Episode 80: Antiphospholipid Syndrome, Lupus, & Mental Health with Sheryl Chan

Episode 80: Antiphospholipid Syndrome, Lupus, & Mental Health with Sheryl Chan

Overview

Sheryl Chan is the writer behind A Chronic Voice, a blog that aims to articulate lifelong illnesses through various perspectives. She herself lives with multiple diagnoses, which include autoimmune disorder antiphospholipid syndrome, Sjögren's syndrome, epilepsy, lupus (SLE) and more. Beginning with a mini stroke at the age of 14, Sheryl’s experience was followed by multiple blood clots in the lungs and legs, a gore-tex band for a heart valve (she then developed PSVT — paroxysmal supra ventricular tachycardia — after this mitral valve repair in 2011), seizures, scars from various surgeries, and ongoing chronic pain associated with lupus. She’s been in out and out of hospital rooms for so long, she knows what it’s like to face mortality and to battle the mental health after-effects of such critical situations. One thing Sheryl truly works to destigmatize is mental health — from depression to anxiety and everything in between, she hopes that by sharing her experiences, she can share that it’s OK…to not be OK. As she says, “Let us simply get through it together one day at a time…and if need be, one second at a time. I can, I can, I can. That’s three seconds down.”

Takeaway

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Transcript

Lauren: All right guys, thank you so much for joining us. I am here today with the lovely Sheryl Chan. Sheryl is joining us all the way from Singapore, and is a fellow Spoonie and founder of A Chronic Voice. So you may be familiar with her across social media. She lives with numerous chronic illnesses. She's going to tell us all about them. So Sheryl, thank you so much for joining us today!

Sheryl: Hi, Lauren! Thanks for having me. It's lovely to be here.

Lauren: So let's start at the very beginning. Give us your life story. Can you tell us when and how you first realized you were sick, and what steps you've taken to control your health? I know there are multiple diagnoses. So hit us with the barrage!

Sheryl: So it started when I was 14, when I had a mild stroke. Half my body was numb from head to toe, and I just had to drag myself to a nearby clinic. And he referred me to the hospital, which I had to wait three months for.  And they found that I had antiphospholipid syndrome [APS].

Lauren: Can you tell us what that is?

Sheryl: Yeah, it's a blood-clotting disorder where my body kind of produces extra antibodies, which clots the blood. So I need to take blood thinners every day to thin my blood more than the average person. That's how it all started. And I was told I couldn't play any more contact sports, which I loved as a young adult. I just went home in shock. I just couldn't speak. My mom came into my room at night, and she just hugged me. She didn't say anything.

And we started crying, because there was nothing to say really, you know … you're just overwhelmed.

Lauren: What were the symptoms that led up to that diagnosis and you seeking out medical treatment?

Sheryl: I just had a mild stroke.

Lauren: So it was literally, just the stroke and then you got the diagnosis.

Sheryl: Yeah, that's right. So they took my blood and everything. 

Lauren: It’s great that they caught that, because a lot of people probably would have waited much longer for a diagnosis like that. It's a very interesting turn of events that you went from 14, when you're probably at your invincible, being fully able-bodied, to then … especially being on blood thinners … that’s something with contact sports … like, if you get cut, if you're injured, then you have to be extra careful now.

Sheryl:  Yes, I can't play and have to be extra careful. Because most people find out later, especially women when they get pregnant and then they lose the baby at, like, eight months. So it gets trickier for people with APS in the later stages of pregnancy.  I knew someone who had lupus and she didn't know she had this problem as well. And she lost a baby just five weeks before giving birth. 

Lauren: Wow, how sad. 

Sheryl: So not a good way to find out, I know.

Lauren: I suppose there's no good way to find out, is there, because it's such a life-changing diagnosis. But in a sense, it's lucky you caught it without another life on the table.

Sheryl: Yeah, but I didn't really … you know, as a kid, you don't pay full attention to the diagnosis. There’s no pain; it’s not really something that causes me pain. So I continued playing football and basketball and everything.

And I had a massive blood clot in my lung at 17.

Lauren: Oh my goodness. 

Sheryl: And that nearly cost me my life, because the doctor I went to said it was just a muscle cramp, basically. So I waited two days until I couldn't breathe before I sought help at the hospital. They took my mom aside; they said, If she doesn't make it through the night, she's going to die. And my dad was in the US, so he was 24 hours away. And that day my sister was at the police station for … you know, teenagers …

Lauren: Being badly behaved?

Sheryl: For sneaking into clubs. So it was pretty stressful for my mom that night. But I wasn't worried, strangely. I guess when you're fighting for your life, it's actually easier not to think of anything bad. It's more like during the recovery period that it's very depressing.

