. So now, I started to realize that bread was bothering me, so I thought, ‘Okay, maybe it's just bread, maybe that's the issue.’ And I sort of would ignore the symptoms. But the stomach issue was always around. And then these last couple of months, I just started having these strange symptoms, like really bad stomach pains when I was eating sandwiches. I'd go to work — I was freelancing — and I would eat a sandwich every day of that week. And by the end of the week, I couldn't get out of bed because my stomach was hurting so much. That's when I started to think, there's something more to this. So I went to the GP, again. A student doctor saw me, and interestingly enough when I explained my symptoms, he said, “That sounds like celiac to me.” And this is someone that's just starting out in their medical career. But when I got passed over to this other doctor, they were, like, “I mean, it's going to be IBS, isn't it?” Very dismissive. Once again.

Lauren: If it’s stomach pains, that could be an IBS symptom, but it sounds like it's very specific to wheat and gluten for you. Which takes you from IBS and into celiac territory. But it's interesting that, as you say, it was a younger, student doctor. And I wonder if, perhaps in the younger generation of doctors coming through, maybe there's more of an awareness being fostered of some of these invisible chronic illnesses?

Jameisha: I think so.

I've noticed with some student doctors, some of them can be quite arrogant. But with some of them, there's more of a sense of wonder and curiosity. And I think with the NHS, sometimes I feel like it’s beaten out of them; they just get tired sometimes. I think that's what happens to some doctors, especially with the way our cuts are going.

But I think early on, there's this kind of brightness with some of them, a bright sense of curiosity and wanting to just really get started. And sometimes, that can be to your benefit, because you go to the other doctors and they’ll say, “Well, I've seen this all before, you know.” My mum has IBS. My mum had to be in hospital for a week because they didn't know what was wrong with her, because of IBS. So if you’re saying, “It’s going to be IBS, isn’t it?”, once again, it’s dismissive. It might be, but some people really struggle with that illness. Just because it’s not got a grand name of celiac or Crohn’s, it doesn't mean it's not painful. It doesn't mean it doesn't affect people's lives, and it could really damage people. So, once again, I don't like the dismissiveness of saying ‘It’s that as well.’ But then, last month I had my endoscopy and colonoscopy, and I thought, I don't think they’re going to find anything. And immediately, the guy who did it said, “That looks like celiac to me.” They’re going to check, but I can see it almost already because people with celiac have villi, the tentacle-looking things in your stomach. And if you have celiac, they’re really flat and short, rather than standing up and raised. He said, “You have damaged stomach lining and that looks like celiac. I’m going to take a biopsy and check.” But he saw it straight away. So obviously I've not got an official diagnosis for that, but he didn't see that without a reason.

Lauren: Well, I think with the celiac you’ve been a little lucky. You've had a few doctors who actually knew what they were doing — except for the IBS guy. And the person who performed the endoscopy was also right on it as well.

Jameisha: Yeah, but I have to say …

Why do I have to fight every time? Why does it have to be like that? Every time! Why does it have to be every single time I've got to fight with you? I want to work with you to figure this out. I have to come armed with notes and dates and pictures. Sure, that's good to do. But why do I have to do that?

God forbid, if I didn't have that mentality. And I only have this mentality because of lupus, because I was proved right.

Where would I be if I decided to give up?

I don't know how far this would have gotten. How far would my lupus have progressed? I have an aunt that passed away from it, because it got diagnosed very late into her life. So I just always wonder … if I didn't push, if I didn't fight them on this, where would I be? And that scares me. And that's why all my friends, even if they have something small or they think something's going on, I push them really, really hard. And I say, you know, you really have to keep going back. I'm on them like their own parent. Because they don't know everything. And they are pushed to the limits as well, because of these cuts with the NHS and the NHS being sold off to private companies and whatnot, as well. But yeah … I mean, that's quite long-winded!

Lauren: No, I think it’s a very fair description, because you're really giving us a sense of that frustration and the anger that comes along with being chronically ill; because no one wants to feel this way. And that's the irony as well. So many of us go into these appointments, and we say, “I’m sick,” and the doctor tells us we're not. Or a doctor tells us we're sick with something that it clearly isn’t. And then we have to do the work to push back, to get coverage, to get the right doctor, to get people to understand what's going on. So we're having to do extra translation, and I've had so many people give a tip of tracking your symptoms, so that you can give your doctors data, because that's sometimes the only way some of them understand it. They’re not going to understand if you come in and you say, "I feel this way. And I feel that way.” They want hard data. So all of the accommodations that we have to make to try to be understood ... there also needs to be a give-and-take on the side of the medical system, as well. And it's frustrating.

