Chris Abdullahi is the founder of The Sound of Sickle, a non-profit organization that raises awareness of sickle cell diseases (SCD) and blood donations in the UK. He has spoken about sickle cell awareness on various platforms, including Google, Facebook, Guys and St. Thomas’ Hospital, and the BBC, and works closely with the NHS Blood Donations team to curate events and sign up new black blood donors. He also lives with hemoglobin SS disease, the most common and severe type of sickle cell — which means he inherited copies of the hemoglobin S gene from both of his parents. In this interview, he sat down with Lauren shortly after coming out of a ‘crisis’, which is the term used to describe the bouts of intense pain that those living with SCD can often experience. They discuss the importance of raising awareness of SCD outside the community, what living with SCD means to him, and how he manages his symptoms on a daily basis.
Key links mentioned in this episode:
Tune in as Chris shares…
- what SCD is
- that he was diagnosed with SCD when he was a toddler
- that while SCD is prevalent in Afro-Caribbean communities, there are also instances of it occurring in Hispanic & Asian communities, as well as rare cases in white communities
- that the biggest challenge in treating SCD is in getting blood donations
- how a crisis can manifest in SCD patients — that pain usually ensues when clots are present, caused by sickled blood cells
- what crisis triggers can look like
- that many SCD patients get regular blood transfusions as a preventive measure to avoid crisis
- that SCD is a lifelong chronic condition — patients cannot “grow out of it”
- that he didn’t meet many other SCD patients until he was in his 20s
- the mental health side of managing chronic illness like SCD
- the cultural side of managing chronic illness like SCD
- why he holds back from revealing his condition at work, and how he manages symptoms with his work schedule
- that sickle cell diseases have just been classified as a disability in the UK
- about his work in creating The Sound of Sickle
- that in the UK, black blood donors make up only 3% of the donation base
- why he won’t use stem cell treatments to cure his SCD
- why his friends are so important to his health
- his parting words: “Donate blood!”
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Lauren: Okay guys, thank you so much for joining us. I am here today with Chris Abdullahi who’s the founder of The Sound of Sickle, which is an amazing organization based in the UK. It’s all about advocating for sickle cell patients and their loved ones. So Chris, thank you so much for joining us.
Chris: Thank you for being here and inviting me!
Lauren: Total pleasure. And I’m so glad this worked out, because actually, you just had a pretty long stay in hospital —one of your longest in a very long time. You’re well now, which is great news. But why don’t we go back to the beginning of your story? Can you tell us how and when you first realized you were sick, and what you’ve done to maintain control over your health?
Chris: So I was diagnosed with sickle cell when I was three years old.
Lauren: Did you know that there was already a genetic link in your family?
Chris: So my mum, funnily enough, she knew but she didn’t really kind of pay too much attention to it. I guess in that generation, it was more about surviving than anything else, than thinking about long-term effects on children and stuff like that.
I don’t even think there was as much awareness or conversation around it in her generation.
So there’s multiple reasons.
Lauren: So part of what you’re doing is bringing awareness.
Chris: For me, that’s a very important thing. It’s more the awareness than anything else. I think cures are always going to be found, and prevention is better than the cure, in my opinion.
Lauren: Interesting. Okay, so we’re going to talk about that in a minute. So you were diagnosed at 3. Did you get diagnosed because you went through a crisis?
Chris: A lot of children when they’re first diagnosed, they have a crisis — but not a full crisis. So, a lot of the time they’re diagnosed because there’s pain, but they can’t really pinpoint the pain. There’s inflamed and over-swollen joints, and they don’t really know why. They do blood tests and everything, and they’re not really sure. There are issues, but they don’t really know causes for it. They did a genome hemoglobin test on me, and that’s when they found out I had sickle cell. Okay, well, this was quite significant. It’s a long-term condition. I think now, kids born post 2000 or maybe post 1999, are tested right off the back. So any child born in the UK is tested to see if they have sickle cell or any of the other rare blood disorders.
Lauren: Is this regardless of race, all children are tested?
Chris: All children.
Lauren: Wow, that’s great. And this is a disease that is prevalent largely in Afro-Caribbean cultures.
Chris: Yeah, Afro-Caribbean culture, but there are instances of it being found in Hispanic communities, in the Asian communities. There’s also cases where it’s been found in white communities as well. That’s far and few between, but there are cases where it does happen.
Lauren: Well, in case white people are looking for a reason to give a damn, that’s a great reason! Aside from the fact that you should care about other people!
That’s the hardest part … to get people to donate blood in general.
When I was in hospital recently, I had my second-ever blood transfusion. The first one was when I had my first and only operation.
Lauren: And the transfusions are what keep things under control when you’re in crisis?
Chris: Yeah, so generally it’s to refresh your blood. So people who have sickle cell have a lot of sickle blood cells and it affects their hemoglobin. So what the blood transfusion aims to do is to refresh the blood — to remove, obviously, all the sickle bloods then slowly integrate the non-sickle bloods and find a way to balance the hemoglobin levels.
Lauren: So tell us a little bit about what sickle cell looks like. Because we’re talking about words like crisis and the sickle cells. Can you like give us a little background on what sickle cell is?
Chris: Cool. Quick crash course in sickle cell … it’s a genetic blood disorder that can be only be passed down from parents. So it’s not something that can be transmitted from blood to blood contact or anything like that. It’s when one parent has the sickle trait, or full-blown sickle cell gene, which is a deformity in the hemoglobin … which forces the red blood cells, which are generally donut-shaped, to become sickle shaped, like a crescent. And that causes, obviously, a knock-on effect, so it can cause clotting … and when the clotting happens, it leads to pain bouts — which are often referred to as a crisis. These tend to happen in joints or places where capillaries or blood vessels are really thin and small to pass through. Those are the main triggers. Obviously there are general knock-on effects from that, and as you can imagine, there’s a chance you can have a stroke at a very young age because the heart is still developing. There are chances of deterioration in the eyes because the back of the eyes sickle, and that equals long-term pain. There are chances of a generally weaker immune system, because your red blood cells break down much quicker. And your white blood cells are generally always on high alert. So it’s like a backhanded thing in the sense that sometimes you may be perfectly normal, but sometimes you won’t. So it’s literally treat every day as it comes. And that’s exactly what happened with me and how I deal with my sickle cell. A lot of it is dealing with the mental side of things.