Lauren: I think that's actually a really good point. But I also wonder whether it has to do with your age. When you’re 17, when you're a teenager … despite the fact that you had this life-changing diagnosis three years before … I also wonder if that had an effect on your mindset. Because still, as a teenager, you were playing sports; you had that attitude of well, of course, I'll be fine.

Sheryl: Not just that. I think I was more religious back then as well. I was praying so hard. And I think at that age, I fought really hard. Like, I refused to take any strong painkillers, and stuff like that. Which is kind of stupid, you know … like, there's nothing to prove. You're in severe pain for two months, I couldn't even eat by myself, or even sit up in bed by myself. I couldn't do anything by myself, basically. I couldn't go to the bathroom. Everything, I needed help with.

Lauren: Do you think that was your first real experience with mortality, too. That it was the first time your body had really hit rock bottom, kind of?

Sheryl: Yes. It was the first time. And it happened so quickly, you don't have time to think about it.

The second time I faced mortality was at 25.

I had developed lupus after that, at 20. 

Lauren: And is that co-morbid with antiphospholipid syndrome? Because I know you mentioned that your friend with lupus also has the syndrome.

Sheryl: Yes. Because my body went under huge physical stress at 17 with this episode. It was like the worst case they had seen at the hospital, and my doctor said that probably triggered the genes for lupus and all this subsequent stuff. Because if that never happened, maybe I would just only have antiphospholipid syndrome to deal with now. So, at 24, they discovered that one of my heart valves was prolapsing. I couldn't breathe. Over the course of the year, I was starting to struggle with breathing, basically. So that was my second …

Lauren: Brush with mortality.

Sheryl: Brush with mortality. And it was different this time. It was slow; it happened over a year. Every month I realized, oh my, I can’t breathe, even more. That was scary in a different way. Every night I was just on my knees crying … whoever’s out there, help me, I'm not ready to die! I'm too young to die, blah, blah, blah. I had to raise funds to go to the Cleveland Clinic in the US, because the the doctors here didn’t want to do it. And basically the advice was conflicting. The Cleveland Clinic said I was young, I should get it done as soon as possible.

Lauren: And what was this, a surgery to fix the valve? 

Sheryl: Yeah, to repair the heart valve. And here in Singapore, they didn't have the robots to do it. They would have had to do open heart surgery, and I didn't want that. I didn't think it was good but for my bones, either. And the surgeon said, wait until you're nearly … you know, towards the end … before you try doing it. So the advice was conflicting.

Lauren: And Cleveland Clinic, did they offer a minimally-invasive option here?

Sheryl: Yes. So I wanted to do that because I was only 25 and I didn't think an open heart surgery made any sense.

Lauren: Well, it certainly brings higher risk with it, especially for someone like you who's on blood thinners.

Sheryl: Exactly. That was part of the problem with this, or any surgery; they kind of hesitate because of my blood clotting disorder. Sometimes people with my blood clotting problem … they don't die from the surgery itself. They die from blood clotting during surgery, because they have to stop the blood thinners in order to do the surgery. So they're dying, not from the surgery, but from their condition. That's the tricky part, you know?

So I managed to raise some funds, thanks to lots of kind people. $100,000 USD.

Lauren: That’s what it cost to go to the Cleveland Clinic then?

Sheryl: Yes, from here. I love that hospital. The doctors were great. The surgeons were great. I think that was the best hospital I've ever been to. Even the admin staff were all in sync, aware of what was going on. Maybe because I was an international patient, I don’t know.

Lauren: Also, because you're someone with a combination of illnesses, a very serious condition. One would hope that they would take it seriously. You also get what you pay for, right? If you're paying $100,000, one would hope the level of care is quite high.

Sheryl: I didn't pay all that. My family had to be flown there. We had to stay for two months. So that was included in the cost as well, not just the surgery itself. Because my whole family was there with me. I wasn't allowed to fly, because there were some air bubbles still around my heart and stuff. So we had to wait.

Lauren: My goodness. So you had that surgery, and they managed to repair the valve.

Sheryl: Yeah, he did a great job. I could tell, because sometimes with these heart surgeries, your boobs kind of get shifted. I could tell he tried to make it aesthetically even!

Lauren: There we go. Good job, doc!

Sheryl: Yeah! Surprisingly, he tried a new technique with me. I don’t remember what it was, but they basically tried to prevent more blood clots by being able to go in and draining all the blood from my heart so that they could go in more easily. It was a new technique they tried on me. I basically chose my surgeon myself, on the website. I thought, I think I like this surgeon … okay, I'll go with him. He was very nice.

