13 Connections: Part II
In Connections: Part II, I continue my conversation with Simone Webb, PhD researcher at Newcastle University, where we speak about what it means to live with a chronic illness. I particularly appreciated the poignant advice that she shares with me and our audience towards the end of our conversation, and I hope that I'll carry Simone's advice with me for years to come.
Thank you, Simone, for beautifully and authentically sharing your story in this two-part series.
The transcription of our conversation is below, with edits for clarity and brevity.
Asma: Hello world and welcome to Her Royal Science. Thank you so much for joining us for today's episode. Today, we will be chatting with Simone Webb, a PhD researcher currently studying Bioinformatics and Immunology at Newcastle University. She's one of the co-founders of the upcoming Black in Data Week, which is due to take place between the 16th and the 21st of November. I hope to speak with her today about her journey in STEM as a Black woman with a chronic invisible illness, as well as the necessity to create a supportive community.
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Asma: I did also want to talk about something that you touched upon [in our last conversation] – living with rheumatoid arthritis. You've been quite candid about it and I wanted to know, in a little bit more detail, about what it actually is. For people that are not as familiar with it, could you give a little bit more background as to what rheumatoid arthritis is?
Simone: Rheumatoid arthritis (RA) is an autoimmune condition, so that means your immune system is attacking your body, [or] some part of your body, ‘auto’ meaning yourself. It's a condition affecting your joints, so my immune system is attacking my joints and mistakenly thinking it's a bad thing. [RA is] often mixed into the heap with osteoarthritis, which is little bit more age related, and that's what people would conventionally think of as ‘wear and tear’, although of course that's even more complex than that; it's not necessarily just ‘wear and tear’. Even as a biology undergraduate in the fourth year of my degree, before I got diagnosed, I didn't see arthritis as a thing that a young person could get, you know? I should have been all clued up because of what I was studying, but I wasn't. I just thought, Arthritis? That's for elderly people, that's not for me.
With RA, joints get really swollen and difficult to move, [and] it can cause problems with mobility. You need to get onto medication quickly. You need to just get onto some good medication that dampens down the immune response to your joints. I guess one of the disadvantages, generally, to taking these medications is that your immune response to loads of other things is also dampened, so you're more likely to get the flu or COVID, which would not sound fun... It’s just a little bit difficult to get medicines that are really precise for those immune cells attacking the joints, because the underlying mechanism isn't so clear. So, it's a bit of a large-scale attack on this massive army.
I’m taking some medication that dampens the immune system in that general way and that has really helped ease up the swelling and the joint pain; [it] helps somewhat with the fatigue, which is also a side effect of your body having this constant battle.
I got [RA] in the fourth year of my undergraduate degree. Because it's an autoimmune disease and it's to do with your immune system making that mistake, it can happen at any age. Loads of things are thought to set it off; even small things like temperature changes, so perhaps because I’d just come back from a year abroad in Australia, that could have been something that set it off.
Asma: Oh, wow.
Simone: Could have been but you never know. There could be some genetic predisposition, but I don't really know anyone else in my family that has it, but a lot of my family is based in Jamaica, and [with] a less severe case, maybe they wouldn't [be] diagnosed.
I was doing Taekwondo training at the time, quite heavily. I spent maybe six hours a week training and, you know, active London-life... well, pre-COVID, pre-lockdown London life: out and about, busses and tubes all the time, different people's houses all the time, student-life as well: in lecture theatres 9-5 or labs or the library... so there were loads of reasons why I thought that my initial case of shoulder impingement was understandable. [I thought], maybe if somebody kicked me in my shoulder, then I could have a little bit of a tinge in it.
But it was a bit weird because within a month of getting that little shoulder impingement, which was just a little bit of a niggle in my shoulder, I got the exact same thing in my left shoulder. Then my right knee, my left knee, my right ankle, my left ankle. And I was like, why am I hopping? This is strange. Okay, this is symmetrical; I'm a bit worried. And throughout the whole thing, I’d been speaking with my GP and she said, ‘yeah, I've given you painkillers for your shoulder, but this is clearly something bigger and systemic.’
This was the point at which I began to Google.
Asma: Uh oh!
Simone: And it tells you you’re going to die (laughter). But I pretty much landed on the symptoms of RA: you get swollen joints and... uh, race comes into everything, but a lot of the ‘swollen joints that are red’ was hard to tell for me, because my joints aren’t going to [become] red. I’m brown, so it’s hard to see that. I wasn't 100% sure because some of the symptoms... I didn't understand if I did have them. But it [was] quite an aggressive onset at first. It actually meant that I was bed-bound for months because of this.