Jameisha: Very much so. I went to a talk the other day … there's an app we've got in the UK; I don't know if you have it. Its called Babylon

Lauren: I haven’t heard of it, but it’s possibly available in both [countries]; we’ll have to look it up!

Jameisha: So it's available through the NHS and it's basically like a GP in your phone. You have to be a member of Babylon. And basically, you have 24-hour access to the GP; it’s artificial intelligence and that type of stuff. And I went to the talk at a med school and the creator was there … the talk was open to the public. I felt like I was the only non-med school student there, so I tried to pretend I was a med student! But one student made a joke because they showed a demonstration of the app. And it basically insinuated that this person may have had this type of illness … I can’t remember what it was … and one student put their hand up, and said, “It’s so funny that you use the example of X illness because in our med school, they laugh and say, ‘You know, it's almost never that one.’” And the creator of the app said, “But you see, this is why I have the app, because at the end of the day ...

... humans need to work with artificial intelligence because artificial intelligence has less of the bias that you have.

For example, you having that kind of reaction of ‘Oh, it's never that one’; artificial intelligence doesn't think about ‘it’s never that’. It just says, ‘These are the symptoms that we think it is and they match up with these other illnesses.’ So they've gotten affixed to you. Okay, it can be this, this, this and this … it is your duty as a doctor now, using artificial intelligence, to test it anyway. Not giving into your human bias. Because if you work together with the AI, you've got the AI machine which doesn't have human experience, which you have — which is amazing. But then, the artificial intelligence will have less of the bias and therefore force you to check certain things. What that will mean is, there's someone that you think is coming in with a stomach bug, who may have stomach cancer; that doesn't slip through your net perhaps as it would have done if you hadn't tested it because of your human bias.” And that to me was just like, Wow! It's really interesting, because it shows that mindset sometimes gets brought in fairly early on in med school.

Lauren: Yes, absolutely. Well, and maybe not even just in med school. Maybe also it’s some of the biases we're talking about, about being a woman and coming for treatment. Or being a woman of color and coming for treatment. Or being trans and coming for treatment. The biases that come along with these other sorts of markers that people judge us by. It’s really interesting, and it sounds like that app was probably developed, at least in some part, to combat those internal biases. So that's a really interesting take on everything. And wow … if trainee doctors are able to work with AI and are able to use AI as a bridge - to bridge the gap in communication … it's sort of weird because it's like, wow, we need artificial intelligence because we can't communicate directly? But what it's revealing is so true.

Jameisha: Definitely, yeah.

Lauren: So in terms of the illnesses that you have, what steps have you taken, aside from advocating for yourself and bringing your mum to appointments and, you know, really pushing for answers … what are the other steps that you've taken to control your health? Have you been doing regular medications and different therapies to try and control symptoms?

Jameisha: At the moment I take regular medication for lupus only, just because the other ones don't have medications that come with it. I do physiotherapy for my hip; it's still painful at the moment so I've been trying to do swimming and I have an exercise bar. To try and keep myself active. I miss being fit. It might not be a goal I ever get to, but having some kind of goal of trying to maintain some kind of fitness level is something that I enjoy. I'd say one that's a bit more abstract … is whenever I'm in pain, which sometimes can feel it’s all over my body … slowing down and actually asking myself, where actually does it hurt? I have an app now where I can point where it is on a human body and it tracks it on that day. So, if anything happens, I can say, “Okay, this is where it was hurting that day, specifically.” Because I don't think I do that very often. I just say, ‘Oh, it hurts everywhere.” But actually, it’s, ‘No, it's your left shoulder, and it’s your arms going down to your fingers, and it's your toe and your right hip.’ So I do that a lot. Just so I'm really clear and aware of which part of my body is actually giving me some kind of signal that it's in pain.

Lauren: And that’s what the thing about pain, too; because chronic pain does become a thing where it sort of takes over your mind and you do start to feel it everywhere because you tense up. You have reactions in your body and muscles, tightening in sympathy, and it can be really hard to map out exactly where that pain is. So that’s a really smart tip.