And I think that’s what many people maybe haven’t realized, that with sickle cell how, mentally, you’re impacted.
It generally tends to affect your internal body; and that happens with everything. It’s worse with sickle cell because any slight variation in your body can lead to anything else, and those knock-on effects cause all kinds of kerfuffle.
Lauren: So the the actual triggers themselves can be a wide-ranging array of various stimuli, from mental health issues all the way to outside physical stimulus as well.
Chris: Yeah, so you can have a crisis from being too hot, being too cold, from catching a common cold, being in bed for so long, from not being active, from losing a lot of weight, from gaining a lot of weight. It sounds like you have to fit everything around us in a blanket.
Lauren: Yeah, it’s like boy in the bubble, right?
Chris: Yeah, exactly. It sounds like that. But it’s part of life and I think once you have sickle cell, there are certain things you need to modify in general. So generally, I don’t go swimming, because getting cold and not be able to heat myself up quick enough leads to a crisis. And being too hot, if I don’t drink enough water, I don’t fill up my blood and suddenly my blood is thicker and clotting; I’ll have a problem, I’ll have a crisis. There are a lot of different ways that everyone looks after themselves, I think. I’m one of the worst examples of looking after myself, so I don’t promote myself as the best advocate for ‘look after my sickle cell’. But it does show the spectrum of sickle cell in a sense … some people I know have blood transfusions every two weeks; some will have them every month.
Lauren: Is this as a preventive thing, or just when they’re in crisis?
Chris: This is a preventative. I’ve had just two blood transfusions in my entire life. One was this recent admission. And the other time was when I had surgery. That’s the entire spectrum. Some have them regularly. And there’s me that has it irregularly.
Lauren: And do you think it’s also because you’re younger right now and you’re quicker to bounce back? That maybe your immune system is a little stronger in general, that maybe in a decade, it might be different?
I think it’s weird in the sense that a lot of articles have referenced that and said that generally you “grow out of” sickle cell.
Lauren: Really? People have said that?
Chris: Yeah, there are articles that say the older you get, the less the sickle becomes prevalent in your body.
Lauren: Sounds a little bullsh*t to me!
Chris: Yeah, it is!
Lauren: Let’s call a spade a spade. That doesn’t sound accurate. Sickle cell doesn’t just go away.
Chris: Yeah, you don’t just grow out of it. It’s not like shoes or clothing. So I’ve just gotta leave that alone. No, it’s not like that. It’s really weird. There are articles that have said that. But I think there is some element of truth behind it in the sense that I think it comes from the mental side of things and more control of your body. And the older you get, the more you understand your body, so you know what triggers you and what sets you off and sets you down the wrong path.
Lauren: That’s true. So it’s really just that you gain more awareness and acceptance of your body as you get older.
Chris: You just become smarter, I think; it’s as simple as that.
Lauren: Yeah, absolutely. And I love that you’re addressing the mental health side of this, because I think it’s something that isn’t often addressed in any chronic illness circle. And, mental illness is included in this invisible and chronic illness circle. Mental health can have such a huge impact on how your body responds. And that that’s a part of what you guys are trying to do with The Sound of Sickle is super exciting. So we know that you were just in crisis and it was a long stay in the hospital. When we say crisis, it’s kind of like saying a flare, isn’t it, for people who understand that language as well. So when you’re in situations like that, have you learned to become your own advocate? Or do you lean on others around you for for help, both emotionally and physically when you’re going through crisis?
Chris: I think now I’ve learned to. And I think when I was younger … in secondary school, although probably up until university … and it’s probably because I didn’t know many people with sickle cell like me.
So when I was growing up, until I was 21 roughly, I met about three people with sickle cell.
Lauren: Wow, so not many.
Chris: Yes. I mean, it’s rare in itself. And then obviously, it’s limited, or highly prevalent, in one particular community. So, there’s a conversation around that. And then obviously, there’s a lot of parents with cultural things … you deal with things with religion first, and you deal with home first. And that plays an aspect into people not talking about it as much. So when you do have this conversation when you’re growing up, you’re not really saying, “I have sickle cell” as a first conversation.
Lauren: Yeah, “I am Chris. I have sickle cell.” Right.
Chris: Maybe I have met people I when I was growing up that had sickle cell, but I never knew. So I dealt with it a lot by myself. And your parents are going to do their best and say, “We’re going to look after you. Don’t worry about it, you’re strong” … and everything a parent should say. But it’s hard when you can’t relate to anybody directly about what you’re going through. You can’t have a candid conversation and say, “Look, I feel like crap today, and I can’t walk and my back hurts and I can’t breathe that much …” and whatever’s going on with your body. You can’t have a conversation like that with someone who goes hospital once every 24 years for example, and that’s because they’ve stubbed their toe. So it’s an odd balance, but it’s a balance that I think you get. And I think growing up, I learned to rely on my friends more because I didn’t have those groups when I was younger.
You deal with so much alone; you stay in your head and that causes you to flare up a lot more.
When you start speaking about things and speaking about how you feel, you start to feel like a weight lifted. A problem shared is a problem solved, or halved a problem.
Lauren: Yeah, so it sounds like you were able to rely on your family up until a certain point when you really needed community.
Chris: Yeah, I think that’s what led me to get to where I am with The Sound of Sickle, and in general, to be more of an advocate about it, I think. I started to have little interactions and to think about being an advocate a bit more when I started going to Guy’s Hospital and my doctor’s hospital.
Lauren: This is one of the major hospitals in London, for those who are listening.
Chris: And they said, “Chris, come and speak at our transition clinic. You’ve been through sickle cell; you’ve been through the pediatric ward, you’ve made it through to the adults’ ward. You’re surviving; you haven’t been in hospital that much. It’s always great to hear a positive story.” That’s when I met the third person with sickle cell, who ended up coming to my university. And we had a conversation. Again, like I said, I’m a terrible advocate for looking after yourself with sickle cell.
Lauren: Yeah, but by the same token, what you said to me before we started this interview was, like, “I might as well live my life on a certain level, too.” You say you’re not good at taking care of yourself. But also, if you don’t allow yourself to have experiences, then are you also holding back in life, and is that going to affect you mentally, too?
Chris: I think that’s the kind of the mentality I’ve adopted, you know…
I’m here for a good time, not a long time. Let me relish every moment.
I’m gonna get ill, regardless of what happens. I might flare up, regardless of what happens.
Lauren: And you might not, too. You can’t tell whether you will or won’t until it happens.