It took 3-4 months to get seen by a rheumatologist because the waiting list was quite long. NHS works as hard as they can, but there are loads of people waiting to see a rheumatologist and they normally, you know, prioritize the first cases, where you need to get that diagnosis in and get on medication. They do try to diagnose within three months and put you on medication. I did get really good care. I got on medication a while after but that was after quite a lot of sleepless nights. I move, I twist in bed. My feet are on my pillow in morning, or I’m sideways.
If I'm moving so much, I'm waking up because I’m feeling it, so that was the annoyance as well. I couldn't sleep well. When I did get up, I was super stiff; I was walking like a little old lady. It was hard to sit down, stand up... lifting a jug or a kettle to make tea was just impossible.
[There were] so many adjustments; such a steep learning curve. Also realizing the time and the capacity I had to do things was a massive learning curve for me because I was like, Simone, you have to prioritize things. Previously, I was 100% all the time. I was like, well, of course I'm part of Taekwondo and [different] societies, and of course I see this many groups of friends every day. (Laughter) And I see my sister, and my grandma shouts at me for not seeing her often; like, all of this is happening.
Simone: And then realistically, you have the capacity to have a conversation where you can focus for 15 minutes once a week, because I'm sleepy, you know? I can barely catch the conversation and keep it going, because I'm just there like, ow, my knee, my knee. Okay, move the knee. Or, I'm just tired; I'm just looking at you, like, repeat that again?
It went to, well, I need to do this degree. I'm just in bed and that meant that I coded more; I got better at coding because I had to. It was a practical thing; I couldn't get in the lab and get better at labing, so the coding was the thing that worked. And luckily, my project was coding so I got to do my work.
That’s literally all I focused on. I couldn't think about what was to come next. I just tried to finish that project. I finished it, and I was relieved. Then I worried about what came next afterwards. But it was a massively steep learning-curve, and it was a big reframing of what I thought I was, what I could do, what was important to me, and what I want to spend time on.
Asma: Mmhmm. I'm wondering now if it affected your coursework. You said you were in your fourth year, so at that point, were you just doing a research project?
Simone: Mmhmm. I was doing an undergraduate-masters; I was mainly just doing my project work, luckily.
Asma: I just wanted to double check because in the US and in Canada [for] four-year degrees you do courses all throughout, so I wanted to see what the differences were there. I'm glad that it didn't affect your transcript or anything like that. You didn't have to look back and [think], wow, my grades were really affected by this, right?
Simone: No. I mean, they were but I kind of had to make it work. How do I put it... I couldn't let my grades be affected.
Simone: I knew things would take me longer, so I had to just make them take me longer to get the same quality of work.
Asma: Right. Okay, so that's the adjustment that you were speaking of, right?
Simone: Yeah. It could have massively affected my grades. I mean, the easiest way it could have affected my grades is that I could’ve dropped out, which I was so close to doing because I didn't think I could do it, and I didn't feel like I had the capacity to go to two or three medical appointments a week when I felt like I could barely move, as well as do work.
When you've got a chronic condition and you're in a flare, like I was, it becomes a part-time job or a full-time job where you're waiting in the hospital [for] half the day for an X-ray, and then you have to walk down some stairs or get in a lift to get a blood test. [It] takes ages to walk because your mobility is affected. And then you do the blood test and you’ve got to get on public transport, which is an absolute terror, because you're scared of the bus jolting or turning, [you] falling off the chair and not being able to stand up because you can't take the weight of your body in your wrists. It is a lot of time and effort to maintain your care while you're in a flare, and that's not massively appreciated. And I was going through this flare for the first time, so I had to learn all of this on the job. Gosh, I need to go here. Okay, this is the quickest way to walk this way. This is the person to speak to at the blood test [so] that they do not bend your elbow in a weird way and mess you up to the rest of the week.
It was a lot of learning and it took up a lot of time and if I spent, you know, six hours a day on my work as I would have before, maybe then I wouldn't have been able to get the grades I got because that wouldn't have been enough. That wouldn't have [accounted] for all of the fatigue I would have felt in that six-hour block and all of the medical stuff I would have had to do in that six-hour block. I had to adjust [so] that I could still get that quality of work and pass. So, it definitely affected the work, but not in terms of my grades went down; in terms of, I had to rejig my life in order to maintain my care and still get those grades.
Simone: Which was just a whole other world to me at that time.
Asma: How did people treat you when they knew that you were dealing with RA?