Jameisha: This one is definitely more of a recent thing, for sure. I'm not diagnosed with celiac yet, but I've been eliminating gluten from my diet to see if it's been helping me. It's really f*cking tough, mate, it is! When I first realized that it might be celiac, I thought, ‘Let me start now. Let's just see how it works. Let me not wait for the diagnosis.’ And I walked into the cafe where I work, and I said, ‘Okay, I'm going to eat something!’ They write the allergens everywhere, which is great, but it was like … gluten, gluten, gluten, gluten!

Lauren: And that’s just in the last decade, right, that they’ve been doing that?

Jameisha: Exactly! You would have had to work it out for yourself back in the day, not even that long ago to be honest. I was just, like, ‘Damn, what can I eat?’ But now, I say, ‘I need to buy gluten-free porridge so I can have my porridge in the morning; I need to buy gluten-free bread if I want a sandwich.' If I eat out at a pasta place Coco di Mama, I have to ask for the gluten-free fusilli pasta. It sounds so, like … I guess, first-world important.

Lauren: It's still a thing. Just because it's a first world problem doesn’t mean it’s not a problem.

Jameisha: Exactly. And it's not like people in non-first world countries don't have celiac. I mean, they probably do.

Lauren: You’ve mentioned that you’ve advocated for yourself, and that you’ve had your mum there at appointments with you, so that she is there also as an advocate or a buffer. I’m wondering, how that advocacy and having her there has affected your relationship with her? But I'm also wondering how advocating for yourself has affected your relationship to yourself, whether it's affected your self-confidence as it's developed over time?

Jameisha: It almost feels like she’s gone through it as well. She doesn’t have the symptoms, but she knows exactly the feeling of being pushed back and having to fight all the time, because we've kind of been in it together from the very beginning. So, you know, we have that understanding. And she's had her own issues with health. I don't go to her appointments, because usually I'm at school or something. But she might bring my granddad, who used to work at our local hospital for a very long time, or she might bring my grandma to her appointment.

It’s almost that her coming to my appointments has sparked this advocacy in our family where we will go to each other's appointments if we feel like we're going to be taken advantage of. Because I also think elderly people get taken advantage of, and are not taken seriously.

So my mum goes to my granddad's appointments as well. And we all kind of just advocate for each other, and make sure that we're there. Not every appointment, but for the key ones where you feel like, ‘Okay, this is a big one. And I think we really need to get this message across.’ We try to show up for each other. And I think it really helps. I don't care what the doctor has to say about me bringing my mum at 23 years old. I need someone here, because you might say something to me and I might miss something, but having that person there — it does help. And it's hard to do stuff alone. It's really difficult. So I even say to my friends, “If you’d like me to come, I'll come as well and I'll sit there with my notepad.”  lt's really helpful. And I guess when looking at myself, I think it has helped my self-confidence. I feel like it's extended outside of illness, just in general, because I feel like I was a very keep-calm-carry-on type mentality … just keep your head down, it's not that serious, don't complain about it.

And it's not really complaining; it’s speaking up for yourself and saying what you need to have. And while that started in the hospital, and the doctor's office, it’s extended to the workplace where I tell people: I need this in place to do my job.

Because of my chronic illness, I need to have it in place. And I wouldn’t have said that before. In the early stages of my lupus, I wouldn't have said that because in my mind, I was a completely able-bodied person. I just had this little thing. Rather than, you have this thing that does affect your life. You will need adjustments in certain pieces because if you keep masquerading and pretending, you're going to suffer an injury or just make yourself feel like crap. And I guess that, in turn, has advocated outside in my personal relationships, too — where I've had friends that didn't really understand my chronic illness, and therefore we're not really friends anymore.

Lauren: It's interesting, because what you're saying is that really that advocacy within your family and for yourself, it has strengthened all of those bonds. Not only has it it strengthened your ability to speak your mind and ask for what you need — and to separate the wheat from the chaff as it were, and let go of people who weren’t important in your life — but it has also strengthened those bonds within your family, which is wonderful. It's kind of a blessing and a benefit to being ill, I suppose, isn’t it?

Jameisha: It is, definitely.