Chris: I think everything’s a calculated risk, especially with me. You weigh up the pros and cons and say … right, is this going to greatly impact you, or is it greatly going to trigger your sickle cell? And I say no a lot of the time, so I just continue living and having fun. So I speak at this transition clinic, and I met this young lady, and she was, like, “Oh my God, how you dealing with university, you know, not being around family … having sickle cell and partying and fitting in?” All these kinds of pressures that come with being an adult and I’m trying to be in Uni. And it was the first time, actually, I sat there and thought, How do I do it? And I just said, “I just try to live my life. I can’t advise you to do this and do that — because there’s not a one-size-fits-all for anybody with sickle cell. You know your body, you know how you live. So you know what your triggers are. So adapt and live the best life you can around those triggers.” And I think I was positive to her, because she was worried about going to Uni and then finding friends and suddenly being in hospital every other week. I said, “Look, if you find yourself in that situation, message me and I’ll make myself available. I’ll visit you in hospital, I’ll come and check on you … if you’re on campus or whatever the situation is, I’ll make myself available.” And I think that was the start of me doing a lot more advocacy work. Actually that felt good to have a conversation with someone who’s younger than me, who’s looking towards what I’m going through. I’m there and I’ve experienced it and lived it. And I said, actually, wait, this is great, it’s fine. This is positive. So it was a great experience to start there, and then I just started to go on a bit more. And my social media account … I never used to Tweet about how I have sickle cell, but then it was … right, if I’m going to claim to be an advocate, I’ve got to let people know that I’m in hospital. I’ve got to speak out about it a bit more. Because people you know just see you going about your business. And they’ll think you’re great. They’ll see your Instagram posts and think, Oh, he’s living life.
Lauren: They only see the good side. It’s a filtered view.
Chris: Exactly that. Once you start to remove that a little bit and give people an actual insight into how you are feeling … and even to be, like, “Oh my God, I woke up and I can’t walk. My back is in pain … or blah blah blah blah blah … “ people are like, Oh my God, what’s going on with you?
You realize that people are noting this and caring, people want to find out more.
That’s what really made me realize … actually, maybe I should just do this regularly and do something about it. And then that led into The Sound of Sickle.
Lauren: So it sounds like you started seeking community, or in fact community kind of found you … and you, accidentally, like so many of us, ended up becoming an advocate because you wanted community, too. And you responded to it, which is really amazing. We’re going to get more into that in a little bit. But I’m wondering what a typical day looks like for you, how you’re balancing work and life and managing your triggers as you go on with your day. What does that look like for you specifically?
Chris: It’s a weird one again, because I live my life to the fullest. What I do know is that being cold and being severely cold is one of the things that ruins my body.
Lauren: And you’re still living in London? Why haven’t you moved to a tropical island yet?! (laughs)
Chris: London’s actually a nice place, outside of the cold!
Lauren: Well, yeah, right now it’s really cold over there, I’m sure.
Chris: And I think, you know, you deal with that. I think inside London’s okay. It’s when I start going to Bolton and places like that that I realize, bloody hell, this place is absolutely freezing cold. I don’t know how people live here. And when you watch the news and London’s 15 degrees, and Bolton or Leeds is 7.
Lauren: And this is in Celsius! Significantly different than what everyone’s thinking if they’re listening in the US.
Chris: Oh, you guys do Fahrenheit.
Lauren: Yeah, it’s totally different. And we don’t do the metric system; we do miles, not kilometers. It’s so different. We’re the only ones who do it, too. We’re backwards in a lot of ways, Chris! So you try to avoid the cold.
Chris: Yeah, cold is the number one thing. If I open my wardrobe, there’s a plethora of jackets of every kind – puffy jackets, to long puffy jackets, to bomber jackets, to everything that keeps me warm and everything in between. Super warm, super cold, whatever. I have jackets for every kind of weather. Being cold is always bad. Being hot is fine; I can manage that because I just need to drink a lot more water. But being cold, if I don’t manage my temperature properly, I’m absolutely screwed.
Cold seeps into my body, gets into my joints …
and suddenly, I have a crisis in my elbow, and I can’t write for a day or two. That’s like the worst-case scenario.
Lauren: One of the things we touched on, and this is sort of part of that question … and this is something we were talking about before we started the interview, again … this whole Boomer Millennial generational tug-of-war … that there is this perception that Millennials and younger generations are lazy because they want the work they do to have an impact. The perspective is yes, we want to have an impact, but the system that’s been cultivated for us by previous generations isn’t working for all of our bodies. Because so many of us are dealing more and more with chronic illness. I’m wondering if your work/life balance has also come into play here. I know you were talking about changing things up at work, too, and how you’ve had to address that as you manage symptoms.
Chris: Luckily, most of the places I’ve worked have been accommodating. I don’t go in and say, “Hi, I have sickle cell” right off the bat. Because, again, I think it’s just not me. And there’s also a slight thing that I don’t really want to be judged before I need to be judged.
Lauren: And you’re not required to give that kind of information until you’re actually …
Chris: Until they require it. That’s fine for me, and again, I seldom tell people that I’ve got sickle cell at work — until I’m ill. Most of the time, if I’ve got a pain, I say I’ve got “a pain”. Work, I’ve done sales, I’ve done advertising. I’m still in advertising. First role, luckily I wasn’t ill once. Second role, I had plantar fasciitis — flat foot — which is a knock-on which wasn’t necessarily sickle cell-related, but I think it came about from my sickle cell. Which meant my foot was basically flat. Normally, your foot will have a small arch at least. I had to have steroid injections in my foot, and I was on and off crutches for the best part of two-and-a-half months.
Lauren: Do you think that there is something about the visibility factor, when you’re using a mobility aid, that makes it easier to explain to people, like, “Oh, I’ve had surgery,” That you can sort of get away with it more?
Chris: Yeah, I was on crutches for most of the last week, and I’m still -ish on crutches.
Lauren: Yeah, I can see you’ve got your crutches behind you. On hand.
Chris: Yeah, just in case something happens. But this time I got admitted, I’d been off two weeks, and my line manager was checking in on me. Which was great, he’s been fairly supportive, relatively supportive. He’s been very accommodating. But this is the longest time I’ve been in hospital, so it was really, like, oh my God to them … two weeks out, there must be something severely wrong to be in hospital for two weeks. And I came back, and then I had sciatica, because I’d be in hospital for so long and I’d lost so much weight. I’m six foot two, and the beds are built for maybe five foot 10.