Simone: Hmm. I think I was a little bit cautious about saying it at first, because I was worried about how I'd be viewed. It such a, you know, like an old lady’s disease or something. And I was like, oh, it's a bit embarrassing. I've got arthritis. How am I going to say that to people?
I think because it affected me so visibly... I went from doing the most to not being able to go to certain things, or not wanting to go to certain things. I wanted to conserve my energy to do something else.
Simone: All of my close friends knew because the stuff we would do together changed. But it was sort of affirming because all of my close friends that I told were really supportive and it showed me that I had put myself around really positive, caring people. I thought I was keeping it to myself but it only took me about two or three months to be like okay, this is breaking-point. I’ve stopped going to Taekwondo; I can’t train anymore. I’ve been in bed for a month or two now. I've kind of gone AWOL, off of social media, my friends are messaging me.
I mean, I was worried [about telling people], but in an abstract sense. In the act of it, I didn't feel like, oh my God, this could be make or break; they’re not my friend anymore. I just felt like, okay, I've got to tell my friends bad news kind of thing.
People were generally really supportive; I had friends come around dropping me cheese and bread off... shout out [to] Layla and many other friends just coming by to say hey because they knew I had dropped off and just wanted to see how I was.
I think that I was just sort of lucky to be around really nice people. I don't think I necessarily lost contact or stopped speaking to anyone based on them feeling uncomfortable or us falling out because of anything like this.
Simone: Or it being awkward. Even when they didn't know what to say, I’d [say], ‘look, man – you don’t have to say anything, that’s fine.’ And then we moved on.
I was a little bit nervous, and that's the thing: you’ve got to tell people when you come to terms with things as well. And to be honest, it took me like two years to, honestly [and] truthfully to myself, come to terms with [it]. I'm not mourning, I'm not in denial. I'm not angry. You go through this whole thing because it feels like your world is taken from, you know? You've got to adjust to this new normal. That's the phrase that everyone can appreciate now in light of COVID19 – this ‘new normal’ idea. Everybody with a chronic illness that has had it not in childhood, [but] acquired disease or acquired disability, understands the idea of new normal and what that means. And that massive adjustment and that realization of, I need to prioritize what I really care about and tell people, if you want to tell people. It’s a lot to come to terms with.
You go through this thing of, why is this happening to me? I’m in the final year of my undergrad. I'm young. I just want to get my degree and have fun with my friends and my family. Why do I have arthritis of all things? Why is it going to be with me for the rest of my life? Why do I have to worry about this thing for the rest of my life? [You] go through this real denial, like, this is ridiculous. How come it's happened to me?
[To] then, okay, this is the situation. Can I please not be in pain anymore? And then I was like, Okay, I just need to get on this proper medication. And then I became this fake doctor. [I thought], Okay, I'm going to get proper clued up; I'm going to have biology conversations with my rheumatologists and properly understand why they've given me this medication, and why that was the best for me. And then it was the whole, I'm somewhat coming into remission – and that's the stage right now, somewhat coming into remission – What does that mean for the long term?
And that was when I had finally reached a stage where I had accepted it to myself. That's why I speak about it openly now because I'm like, I've gone through the denial. I've gone through the adjustment of what is important. I've gone through the everyone in my life basically knows, plus the general public. So now it’s, what do I have to do now to be okay? What do I need to put in place to be okay? Is this medication all right? It's being able to speak to my doctors and say, Look, I want to be on as little meditation as possible but not flare, because I know that long term, this stuff is going to damage my organs, maybe. I'm trying to think forward now and be like, what do I need for future me?
Asma: Mmhmm. And are your doctors receptive to that?
Simone: 100%, yeah. They've just been frank in some terms, and have been like, look, if you lower this, I think you will flare, so I wouldn't recommend it. [They’ve] just giving me loads of different advice, where I can sit back and they make it very clear that it's my decision.
It's been maybe three years now, and it did take me over two years to say, you have RA. I think, it’s when you're able to start looking to the future, look forward and say, this is what I need to maintain myself, and maintain my health and do other things on top of it.
That's very much been a new thing for me for the past year, to be able to look forward and think, Well, what is the medication that works for me? What is the lifestyle that works? And what's the sleep that works for me? I should be drinking more water. Give me that water bottle. Let me make sure my water bottle is with me all the time. Let me make sure I take my meds in the morning and [not] forget; let me set an alarm.
You know, looking after yourself is like a job. It's hard. It's so hard, but it went from a full-time job looking after my health to a part-time job, to now it's an hour a day, maybe. It's work, and I'm trying to treat it like work.
Asma: Mmhmm. With the same care and the same responsibility, because you do owe it to yourself to look after yourself.