Lauren: It definitely puts a positive spin on chronic illness! So can you walk us through what a typical day might look for you? I know there's probably no such thing as a typical day because symptoms manifest in different ways. But on a daily basis, how are you navigating your symptoms and managing everything, and making it all work?

Jameisha: I don't know, It's difficult. I started a new job and it's full time, so I've been trying to sort of stabilize myself in that. So I guess a typical day … I wake up around 8.30. I start work later than everybody else on my team because of that fact. Because London transport during rush hour is awful. And I just had to explain that I can't stand on the train. I can get up in the morning; I just can't stand on the train that long. So 10 o’clock is almost the earliest for me, because I'm just missing that rush hour. Sometimes I still have to stand, but it's not as crammed and packed as it would be maybe if I was having to come in for 9am.

Lauren: Because its not like you’re in a wheelchair and people can see you need space, or you need a seat.

Jameisha: But even then, at rush hour, how are they even going to get on? London transport ... a lot of it was built in the Victorian era. So it's very inaccessible. It's really bad. They're trying to change things now; they’re really trying to update it. I think by 2030 they want to have most of our stations accessible. But it's going to take a while because these things have been in place for hundreds of years now … But they are trying; I have to give that to them. But sometimes it takes me a while to get ready in the morning, because fatigue is fatigue. So it could take a long time to sort of unfold myself. I guess I'm describing a day that's not really that bad. This is how it would be if it was a day that wasn't that bad … I’d come home, I'd do the stuff I need to do, then I go to sleep. If it was the day that was bad, I just wouldn't go to work. It's just not possible. Because if you're sleeping 16 hours a day, I don't know how helpful you're going to be in the workplace.

So on a bad day, I guess I sleep a lot. I'm in a lot of pain. I'm in pain all the time, but some days are worse than others. So I guess, you said it … it does change a lot, because chronic illnesses are very unpredictable. They don't have a timeline.

They don't have any warning … Okay, in five days, we're going to flare up. That would be great, by the way, because I could plan my life around that … but they don't. So for example, if I was to go out with my mates, say to the pub, I know that day, I can't do anything. And probably the day before, I rest. And then the day after we've gone out, I’m resting all day. It’s got to be a a buffer of rest before and after — just for this couple of hours of going out. So I guess to sum up: It’s just a lot of planning where you can, even though it's unpredictable, and trying to give yourself the best environment possible. So that when you do have that flare, you have the best - the most comfortable opportunity to flare - if that makes sense.

Lauren: Absolutely. And I wanted to ask you how you balance the demands of work and life as well. Are you in a job now where they're understanding if you need to work from home on a given day? Are they aware you’re ill?

Jameisha: I’m in a job where they’re aware of my chronic illness. I work at the BBC. I joined on a scheme called Extend, which basically is a scheme for disabled journalists, invisible or visible or otherwise. It's a scheme that helps disabled journalists get into the BBC, because it can be very difficult when you have any kind of difference; that's what these schemes are for. And because it's a scheme for disabled people, they are more understanding about your needs, in being in the building. I had a needs assessment before I even started where … I don't know, I was really scared because my boss was on the line as was the needs assessor. And I thought I had to basically say, “I think I need this, and I think I need that …” I was terrified to explain what I go through. And the assessor said it for me. And it was a really great feeling, because I didn't have to ask for anything. She said, “Okay, you have fatigue. All right, well, travel is going to be difficult for you. So then I would say that you would need a taxi if you have to get to work early. Or you start at 10. I would also say that you can have a laptop that allows you to work from home on the days where you are able to work, but you're not physically able to get into work.” She was fantastic. And my boss was, like, "Yeah, that's fine. Yeah, sure, that’s cool.” So they are understanding. I had a flare maybe a month ago. And it was the first time I had to say, “Hey, guys, I'm not gonna be in for these next couple of days, I don't think, because I don't feel very well.” And they said, " Okay, cool.” And so I was able to work from home. It feels weird, because it's the first time I've ever been in a place like this. I've never been in an environment where they've understood, ever.

Lauren: What a wonderful scheme, and the fact that they’re so understanding. I just think that’s so exceptional.

Jameisha: It's overwhelming sometimes, thinking about it. Because in my previous job, I got fired. It's an actual juxtaposition. In my previous job I got fired because I have a chronic illness: the lupus. To go from a place where they fired you to a place where they put those adjustments in …

Lauren: With your old job, where you got fired because you had to miss work because you were chronically ill, was there any legal recourse you could take?