Lauren: So you had a good relationship with this doctor, which is a huge part of going in for such a serious surgery. You want to make sure you like and trust the person.

Sheryl: Yeah, I'm not sure he remembers me now, but …

Lauren: It’s been a few years.

Sheryl: ...

I mean, I'll always remember him.

Lauren: Well, he changed your life.

Sheryl: Yeah! So after that episode, I'm no longer afraid of dying! I had two recent episodes where … during your period when it releases an egg, it kind of exploded. It wouldn’t stop bleeding, basically.

Lauren: Was it a cyst that could have popped, kind of thing?

Sheryl: Normal women can get it, too, when it releases an egg, I think. Sometimes it doesn't stop bleeding. For some women, it gets absorbed. They don't even know sometimes; they just feel some pain. But for me, it just happened so quickly; my blood counts dropped by like half. And the problem with me is I have antibodies in my blood. So it's really hard to find blood for me here. So in two days, they couldnt even find the blood.

Lauren: To transfuse?

Sheryl:  Yes. The second time, I went to my regular hospital. They had to inject me with all the blood clotting drugs, and then they were trying to transfer me to another hospital because they didn't have all the specialization … they didn't have a gynecology section. And the other hospital’s emergency rejected me. They said I was “too high-risk and we don't want to take you.” That was just ridiculous.

Lauren: They preferred not to treat you, rather than to try?

Sheryl: I’m not sure; maybe it's a political thing. But it went for, like, eight hours and I’m dying on the bed, literally. And they said, “We need an approval from a gyno before we can accept you as safe to be taken." So I had to be transferred to another hospital nearby, with a gynecologist to approve me to be transferred.

Lauren: Oh my goodness, so many hoops to jump through. It sounds like you're in the US with all these hoops!

Sheryl: She didn't even examine me. She said, “You just need to go to the other hospital right away.” She was pushing for me to go over and finally, I think after eight hours, I went over. I wrote an article about it.

I wrote to the hospital about it. I never heard back.

Lauren: So at this point, I mean, that's more recent and you've had these brushes with death. But there's more diagnoses that happened in between?

Sheryl: So I have lupus. I have epilepsy.

Lauren: When did that start happening? I know you had the stroke when you were younger, but this caused seizures later on?

Sheryl: I think I started having visual field problems, and they tested my brainwaves and everything, and they said I had epilepsy. But at 20, I didn't have any seizures yet. I didn't pass out or anything. I think I first passed out somewhere in my 30s with my first grand mal seizure, and they had to call the ambulance. They were terrified. I mean, when you watch someone convulsing on the floor?

The funny thing is, it's preferable for me compared to my other illnesses because there's no pain.

But the problem is after that, I am very confused for a long time. And it can be annoying because you're trying to work or do anything and you're just mixing everything up! I can't even count two plus three, basically; two plus three and I have to think really hard about the answer.

Lauren: It causes a lot of brain fog then, for sure. And is that something that the doctors might think is also related to the antiphospholipid syndrome because of the blood clotting issues?

Sheryl: It's really hard to tell. They were doing some psychological tests on me for a year because they couldn't tell where it was coming from. Is it the epilepsy? Is it the antiphospholipid? Is it the lupus? Is it my mental health/depression anxiety? They couldn't tell, and they kind of ruled it one by one. And they said, “Maybe it’s like lupus in the brain or something, but it's really hard to tell.” Because you can't really measure it, so it's a bit tricky.

Lauren: Wow. Unbelievable. And there's still more though, in all of this. We think the diagnoses are over, but there's also …

Sheryl: Sjogren’s syndrome.

Lauren: And that's related to lupus. It's kind of similar, right?

Sheryl: That’s right. So for me, they use the same drugs to treat it, and for me, the main manifestations are dry eyes, dry mouth. At my worst, it was the most severe pain, I would say. I think most people don't realize how painful a dry mouth can be; it's like needles stabbing into your whole tongue. For all my autoimmune diseases, only steroids help to push the pain down. Painkillers don't even work; morphine doesn't work. But the trade-off with steroids is, when I take too much I go a bit mental. It causes me high anxiety; I can't sleep, I go crazy.

Lauren: Aside from the fact that there's already, I’m sure, mental health concerns associated with all these diagnoses and how you've had to adjust your lifestyle. But then these drugs have side-effects, too.

Sheryl: It’s a trade-off.

And sometimes I have to weigh how much pain do I want to with how much anxiety I want to deal with.

Sometimes, the anxiety is not worth it.

Lauren: So it's a constant balancing act.

Sheryl: Yeah, exactly. 

Lauren: And you've been getting diagnoses and treatments all in all, really, for the past 15, 20 years.