Lauren: So you were hanging off the edge of the bed, getting sciatica!
Chris: I was in the fetal position, which isn’t the most comfortable for me, because I normally sleep in a weird, like running position. If you think of the image of someone running, like a flat image, that’s the position I sleep in.
Lauren: So good luck to anyone who tries to share a bed with you, is what you’re saying!
Chris: Yeah, and I’ve learned to accommodate that! But honestly, sleeping alone is the best thing because I can sleep across my whole bed.
Lauren: It’s your version of a spread eagle, yeah!
Chris: Exactly, it’s the best thing. So I’ve kind of learned to deal with that.
Lauren: But yeah, so the hospital beds weren’t really built for your comfort in that way.
Chris: They’re single beds, and you know, once you get old enough, a single bed should not be here for anybody.
Lauren: But I suppose what it does in hospitals is creates more room.
Chris: Yeah. And I’m grateful for that because then they have the one chair for whoever’s there as a mainstay, but there’s space for lots of little chairs around it, which is great. But I think it’s just absolutely annoying.
Lauren: So, basically, what happened is that you ended up with additional symptoms after the stay that weren’t maybe as bad as the crisis itself, but are ongoing pain issues that you’re having to manage?
Normally I’ll get discharged and I have a couple of days off and I’m back into work, ready and raring to go. No, not this time.
I don’t want to go into work until I feel comfortable because I feel like I’m useless. But also the fact that I handed in my note due to health reasons … I think the more work gives to you, the more you want to give back to them. And I think the last two jobs I’ve had, they’ve given to me so I want to try my best to go into work because I like the people I work with. I don’t want them handling my workload for no reason. It’s not that I like working, but I like being at work. It’s just nice, part of a routine. You get into a nice routine of socializing people outside of your own household or immediate friendship groups. And it’s nice. So the first day I was in, I was on crutches and everyone was, like, “This is serious. He’s on crutches. Oh, my God.” And everyone was, like, “Oh, Chris, do you want me to do this? Do you want me to do that?” Yeah, I don’t really want you to because I don’t want to feel like I’m ill. I know people are asking to help out of the kindness of their hearts, and I’m gently rejecting that out of the stubbornness of my own heart.
Lauren: A bit of pride at play there, yeah.
Chris: And I’m, like, “I’ve got this. Don’t worry about it.”
Lauren: Well, that’s a part of mental health approach, too … how much do we have to put our ego and our pride aside in order to actually accept help when people are offering it? And conversely, are people even going to offer help if you’re not walking around on crutches, if they can’t see it? Do they know to offer help? So I think it can get very sticky and complicated in those situations.
Chris: When I know that I’m severely ill, I’d rather stay at home because then I’m not going to require any of those additional conversations or have to manage those weird situations.
Lauren: It’s that extra stress.
Chris: Yeah, because they’re always weird. And people are always weird.
There’s always this kind of…How much do I tell you?
How much do you want to know? How much do you actually care about? Do you care?
Lauren: Well, especially at work where it’s a professional relationship, too, and it’s not like your friends. So, this means that you’ve actually taken a step back from work now, following your crisis, right? Because you’ve realized that you needed to give yourself some more time to recover and take care of yourself, right?
Chris: So I finish work next Friday coming. I just had the month off to recover. And I think I need that, because I felt my body running down. I think the older you get, the more you sense your body, the more you’re in tune with all kinds of aspects of your body — the little tweaks, little stresses, the little niggles that have remained there for longer than a week, a day, a month … that tell you, actually, this might be a long-term problem. It’s not debilitating or stopping me from moving. But it’s a niggling problem I could feel in the background. When you have sickle cell, you tend to develop a high pain threshold. Because you’re in pain so frequently, it’s like, well, I’m in so much pain; this is nothing to me now.
Lauren: Over here, I hear stories, especially from women of color, who’ve gone through various things like endometriosis and other kinds of illnesses. There’s this misconception that people of color have a higher pain tolerance, just because. Which we know is BS. But do you think that things like sickle cell, where you’re developing a higher pain threshold because you’re dealing with it more often, that there’s some perception, that this is sort of adding to this misconception that people of color can take more pain?
Chris: I think it’s two-fold.
I think there’s this cultural thing in the sense that you are taught to be strong.
I remember my parents, my mom, was, like, “You’re strong, strong, strong.” Even as a man. “You are strong, you will be strong, you’re independent, no one’s going to fend for you other than your family.” There’s a lot of that narrative going around. And from that, you become mentally strong in some aspects. But then you start to deal with stuff and to take things in your stride. And taking things in your stride is where the double-edged sword comes from. Yes, it’s great that you can take and handle those pains. But sometimes that pain is too severe, and because you’ve developed that ‘I can do it, just take it on the chin’ attitude, you start to ignore the conditions and the effect that’s happening in your body in the long-term … And because again, you are taking things on the chin and just riding through pain, and you’re saying to your co-workers, “Oh, don’t worry, I’m fine. My back hurts a little bit, but I’m okay.” And they’re, like, “All right, fine.”
Lauren: If it were them, they’d be laid up.
Chris: Yeah, exactly that. And there are a lot of times I’ve come into work when I’ve been in pain and I’ve said, I’ll deal with it. You get in and you tell your line manager, “I’m in a bit of pain. So I might be a bit slow today”. And I remember I got told recently that if you call in sick, assume that you’re too sick to work at all. So calling in sick and then trying to work from home doesn’t work.
Lauren: Oh, interesting.
Chris: Yeah. Because you’re too sick to be in work. So you shouldn’t really be working.
Lauren: That’s interesting, because over here, there are more and more companies that are offering sort of unlimited holiday, in the sense that you can work from home and it gives you more flexibility — provided the security of your company is well done. There are more and more people who are doing that to create flexibility for themselves, and that in turn is creating flexibility for people who live with chronic illness and other needs. But it sounds like that’s not necessarily the case in the UK, or at least not where you are working.
Chris: I think, unfortunately, the world that I’m in, client services, there’s a lot of face-to-face, not a lot of calling or emailing. So it requires me to be in office more often than not. To a degree, directors (managers) can work from home. But that’s because they would have, obviously, people underneath them that would be able to manage the workload of the face-to-face conversations.