Jameisha: The next video I'm going to do … my friend’s editing it for me because he's a star! … That's what it's going to be about. I'm hoping to work with people to create some real change on this. Because it’s illegal, what they did. It’s 100% illegal. Maybe you know this already because you lived here for a while, but in the UK, when you're sick from work, you don't need a fitness note. You need a note, but after the eighth day you've been sick is when you would need to bring in a fitness note from your doctor to basically explain: This person is unfit for work and needs more time off. Anything in between that time, you don't need a note; you just tell your employer, “Hey, I'm not feeling very well. I'm so sorry. I'm feeling ill.” You don't need a note until the eighth day. In fact, usually if you ask for a note beforehand, your doctor will refuse, and say, “I don’t need to give you one.” That's how it works here; that’s the law. The policy of the company was that you just make a call and let them know you’re ill, which I did. But unfortunately, this company doesn't care — and a lot of companies just don't care. So, when I went to call my manager to say I wanted more time off, she basically said, “Oh, I didn't really know this until I contacted HR, but they’ve terminated your contract because you didn't bring a fitness note on the first day you were sick." I didn't argue with her because I didn't know the law; I didn't know what the rules were. So I just thought, 'Okay, fine.' I didn't like the job anyway, whatever. But when I told my mum, she said, “No, no, no, that’s illegal.” And my doctor said: “That’s illegal.” Everybody I've told said, they can't do that. Actually, you can get a case of work discrimination because of that. Here, you have to pass your probational period at work in order to sue for wrongful dismissal on most cases. However, disability discrimination voids that. You can work in a job for one day, and if they discriminate based on disability under the Equality Act, you can do something about it. But I'm not gonna lie. It was more me; the process is quite long because I spoke to ... I won't say a lawyer, but more like legal advice … we have free ones you can call up and ask about disability discrimination. And she said: “What condition do you have?” I said, “Lupus.”  And she told me that under the Equality Act, lupus is not one of the illnesses that counts as a disability upon diagnosis. So, upon diagnosis, if you have MS, AIDS, HIV, or cancer, as soon as you're diagnosed with that, you are a disabled person under the law of the UK. Now, that doesn't mean you're not disabled if you have lupus or any other illness. What it means is that, upon diagnosis — straight away — you're not considered a disabled person immediately. You kind of have to prove it; you have to have somebody agree that you are, because it impedes your life. Because I guess the argument is that one person with lupus may be more able than me. It can vary. So, I'd have to … what she was saying … go to a judge and have them say: Yes, your illness, under the Equality Act, is a disability. And then I'd be able to say: Because of my lupus, which is a disability because the judge said so, you discriminated against me. But what’s the response that you want from this though, what do you want to come out of this? You want your job back? No! I want money; you can pay me for that because you put me out of a job, and I don't have money and I have to support myself with a chronic illness. And it has a three-month limit. After three months, you cannot do anything about it.

Lauren: You’re not the first person I’ve spoken to who had a potential opportunity to take legal action, then decided not to. There's often that factor of emotional trauma — to relive your entire chronic illness history when going before the judge, and to relive the experience of being let go because of discrimination, and how awful that is. Having to go through all of that over and over again, for however long it drags out in the legal process, which could be years in some cases, a lot of people opt not to do anything because they think … well, it's actually going to cause me more stress than it's worth and I'm going to get sicker because of it.

Jameisha: Exactly. I didn’t want to go through that, even when my doctor was encouraging me to do it. It just wasn’t something I wanted to embark on. In hindsight, sometimes I wish I did, because of that company and companies in general, not just around disabilities but also because they mistreat their workers. But I don't think I ever wanted to have gone through all of that. My best friend worked there; we worked together at this horrible company. After I got fired, I told him. They never told the workers the reason why I wasn't there anymore. When other workers have been fired or let go, they would say, “Oh, so-and-so’s got a new job.” Or, “You can see we had to fire him because you could see he didn't come in, he was always late.” They would say if someone got fired because the reason was quite clear. Because mine was a health reason — and I worked hard … I did my job even though it was quite difficult for me — when I left, everyone kept asking my friend, “Where is she? Is she coming back?” He told them, “She got fired.” And they were, like, “No, she didn’t! What did she get fired for? She didn't do anything.” He had to tell them, because the manager just said, “Oh, she just decided that she wasn't going to come back.” Which was not the case. Even some of the workers I've seen on occasion at certain places, they’ve asked, “Wait, what happened to you?” And I’ve told them, “I got fired.” And they’ve asked, “For what? You haven't done anything. You just did the job and go home. You were always on time.”  So you know there's no reason to fire me. You know the reason was bad, but you can't even say it because it makes you look bad.