Simone: Yeah, and I think it's interesting because if I treated looking after myself, for my health and my mental health, like a job – like I do now because I have RA – before I had RA, imagine the impact it could have had.
Simone: I think treating it like a job and this mentality has helped other areas, like my mental health, because it is like, Well, you've got to do this. This is good for you. This isn't good for you. It's been a way of thinking that has helped. And it’s definitely made me more honest.
Asma: With yourself and with others?
Simone: I think maybe with others, by necessity. I guess, more upfront. I think, maybe I would beat around the bush and be really British about things [and say], oh, maybe you could do this. Whereas now, it's like, I need this environment. If that's not okay, then this can't work. I'm sorry. This is it.
I’ve learned a lot from this. And I would be lying if I said that the stuff I've learned hasn't been positive, hasn't been good for me as a person, as well. I think it’s helped with being clear with what I want so that I can tell other people. I can't lie to myself and be like, well, you know, you're fine with the situation, because some part of me is now like, you have to tell this person because your elbow will tell you if you don't.
Asma: That makes a lot of sense. And I like that you're also sharing these discoveries now with other people because, like you said, it's one thing for you to grow from it and it's also another thing to say, ‘I've made the same mistakes', or 'I was hard on myself unnecessarily', or 'I prioritized the outside working environment more than I prioritized my internal mental framework.’ And sometimes you just need to hear it to know that it's okay to think about yourself as a priority.
It’s so sad that we automatically think, well, I'm doing this for someone else so I'm going to put this at the top of my to-do list. And then if I happen to have some time later on in the day, I'll cater to me; when how are you supposed to be a good friend, a good family member, or a good employee, when you can't even really be kind to yourself?
The last thing that I wanted to talk about today, just so that we can wrap up, is this idea of intersectionality, and what you would share with someone else. It's a great lead in from our previous conversation – what advice would you give someone who's in a similar position – maybe a person of colour, or more specifically a Black woman, with a chronic illness that at times can be invisible? I'm sure when you show up on Zoom, no one can see your joints, no one can really read your face and know what kind of night's sleep you had, or lack thereof. What would you say would be the thing you've taken away from this entire experience?
Simone: I think I would say: fight against wanting to be or being asked to be the strong Black woman; really fight against that, and find help if you need it, because I think it’s presented to us as a strength that you can deal with certain things without complaining or talking about it. Especially with an invisible illness, it can really take its toll. I would really advise anybody in a similar situation to not feel like they have to be the strong Black woman, at least with people that care about them. And if they feel safe and comfortable, be honest and say how [you're] doing.
[Attempt] to bridge that gap and let people know what the reality is. I've found that to be a positive experience, but I know that it might not always be that you're speaking to people that will be receptive to it. It might not be the safest thing; it can also be massively uncomfortable and you might not want to define yourself by that kind of thing. And it might affect you differently as well. But I think letting people know how things affect you helps you both to bend your day to that.
I have found that really helpful because otherwise, I think, the days wouldn't have bended in that way and I would have struggled. Like, going on holidays with my friends. If we plan to do that 10K walk we would have done, it could have been tough if I was in a flare, but saying how I was doing helped with that.
The final bit would be definitely to know that you're not alone.
Simone: One of the first things that I did when they diagnosed me was just sort of sit in bed, on YouTube, looking for people sharing their experiences of RA, and I stumbled upon a Black woman called Yolanda, from South London from a Caribbean background, that was sharing her experiences of RA. She's in her 20s, maybe early 30s, and my jaw dropped.
I was like, what? How could you have RA? You look so young, and beautiful, and fresh. I’d go through all of her videos on repeat, trying to understand her experiences, what she went through, how she dealt with the diagnosis, [and] how she got to the medication that worked for her. I then saw her even do an injection, and that was the first example – and actually the most valuable bit of information about that injection that I got from anybody – in the lead up to actually being prescribed that six months later.
Asma: Oh, wow!
Simone: I saw her do it. She explained it, beginning to end. And I was like, maybe during an injection for yourself isn't the scariest thing in the world. Six months later, the rheumatologist says to me, ‘yeah, you're gonna have to take this. Are you comfortable?’ Well, Yolanda did it, so yes. Sounds all right, worked for her. I have hope. It's not just a medication that was only trialled on white people, do you know what I mean?
Knowing that you're not alone or finding resources or groups of people that remind you that you're not alone is really important. It could be people who obviously have the same condition as you or maybe just people from your background that can maybe understand different elements of it... it just helps to not feel like you're the only one.