Lauren: So it sounds like when you’ve used a mobility aid, people have readily offered you help and understood that something was up. But have you found yourself in situations where you’ve been confronted by people, and forced to justify the fact that you were dealing with something invisible that was causing you pain that they couldn’t see?
Chris: I think when I had my first bouts of illness where I’m working now, it was an odd conversation to have in the sense that I don’t expect many people to know about sickle cell, less so in that kind of a professional environment. So the first time I was ill and I think I went straight to the hospital, it was the morning that I was meant to be in work; I’d been rushed to A&E (the ER) and I was in hospital and I hadn’t called in, because I couldn’t. At that moment it’s pain management first, rather than oh, sugar, let me, you know, text my line manager to say I’m not going to be in because I’m in hospital. So I think when I first came back, it was, “It’s an unauthorized absence. You were ill or you didn’t come in and you didn’t let us know. Why didn’t you come in? Why didn’t you tell anybody you were ill?” It happened over Christmas as well; I didn’t know I was meant to be working.
So I didn’t tell anybody that I was in hospital for two days. It wasn’t overnight. So that was one I had to justify.
My MD didn’t necessarily believe me.
Lauren: Really? Your MD?
Chris: Yeah. To some degree I understand her reasoning behind it, but to me It felt a bit offensive. I didn’t know I was meant to be working, one. Sorry, I apologize for that. But two, I was in hospital, and even now I don’t feel that great …
Lauren: Oh, when you say MD, you mean Managing Director! I thought you meant your doctor! So it wasn’t your doctor not believing you, it was your managing director not believing you. Which is pretty bad because when you’re at that point when you’re saying you don’t believe someone who has a legitimate illness — whether or not you know about it — that’s kind of discriminatory behavior.
Chris: Again, I get her reason. I didn’t think she meant it from a place of malice. Post-Christmas, people are meant to be back. I hadn’t been back, I’d been in hospital, didn’t tell anybody. And then when I came back, I looked out of it because I’d been ill. So when we had the conversation, it sounded like I wasn’t remorseful — because I was ill, it was more like pain management. “Oh, I didn’t I was meant to be in, and I was in hospital.” She was, like, “You’re chancing it, basically; you’ve tried your luck by not coming in.”
Lauren: Was that the point at which you actually had to tell them that you have sickle cell?
Chris: Well, before that I told them I had sickle cell. I told my MD. There had been days where I hadn’t been in because of my sickle cell. I would assume that conversation had been had.
Lauren: But at that point, it’s also up to the company to be informing people who are in managerial positions so that they know not to discriminate against their employees.
Chris: That one for me, was a bit distasteful.
Lauren: Well, I’m wondering if you’ve also experienced any either privilege or undue prejudice within the medical system or otherwise. Particularly regarding self-identity, because you identify as like a cis man of color, right? Is that something where you’ve had to do extra explaining because of the way that you present, or that if you presented differently, maybe people would believe you more or less?
Chris: It’s funny because I remember my mum taught me this, and it was a weird one in the sense that Mum said to me, “When you get into an ambulance, always cry.”
Lauren: So they’ll take your pain seriously,
Chris: Yeah, because when I’m in pain, I’m so good at managing it. I try to distract myself. I’m always smiling. I’m trying to make jokes. I’m trying to talk normally.
So people assume that … he’s smiling, he’s happy. Why is he here in A&E, why has he been in an ambulance?
It happened a lot when I was younger, because when you’re younger, no one really believes anything because you’re a child. It’s happened a few times when I’ve been older … “You’re fine. You look fine. You don’t have a washed-out color.” On those days when you don’t look drowsy or days when you don’t look physically weak. And again, it’s because as a male, when they see you cry, or when they see you show this emotion, that’s when they’re more taken back. Because again, there’s this stereotype or this belief that men are strong in every aspect. So when you’re a man, and you (grimace), that’s the most you’ll get from a man. So when you see a guy get to the hospital and he’s crying his eyes out … whoa, there must be something wrong here.
Lauren: It’s interesting that you’ve had to learn to manipulate other people’s perceptions in order to be taken seriously — and from the word go, it sounds like.
Chris: Yeah, because sickle cell originally, and especially when I was young, wasn’t documented or known. A lot of the conversation was, like, “Okay, so what do you need?” The question came back to you, but I was, like, “You’re the medical professional.”
Lauren: In your medical experiences within the NHS in the UK, in what ways have they been positive, and in what ways does the system need improvement?
Chris: I think largely they’ve been positive. I think I seldom have had a bad experience in hospital. Again maybe because I’m not in hospital as frequently as others. I’m lucky that when I do go in … at Guy’s Hospital, they were so amazing. They know the protocols, they know the drill for someone with sickle cell. They’re, like, “Okay, let’s give him morphine.” Or often manage the pain until they find out what the actual issue is, or the underlying issue. So there are certain times I’ve had negative responses. But from people that I’ve spoken to around me, and because sickle cell is such a rare disease, a rare condition …
Lauren: Is it categorized as a rare condition?
Chris: It’s just about been classed as a disability for personal independent payments. And even if you apply that for sickle cell, you’ve got to push it beyond belief to to prove it.
Lauren: You have too prove you’re in the hospital a lot more than you are, probably.
Chris: Even now you’ve got to go beyond that. When you have assessments, when they come to your house, you’ve got to look physically ill at that point in time. And with sickle cell, like right now having this conversation, I’m great, I’m swell.
But this last week or two weeks ago, we wouldn’t have had this conversation because I could only just open my eyes, I could only just eat.
Lauren: It was actually quite interesting, because you and I were emailing over that time and explaining our mental health struggles to each other. From your hospital bed, you were, like, “I’m like in a dip right now.” And I was having my own dip … obviously not related to sickle cell.
Chris: Everyone has those dips, regardless of what happens. Work, career, life … whatever happens, no one is going to be 100% all the time. We’re not machines, we’re not meant to be 100% all the time.
Lauren: And that’s also how sickle cell works. You’re going to have times when you’re good, and times when you’re bad. And to be “assessed” with the assumption that you have to be bad all the time isn’t going to help you.
Chris: Exactly that. There are times when people have assessments and they’re fit as a fiddle. They can lift weights, they can go to the gym. And then come back tomorrow and that person’s on crutches.
So when they do these assessments, it’s hard to have the condition just ready to go.
Lauren: Yeah, absolutely. Because it’s not something you can just call up when you want. And who wants to call it up anyway, because you don’t want to feel that way.