Lauren: It sounds like you have become an advocate not only for yourself, but for others who are living with chronic illness and disability. Can you tell us about how you started You Look Okay To Me … what inspired you … obviously your own experience … but everything that went into the creation of this website and advocacy platform?

Jameisha: I started it maybe after a year of Uni. I got diagnosed with lupus officially by the second doctor the same month I started university. I started late September, early October. And obviously I'm doing film, I wanted to be a cinematographer. I wanted to be a camerawoman and shoot films. And because of lupus, that proved to be something I couldn’t do at the moment, because it's a very physical job. Film is a very physical job in general; you’re standing for 16 hours a day. And I couldn't do some of those things. In the end, I was frustrated because I felt like everybody had kind of found their place, their niche in film, and were going on sets and being runners and having their start. And I wasn't able to so. That, mixed with speaking to other people I went to Uni with, and realizing that one of my friends has MS  — I didn't know because she doesn't talk about  — she had a walking stick and I didn't know why. And she told me, “Yeah, I have multiple sclerosis.” One of my other friends, he has Crohn's disease - life-threatening; he had to have surgery and almost died. And then, one of my closest friends recently was diagnosed with Crohn’s around the same time I was diagnosed with lupus.

So speaking to them and hearing their experiences, and hearing that we had many similarities and so did other people — that this wasn't something that was that rare, and that quite a lot of young people have illnesses.

All this made me think, 'Okay, I think maybe I want to set something up'. Because if there's enough people that are talking about this — and while we don't have the same illnesses, but we all have a similar story — I think there's something in that, and I think there's something that maybe we can raise awareness for. But in a way that I know how, which is visuals; I don't really know any other way to do it, unfortunately!

Lauren: Well, it’s so perfect for young people, because it's that perfect millennial niche. Your material is so appealing. I love going on your Instagram and seeing your videos. Which, by the way, for those of you listening, you probably know I post transcriptions of all my episodes on the website. But what I love about what Jameisha does is that she has transcriptions on her videos, as well. So they're totally accessible. And they feature you, and you've just got this lovely attitude and you're educating people; they're just really cleverly done. And everything is short and to the point, and I just think the content is so appealing. Even if you weren't chronically ill, you would probably be, like, “Oh, what's this thing?” And you would learn about it. So I think it's great.

Jameisha: Well, thank you. I get nervous about my content sometimes!

Lauren: Oh, no, it's just such a wonderful service for the chronic illness community. And also for the able-bodied community. People are learning about things outside of their experience, because they have accessible content and people like you are creating it.

Jameisha: I think that was the aim when making it, that was the bottom line.

Who is this content for? When you're making something, that is the first question. And it has to be two audiences. Because in order for you to have any kind of change, you have to speak to the able-bodied community as well as our own. I think it's great to have a space where we're able to talk and feel better, because that's important. But if we only are talking to ourselves, we won't be able to have the change in the world that we need, if able-bodied people are not listening as well.

Not all my videos are going to be for both parties. Sometimes, the video will be more for the chronic illness community, because that's what I wanted to make that day; sometimes they'll be more of an educational video that maybe people with chronic illnesses already know. It's kind of like, Oh, yeah, been there, done that. But a lot of the time, I try to have those two audiences in mind. I try to kind of hit that. And that's why the tone is that way … I wouldn't say that many people in the chronic illness community are like this, but it's very easy to be finger-waggy. And rightly so … I mean, come on, it's quite irritating sometimes to be in the situations we’re in. However, I think that can be a bit of a turnoff for people that don't know much about it. And so I wanted it to be a bit of an open space for learning, but also comfort.