Sheryl: It’s been going on for about 20 years. I've been on a fairly high dose of steroids for the entire time, because we've tried 10 different immunosuppressants, and none of them work. So I'm one of those patients that need to be on steroids for now, permanently.

Lauren: And in these strange times … I mean, we're talking in the middle of this COVID pandemic … you're one of these patients who is very much considered high-risk. And it's important for people to know … you look completely fine! But just because someone looks completely fine doesn’t tell you they're high-risk. They’re high risk, just trust them!

So you mentioned that your mom was around a lot helping you out, especially in the earlier days with your diagnoses and treatments. Did you find that you leaned on her a lot, or found another personal advocate at any point along this journey? Or did you learn to become your own advocate?

Sheryl: I think I learned to be my own advocate, because she used to follow me on my medical appointments — but we’d end up arguing after the appointment! Because we didn't agree, or she would ask the doctor questions that I didn't think were right, or stuff like that. And I basically told her, “Stop coming with me to appointments, otherwise we'll argue all the time.” So I ended up going for my appointments alone, and during that era, there were no mobile phones so I used to bring my notebook and write some poems for two hours and wait for the doctors. It was good alone time for me; I could read or something.  So it was good. And my dad, he used to travel a lot, so he wasn't around a lot. But he's always the first to be there when I'm in the emergency department, no matter what time it is so. He's the person to be there, to sign all the forms and stuff like that. But I think over the years, I can't think of anybody! I mean, there were people that came and went, that appeared when they were needed during certain periods of time. But no one that really stayed there from beginning to end.

I think I learned how to rely on myself to be my own advocate.

Because, for example, during the recent cases in the hospital where I nearly died again, I was telling all the junior doctors what to do, step one, step two, step three, step four — because they were panicking and they don't know what to do, and I've experienced it before so I kind of know the steps to handle it.

Lauren: And you have different anxiety levels over different routes with this, it sounds like. Because you know the steps, obviously, and they don’t. So they're freaking out, but you're calm because this is your normal!

Sheryl: I think when it's periods of super high stress in the hospital, I'm actually calm. It’s strange.

Lauren:  So in some ways you were meant to be in a hospital, whether as a patient or a practitioner! (laughs) You can handle the stress, though. And that's important because so many people living with chronic illness have medical traumas and have trouble being in these kinds of situations.

Sheryl: I learned a lot from that. I used to trust the doctors a lot. And I would just take whatever they say as the truth. And over the years, I've realized it's not always right. It has caused me pain, sometimes permanent damage. And now I'm just … if I need something, if I don't feel something's right, I just speak up. So I kind of learned from bad experiences.

Lauren: It sounds also, in pushing your mum away in some of those earlier appointments, that you were really also very true to your own body from the very beginning. You sort of plugged into what you were feeling, and knew what was right for you.

Sheryl: I think at that age, I was still learning. Maybe I was still learning.

Lauren: So it was a bit of bravado, maybe.

Sheryl: Maybe. 

Lauren: But has that impacted your relationship with your parents, too? I mean, I know they're showing up, but when you've had to push them away, has that caused strain in your relationships? 

Sheryl: I don’t tell them much about my condition, because they don't understand in a sense of a scientific way. I told my mom, I wish she would read up more about my health on the Internet. She says she's not the kind of person to read a lot of stuff; she just can't absorb it, you know. So they do show support in different ways, like financially; they pay for my medical bills every month.

They're there when I'm in the hospital, so they show it in a different way.

Maybe it's an Asian thing, I don't know. But I don't get much emotional support from them.

Lauren: I mean, I think all of this stuff is all such a case-by-case basis. But it's interesting that you bring up that cultural aspect of it. Because maybe that is part of it … it's so personal, that it's something that you experience on your own. So, you're managing a lot of symptoms, potential symptoms, triggers, day to day. And as you've said, you're on your steroids and having to monitor levels. What's a typical day looking like for you now? And how are you balancing the demands of work and life and working around what your body is telling you?

Sheryl: So right now, I have web jobs to do, so I'm quite happy because I haven't had one in a long time. And that's money, and money's important to survive. Right now more than ever, I really need to pace and make sure I have enough rest and my stress levels are down, which is very hard for me because I think, for me, work is the number one stress trigger.

Lauren: And yet it's necessary in order to pay the bills. 

Sheryl: Exactly. So on my normal days … I don't know … I have learned more or less to listen to my body. Especially brain fog. If I just can't do it today, I just leave it aside. I do something that I can do. Maybe I can write a bit. Even if I have to sit and just stare at the wall, fine, I just do that for a day. Because usually in one or two days, I'm better. And I become much more productive after that. So there's no point forcing things because it just makes it worse and you're wasting energy. I spend the time resting instead. So that helps a lot. So if the job has some flexibility, it's great.