Chris: Exactly. And it’s hard to fake.
Lauren: And the pressure that you even have to fake it in order to be taken seriously in that regard is kind of insane.
Chris: Exactly. There are such stringent rules, and unless you’re seen to be physically and indivisibly disabled, you wouldn’t qualify for it. And that’s the biggest struggle that a lot of us with sickle cell in Britain are having, for something that’s meant to help us.
Lauren: For disability insurance, yeah. And then you’re not getting help when you need it.
Chris: Yeah. So it’s a bitter pill to swallow. But again, sometimes we try to help people with that, especially at The Sound of Sickle. We’ve met someone at the NHS that helps fill out these forms. Even amongst the group, there are people with sickle cell … they’ve done these assessments and they now put together these packs for other people with sickle cell to help them get better at it, and help them fill in those forms and get the right support they need throughout the course of the application.
Lauren: So let’s talk more about The Sound of Sickle. We know that it was born out of your conversations with people who came up to you while you were helping out at the hospital, and speaking to physicians there, and everything. Tell us about the work that you do with The Sound of Sickle. I know there’s a big push to get more black blood donors, and that’s your biggest thing right now. Tell us all about it.
Sound of Sickle is my baby. I think legacy is a big thing for me.
I want my legacy to be, when all is said and done, this is what The Sound of Sickle is and this is what is done by these people. So Sound of Sickle is three things; there are three things I want to achieve. To increase awareness amongst black people around sickle cell. And I say black people because they are primarily affected; they’re the main people who are going to be suffering from this, to be impacted by it.
So to educate them first and foremost, and get them thinking about it as a long-term condition, as a long-term illness. And then, two, it’s to increase black blood donors —because in the UK, black blood donors make up 3% of the overall donor base.
Lauren: Wow, it’s very low, isn’t it. And why, specifically, black blood donors?
Chris: Blood donation is really weird in the sense that every ethnicity, every kind of group, has more genomes that are prevalent in that blood group.
Lauren: And that are similar.
Chris: Yeah, that are similar. So, people who are black or have black heritage have the Ro gene, which is more prevalent in this. Whereas, Asian ethnics have a gene which is slightly different, but again, more prevalent in those kind of communities. So every group has different blood groups which are prevalent amongst them and relative to them.
Lauren: And this means that if you find a donor who’s genetically closer to your blood type, the blood will transfuse better, and take in your system better?
Chris: Yeah, it would match better. And some of these Ro genes will have positive impacts on your blood, some that you may be lacking internally that someone else has that won’t necessarily attack your blood and your white blood cells, won’t think of them as intruders.
Lauren: So if I give you my blood, it wouldn’t work as well, essentially.
Chris: It works fine. But this is going above and beyond.
When you match closely, it’s above and beyond that always works better.
You can get like an A-plus service … and you can get a triple A-plus service, essentially. And it’s the triple A-plus service that everyone’s looking for.
Lauren: And then you’re also educating about all different types of sickle cell. So can you talk us through the different kinds of sickle cell that exist —because it’s not just sickle cell anemia. It’s not just the one thing.
Chris: I didn’t know this until I went to one of these meetings and I had this conversation. There are so many different subgroups and variations of sickle cell; many of them just aren’t known about. There’s sickle cell-beta thalassemia which is a variation of sickle cell and the thalassemia gene combined together. Again, it’s still a branch of sickle cell, but it’s different. Then there’s SS, which is sickle cell disease. And then sickle SC, which is sickle cell anemia, which is slightly different. SS is seen as more severe.
Lauren: And you’ve got SS, right.
Chris: Yes. SC is less severe. But again, there are still impacts from that.
Lauren: The idea here is that there are a lot more different kinds. Just having sickle cell isn’t the end of the conversation.
Chris: Yeah, and we’re trying to educate people on genome types. Everyone knows their blood type, and everyone’s, like, “Well, my blood type is O positive or A negative” … or whatever. I know that I am O positive. And I have sickle cell. The difference is the genome.
Lauren: Is it typical for people to be getting tested for their genome type when they’re getting blood tests?
Chris: No, when you get a blood test, you’re just tested for your blood type.
Lauren: So if you want to know your genome type, is that something you have to ask, from your doctor. That’s not something that’s just offered.
Chris: No, you actually have to intentionally find out your genome type. It’s not difficult; when you go to your GP, you say you want to find out your genome type and they say, fine. They just do a simple blood test, and maybe a week later they’ll find out and they’ll come back and they’ll tell you what your genome type is.
Lauren: All those treatments and tests are covered under the NHS, aren’t they? A huge difference to this country!
Chris: Yeah. I mean, the thought of having to pay to find out whether you’ve got the sickle cell trait is something that’s just mind-boggling to me.
Lauren: Because a lot of those tests, if they’re not offered as standard, then you’re liable over here, at least. And what about the future of sickle cell treatment as well. Because right now, we’re talking about blood transfusions, and there are all kinds, and we need more blood donors. But there is talk right now … the buzzy conversation around sickle cell … is that there appears to be a cure emerging, right? Using stem cells, I believe. Can you tell us a bit about that, and whether it’s something you would consider — and why?
Chris: Stem cells are a very interesting topic. I, personally, am against it purely because there’s a high mortality rate. And that’s why it’s not offered as a given. It’s only offered to those who are on the far end of the spectrum. They’re dealing with sickle cell on a daily basis… like, every single day they might have a crisis. That’s how severe it is for them. There are not many stem cell donors in the first place. So that’s the hardest part.
If you think finding blood donors is hard, stem cell donors are even rarer than that.
And then, the process is extremely painful, in the sense that they have to go into your bone marrow. For people who hate needles, the needle for stem cell is a lot thicker, a lot longer, a lot more painful. You get it, I think, in both your forearms and in your legs. And basically they inject these stem cells into … you generate stem cells and they’re meant to work together. Essentially, your stem cells are basically the foundation where all the DNA is held. So you’re basically resetting that, or you’re modifying some aspects of it.
Lauren: But there has been some success. There have been a few cases.
Chris: There’s been some success. But it’s few and far between. There’s quite a high mortality rate, as it stands.
Lauren: Right, so it’s not something that you would consider right now, but it’s good to know that that’s an option that’s available for people who are dealing with crises every day, and really severe.
Chris: Yeah. I think it’s offered a lot more in America than it is here in the UK.