Lauren: Yeah, definitely. I'm so glad that I found you. Jameisha and I kind of connected because of Instagram. I wrote you a note and said, “I love your Instagram!” And here we are on the podcast, talking about everything. It's just wonderful to make these connections and meet people who are in the advocacy space who are creating content that's for everyone … that level of inclusion and how important it is. Which is something that we experienced in the process of being diagnosed, in the process of living our daily lives — needing more inclusion. So you're really providing a platform for that and I just commend you for turning lemons into lemonade, truly. You got hit with these illnesses, and you didn't just rest on your laurels; you got up and you did something. And I think that’s really exceptional.

Jameisha: Well, thank you—  but I can say the same for you! Setting up this podcast. And also the fact that I wouldn't be doing this if it weren’t for the Internet; we wouldn't be sitting here talking. Say what you want … social media does have its disadvantages, as we all know, for certain reasons. But without Instagram, you and I probably would never have been sitting here chatting with each other and connecting. And I think it's great where we can both be connected by our stuff …you're making this podcast, we're connecting, having these conversations on other people's content. I just think that that is really important as well for us to connect, and talk, and exchange ideas, and support each other’s stuff. Because the more we do that together, then the more … no matter where it is, in your country, in my country, wherever … that stuff gets to the forefront a bit more. And I would say chronic illness is something we need to talk about more, and I would definitely think the Internet and people like us have something to do with that. Which I think is great. So let's hope that it continues, I guess.

Lauren: Yeah, we'll keep riding the wave, right! So we've covered so much today, and I usually wrap up my interviews with a couple of Top Three Lists — I like to do lists at the end of my episodes.  Can you give us your top three tips for anyone who suspects they may be on the cusp of entering this chronic/invisible illness world? What you would recommend to patients who are looking at a future that might be like ours?

Jameisha: It's a big one.

Number one … I always say this one … you know your body.

If you feel like there's something that's not quite right, even if maybe a doctor has passed you off, maybe they've said it's not that serious or, “I don't know, blah, blah, blah," get that second opinion. Maybe it's a third. Do that smart research online.  Don't Google your symptoms in a silly way; do smart research. If you really feel like there's something that's not quite right … you know, deep down, it’s not quite right … just keep going. It's very difficult.

It's emotionally draining and tiring, and can be so long. But it's worth it in the end, because at the end of the day, if you identify it, then you can address it.

I guess we’re working in a world where those waiting times are not so long. So keep going is number one, because I just think it's really important. I think, number two …

... your life is not necessarily over if you get diagnosed with something. It’s not done. It doesn't even mean that it's going to have to be the worst life; it means it might be a bit different.

And you might have to make some adjustments, but that's okay. And if adjustments are worthwhile and your life is still worth living, even with this chronic illness … it can be daunting thinking that you've got something potentially that's going to be with you for the rest of your life. I kind of don't see it that way as much anymore. I'm more just like, ‘I've got something that’s an impairment that needs to be treated and needs to be taken care of.’ It's easy to see it as a death sentence, but it doesn't necessarily have to be  — dependent on the illness, of course. And I guess maybe the third one is that ...

... if you get diagnosed, try not to compare yourself to who you were before you had a chronic illness. You're not necessarily different people, but you are now a version of yourself with a chronic illness. It doesn't mean that you're lesser than that person.

I was on this pursuit for trying to get back to Jameisha before lupus, Jameisha who could run and work out all the time and stand for long periods of time, and lift heavy things. I was, like, ‘Okay, yeah, if I just do duh, duh, duh, I can be Jameisha, that one.’ You're never going to be that person again. And that's for a variety of reasons, that's not just chronic illness … it’s because you're different. I'm sure you thought differently, and you did different things, and you liked different foods, and you had probably a different partner back then. And maybe you have a new one now.  I don't know. But you were a different person back then. And that's okay.

Don't strive to be that person again. I guess, strive to be the best person you can be now with that chronic illness. And that means giving yourself what you need, taking time, asking for help, being nice to yourself. That’s being the best person that you can be. And I think as long as you're focusing on those things, life gets a little easier when you are nice to yourself yourself and you start from that place.

Lauren: Yes, that compassion and empathy for others.

Jameisha: Exactly. It emanates afterwards. Because if you don't like yourself and you're struggling with that identity with chronic illness, how are you able to actually show love and affection to others, properly, in the way that you should? So, yeah, those would be my three tips.