Lauren: Imagine how expensive it is here, though.
Chris: From what I heard, I think the figure was $100,000 or something like that?
Lauren: I don’t know. It depends on the person’s health coverage.
Chris: I think for me, it’s a lot easier for me to manage on a day-to-day.
And I’m grateful, and I think that’s why I do advocacy so much.
Because if I’m in a position where I can be healthy and use the fact that I am healthy but I do have sickle cell … to be an advocate and speak on behalf of those with sickle cell who are in hospital every week, or every two weeks, or in hospital all the time … it’s nice that you have a mouthpiece or know that someone cares about what you’re going through. And is actually experiencing it. They’re not talking from a research point of view or a doctor’s point of view, it’s from … this is my life. So there’s a lot of relatable that you can have between yourself and someone else.
Lauren: Absolutely. I think that’s a really good point to make. So tell us about the future of The Sound of Sickle and what you guys are working toward, and where people can find the organization and find what you’re up to.
Chris: It’s crazy!
Lauren: It’s growing fast.
Chris: Yeah, it’s taken off a lot quicker than I expected. I’m grateful for it. But I’m also really scared in the sense that it’s like having a child … you’re wanting it to grow and you want to shelter it and make sure it goes and does the right thing. It’s exactly like a child. You want a child to grow up with the best morals, the best principles, and to go and do exactly what you told them to do and live a very virtuous and upstanding lifestyle. Then, you know, it’s out of my control. It’s still in my control, but it’s forced me to change my …
Lauren: Your expectations?
Chris: Yeah, my expectations. One, the content I put up my own personal personal profiles.
I can’t be an advocate for something like sickle cell, and then be be caught in a silly scandal of doing something silly.
Lauren: So you’ve had to calm yourself down, essentially!
Chris: All those kids on Twitter or on Instagram, they’ll just put out content and not think anything about it. You can do that. When you don’t have anything to worry about, you can do that. Why wouldn’t you, online?
Lauren: That’s what being a teenager’s about, I think.
Chris: Yeah, you have that freedom. But I think the older I’ve got, the more I’ve tried to rein it in. Once this kicked off, it’s now, like, this is TSS … this is The Sound of Sickle. And when it’s related to Chris directly, to what Chris does, this represents The Sound of Sickle. So that’s one thing, to find a balance.
Lauren: Well, maybe in some ways that will also help rein you in, in terms of whether you’re partying too hard. It might help avoid a crisis.
Chris: It’s actually changed a lot of the way I put content online, the way I stop myself …
Lauren: And it makes you take yourself more seriously, too, in a way.
Chris: Yeah. I feel now like a professional, like a businessman sort of thing.
This is me, the CEO, in my suit and tie!
Lauren: But you don’t have to wear a suit and tie to be a CEO, which we’re both proving right now.
Chris: Yes, yes. As I wear my vest top!
Lauren: I’m, like, in my house coat!
Chris: Professional, not professional. Doesn’t matter. Professional is the work you put out. That’s all that matters.
Lauren: Yeah, absolutely. So if people want to find the work you’re doing, is it best to check you guys out on Twitter?
Chris: Yeah, I think Instagram and Twitter, both. We put our content on there equally, I think. Instagram has a lot more; it’s probably the better base for us. I think Twitter is better for me. So if you want more direct updates from me, Twitter. But if you want a general update, Instagram is probably the best place; it’s where we put up all of our social posts. It’s where I put up a lot of stuff that I’ve done, spawning from The Sound of Sickle in terms of speaking at events. Christmas we did ‘The Face of Sickle’ campaign where we got people with sickle cell to speak about it for themselves. We had one-liners, we had videos, we had still images and quotes from them and how they feel about sickle cell.
I think for me, it’s always good to put a face to a condition that is not necessarily seen on the surface.
Because then you start to relate and say, oh, I know that person … or, that statement’s sounds familiar… or, oh my God, is that how they feel? I think you start to relate to it more on a human level. It’s not from a distance. You get involved a bit more. And it’s lovely.
Lauren: Yeah, absolutely. And you’re connecting more and more to the community, and not just the sickle cell community but the broader chronic illness community, which is wide and varied. And quite beautiful and super inclusive, which is really nice. Of course, we’ll link to the Twitter and the Instagram feeds for The Sound of Sickle on the episode page so people can find you guys, as well. But we’re heading into the end of this interview, and I like to wrap up with a couple of Top Three lists. I’m wondering what your top three tips would be for someone who is living with chronic illness. Maybe they suspect something’s off and they haven’t been diagnosed yet. Maybe they’ve got a sickle cell diagnosis. Maybe they have a sickle cell trait and they’re not sure if they’ll pass it on to their kids. Or maybe they’re a loved one, or even a doctor. What would you recommend … top three tips for people who are living that chronic illness life and diving into sickle cell the way you have?
Chris: I think for me, knowledge is key. I think read and relate your experiences to what you’ve read. That’s what I learned the best, I think. Experiencing it myself and knowing, okay, well, this is how I’ve dealt with it, but then reading and see how people’s experiences are. Reading and find out what the NHS has to say about something. Or Web MD, which always says you’re already dead.
Lauren: (laughs) Everyone’s says, don’t look up anything on Web MD!
I think knowledge is power. Always read, and relate your experiences to what you’ve read.
And personally for sickle cell, speak to others or seek out others with sickle cell. Because I’ve found out that speaking to others and creating the group that I’ve created for TSS has helped me. But also has helped the group chat, because there are times when you feel mentally down. And if you come to group chat and you just brain dump, you just speak your mind … there are about 40 of us. And we’re really supportive.
Lauren: Yeah, a few of you are on the dock together and are, like, “Yeah, I’m having a sh*tty day.” I send a message and then Chris gets back to me. It’s just nice to have a sounding board.
Chris: That’s what I want to do. I know how when I was growing up with it, there was literally nobody. And I think once you start to find people and have that conversation … one, you’re no longer alone and when you feel sh*tty, you can go to us and hear us say, “Hey, I feel sh*tty as well, so let’s just feel sh*tty together.” You can have that conversation. It makes you feel more human, it makes you feel more normal. Because you always feel … not abnormal, but you always feel you are not the same as everyone else when you have these conditions. And the third thing is, know your body. Know your body is the top one for me. Once you know your body, you know how to deal with things, you know what’s normal, you know what’s not normal — and you know how to manage in between. I don’t get headaches, and when I do get a headache, I think, mmm, so maybe I should drink a lot more fluid and then take paracetamol and then sit for a bit and see how that works. Or, I can preemptively feel a crisis coming on, and I wouldn’t know that if I didn’t start paying attention to my body and start taking note of when these little things happen.