Lauren: Well, those are gorgeous! And my last question is: I’m sure that you've had to make some adjustments in your lifestyle. Not eating toast and pasta, unless it's gluten-free! And changing the way you do physical activity. I'm wondering if you ever cheat on any of your lifestyle … what are your top three cheats or guilty pleasures ... or even comfort activities ... when you have a flare?

Jameisha: It’s very easy to say I cheat on the gluten-free thing, because it's fairly new. So maybe I'll start with that. I do sometimes cheat on the food thing. I'm still learning. So sometimes I eat something with gluten in it. Or like, fried chicken … oh, my God, my grandma, her fried chicken is something else! It’s really hard to say no to that. So I’d say that one, I love fried chicken! As a second one, I'd say maybe not on a flare … but this is one that is a bad habit of mine. I know that I should get the lift, but I go up the stairs because I feel like people are judging me from time to time. Not as much as I used to. I do it sometimes at work … they just don't think about it, they just go upstairs. And then I’m … ‘I could say it now, that I need the lift, but it’s just one flight.’ So I’ll do that, and I think that's something I need to stop. If you need the lift, you need the lift, and that’s it. So…on a flare …I’m trying to think what a secret indulgence might be?

Lauren: Yeah, like something you do for yourself.

Jameisha: I guess, it might be a cliché, but binge watching a series on Netflix. And then eating candy, because I love sweets. I've got a massive sweet tooth.

Lauren: Same! And that’s probably not the best thing when you have a chronic illness because everyone's like, “Probably the best diet for you doesn't involve sugar!” I can’t help it; I'm addicted! Do you have any favorite sweets or favorite TV shows that you like to binge on?

Jameisha: I love anime; I’m a big anime fan. And my favorite is one called Itzazura Na Kiss. It's, like, a soppy romantic one. I'm actually not a public display of affection, romantic type of person. For some reason, I just have this soft spot for romance anime! In this particular one, they meet in high school and they get married and have a kid. And when I'm having a bad time, that one I put on — just because it's so well packaged and well rounded and so brightly colored and … I don't know, it's just so nice! And I guess sweets wise  … maybe I'm betraying some Brits here, but I just feel Americans do candy so much better than we do.

Lauren: That’s so disappointing, because I prefer British sweets!

Jameisha: Not chocolate. I prefer our chocolate. But in terms of candy, I love Grapeheads and Cherryheads.

Lauren: Are those American??

Jameisha: Yeah, they are! When I visited New York, there was a corner store that had them. They're in this little box and they’re 25 cents. They’re so bad for you, I just know they are. When I left New York, I went to the corner shop and I think I filled a massive bag full of them, and the guy asked me, “Are you going home now?” And I told him, “Yeah, I’m only here for a while so I’ve got to stock up!” So those are my favorite, and maybe it's an East Coast thing? Sometimes I buy them on Amazon, in a crate. I shouldn’t even admit that!

Lauren: Is there anything else that you want to add about your experience, for listeners out there? And certainly, to let them know how to find your website!

Jameisha: Cool. I guess, maybe a last thought ...

… everyone experiences chronic illness differently.

So, sometimes when I was online, I would see someone else with lupus and they're going through, visibly, maybe a more difficult time that I am. They’re in hospital a lot more. And it sometimes makes you think you shouldn't complain, but just shut up because someone's going through a worse time than I am. Maybe they are … but you're also going through a difficult time. Everyone’s on their own journey. Just because someone might have a more severe form of it than you doesn't mean you don't have it, either. And you should be kind to yourself, and speak out; we all just experience it differently. Seeing all these different chronic illness people, you sometimes can compare yourself weirdly to them because … I'm not that sick. You've got your experience; we're all different and we all can learn from each other. So … the website is YouLookOkayToMe.com,  and all the socials are @YouLookOkayToMe, but the “okay” is O-K-A-Y, not the letters. Because I felt like some people would mis-say it.  You Look Ock!

Lauren: Jameisha, It has been such a pleasure to meet you and to interview you, and thank the interview gods for putting us together! I think this story is going to inspire so many of our listeners. So, thank you so much for joining us. And I would love to have you back again soon. Let's keep talking.

Jameisha: Thank you for the opportunity. It was lovely talking to you and meeting you, and I look forward to seeing more of the podcasts and the other episodes and other people that you have on. And keep doing what you're doing. It's great!

Lauren: Thank you. You too!


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