Lauren: Are you able to avoid a crisis when you feel it coming on? Can you feel the little triggers and go, hmm, let me just fix that?
Chris: Yeah, that’s how I’ve stayed out of hospital for so long because I can feel these triggers inside, up my fluid intake, start taking the paracetamol/ibuprofen/ the codeine and attack it before it starts to get severe.
Lauren: So last question for you. It’s another top three list. It’s a good one for you especially, because I know you like to live your life regardless. Top Three things that give you unbridled joy; that despite ways in which you’ve altered your life to manage symptoms and crises, what are top three things that just make you so happy you would never give up? They could be comfort activities when you’re in a crisis. They could be guilty pleasures. They could be just things that make you happy. What are your top three?
Chris: Top one is my beautiful PlayStation. Anytime that I’m ill, it’s … right, let’s take some painkillers. Let’s get this bad boy on and let’s forget about it. I think for me, it’s always forgetting about pain.
Trying to forget about pain and distracting myself is how I’ve managed to deal with my pain for so long.
That’s one for me personally. Two is … I take a lot of pride in drinking juice, squash.
Lauren: When you say squash … for Americans, that’s concentrated juice that you mix with water and it sort of gives you flavored water.
Chris: Yeah, essentially. I like Ribena.
Lauren: Ribena, that’s a big favorite. If anyone has a British connection, they should know Ribena. It’s like a blackcurrant flavored syrup.
Chris: Oh, great.
Lauren: He loves it!
Chris: Yeah, because I’m meant to drink water, that’s what I can drink. Water is my number one drink. But sometimes just some nice ice cold squash just goes down a treat. I just think, I’m going to finish this. Glug, glug, glug.
Lauren: You’ve been drinking juice during this call.
Chris: Yeah, that’s what I love. And the third one … and I think I appreciate this more now, and I think I’ve appreciated it the most when I had my recent admission … is friends. Weirdly enough, you always just want to deal with it yourself and just get it over and done. But when you start to realize that people actually care about you, about what you’re doing, your health, every aspect … you then start to think a little bit more, and you enjoy those times.
When my friends came over to see me in hospital, for the first week I was there, there was someone there every single day.
It was great because you now have a reason to live life. You look at them and say, actually I want to be out of here and be with you guys. It’s kind of a strength. It props you up a little bit … you say, let me force my body. Because a lot of illness is mental. Once you get your head around whatever’s going on in your body, you can then say, you know what … I’m not going to let it defeat me or bring me down. You start to have a positive mindset, or maybe a defiant mindset … whatever gets you going, you kind of get up and say, you know what, I’m going to enjoy it. You start to say, I’m gonna discharge myself in two days’ time, I want to discharge myself in three days’ time, or whatever. So I’ll set deadlines, and say, look mate, I’ve got to hit this. And that’s what happened this last time. I got better; I said, I’m gonna discharge myself because I don’t want to be in hospital anymore. It’s boring. There are all kinds of negatives; when you’re around people that are ill, you start to feel a little bit . … in the hospital, it’s not private or anything like that. It’s not fun when you have people screaming or crying, and you feel a little bit down. It starts to get you upset and you start thinking, why am I here? Is my illness that bad? You can go down a dark and terrible path, and friends are those lights that say, “Actually man, this is what you should really be looking.”
Lauren: And they remind you of who you are, it sounds like, really. That your identity isn’t your illness, it’s just a part of who you are. It isn’t all of who you are.
Chris: Exactly, it’s not a defining factor. Obviously it impacts you, but it’s not a defining factor. Especially for this one when I’d wake up in the morning and they’d say, “Right, I’m here to take bloods.” And it’s 8 o’clock, and I’m supposed to sleep until 9, please? They come in, they’re taking bloods and it hurts every single time. Sometimes they’re poking in the wrong places. And you just get down. ‘Why me’ is what you’re always asking … why me? And your friends just see you as this all-encompassing great person. They must think you’re great if they’re there!
You draw positives from them being positive.
They may be looking at you and saying, “We’re so sad seeing you like this.” But I say, “I don’t want you to be sad for me because I’m not sad for you right now. I’m happy. I’m happy that you’re here.” I start to tell my body to be whatever it needs to be.
Lauren: I think that’s really beautifully said. Any last words for our listeners tuning in learning about sickle cell today, Chris?
Chris: Donate blood.
Lauren: Donate. Especially if you’re in the Afro-Caribbean community, donate.
Chris: Afro-Caribbean, any community. There’s this thing…what can I do that’s charitable?
Lauren: And this costs you nothing and it doesn’t take long, and you usually get a cookie!
Chris: Yeah, cookie, and everyone gets a bit of squash! It’s 15 minutes and they vet you extensively beforehand. When you get there, they plug you in, and they’ve checked you, and they say, “Make a fist,” and it’s just 15 minutes up. You can be on your phone, you can watch movies, you can nap if you want — and then you’re good to go.
Lauren: And you can legitimately save a life. You can really contribute to people’s wellness that way.
Chris: I took nine units in total, which is nine people donating blood when I was in hospital. Just think that if there weren’t people donating blood as frequently as they are, then I wouldn’t be able to receive that blood. And God knows what would have happened … I’m not going to even think about that. That’s the worst case scenario.
For people who want to donate to charity, just donate blood. It’s free.
Lauren: Absolutely, and you can really change a life. Well Chris, thank you so much for being on the show today. It’s been so awesome talking to you, and I hope that when I’m next in London, we can hang out. And when you’re over in LA, you better let me know!
Chris: Absolutely. When you’re in London, shoot me an email, give me a shout. I know all the cool spots if you’re into tech and games, drinking.
Lauren: Sure. Mostly the drinking!
Chris: Everyone loves a good drink. I know all the great underground places.
Lauren: I learned how to drink in the UK. I’ve forgotten a little bit, but I learned how.
Chris: I shouldn’t be advocating drinking because I have sickle cell!
Lauren: Livin’ your life! Well, thank you so much. It’s so great to meet you, and I’m really excited to watch The Sound of Sickle continue to grow and do great things.
Chris: Thank you very much. I appreciate it. It has actually been a joy speaking to you.