Lauren: Have you struggled to find work that's flexible and allows you to work from home, as well? Or has that been something that's come fairly easily?

Sheryl: With the blog, it's become much easier because people are much more aware of my illnesses and they’re more understanding. They say, “Take your time,” or, “We understand.” Or I explain to them in the beginning that I might need some extra time. I've taken on jobs that were on tight timelines, and it didn't work out well. But I think sometimes you just need to try — even though it ruins your reputation a bit, I guess. You just have to try.

Lauren: Well, it sounds like you've been trying for a very long time, and obviously have done well. And I suppose in that sense, the sharing of your story on the blog, as you say, has been a gift for potential employers — but also for so many of us in the community. I know you mentioned about the experience you had waiting eight hours for the gynecologist referral. I'm wondering, given the nature of your illnesses, all of which are invisible to the naked eye, have you been in a position where you've been confronted and forced to validate the fact of their existence to someone else who couldn't see what was going on? Whether it was a doctor or a friend.

Sheryl: It happens a lot with strangers, I think. Like taxi drivers, or people like that. They claim that I'm lying, because I'm too young, or 'you look fine.’ Or they ask me to donate money for charities. And I'm thinking, I need the money myself.

Lauren: Yeah, it's a tough one. I know how you feel.

Sheryl: I think it happens more here for me with strangers.

I'm thankful. I think my friends and even acquaintances have been understanding so far, even if they don't really understand it.

Lauren: I think that makes a lot of sense. If people aren’t as familiar, and know how you live your life, that's makes a lot of sense. I have to explain a lot to strangers, too. It can be exhausting!

Sheryl: It used to bother me. Now, I tell them off sometimes. 

Lauren: Good for you. Because it's none of their business.

Sheryl: Yeah, I just tell them, “Do you want to see my medical files?”

Lauren: What about within the medical system? Do you think you've ever experienced any prejudice — or even perhaps privilege? Particularly in regard to your self-identity. So because you're a female in particular, going to the hospital, do you think that maybe you would have been taken more seriously in certain circumstances if you were male? 

Sheryl: No. I think the healthcare system here is pretty fair. I think because of the way our society was built, as well. We have four official races and languages here, and they've always taken care to make sure everything's more or less fair. It's a very tricky issue here, so it's always taken into account. And prejudice is something that's always looked into. I haven't experienced any of that.

My main doctor, my rheumatologist, is kind of like a dad to me.

He’s seen me at my worst 20 years ago, so I've known him for almost 20 years. I think he knows more about me than my parents! I have a good relationship with him. 

Lauren: That’s really good. What about when you were in the States? When you went to Cleveland Clinic. Did you experience anything there that made you see different levels of racial and ethnic and gender disparity? 

Sheryl: No, they were all really nice, too. 

Lauren: That’s great. That's really wonderful. Let's talk a little bit about the healthcare system then. Because you've experienced these two totally different systems. Tell us how it's working, how it's not working where you are … and from what you saw in the US.

Sheryl: Okay. Having said that, that my doctor’s fantastic, I think I still deal with bad doctors. But these are new doctors that I'm not familiar with, and doctors that I think fear more for their own reputation rather than your own health. “We don't want to operate on you because you're too risky. Or, it might ruin my reputation.” I mean, they don't say that …

Lauren: Oh, no, I mean, that happens everywhere. It’s scary that that happens.

Sheryl: And so I do encounter doctors like that. And I think I've learned to just fire them. Or doctors that just don't care; they're more interested in a certain specialization, and not your case. If you’re too complicated, they don't want to deal with you. They want something that's easier.

Lauren: It goes a bit against the Hippocratic Oath when you think about it, doesn’t it? The presence of ego there.

Sheryl: Yeah, there’s an ego, and also maybe they don't actually love the job that much. I don't know. I don't think they're evil people, but maybe they have different interests. Because I do see, for example … one psychiatrist that I fired … she treats older people really well, and then she treats me like crap. So, I don't know if she's more interested in like elderly care or something like that. Or maybe she's only interested in psychiatry disorders, and not something she can't solve here.

What she did, whenever I went in, was, “So how much medication do you want this time?” And I'm like, “It's not working. I want a solution!”

Lauren: You need to have a more personal relationship, and she didn't offer that.

Sheryl: Not really personal, but a solution. I don't care if it’s personal. It's more, like, solve my problem. Basically, work with me. Not ask me, ”Do you want to adjust your dosage higher or lower?" I'm not there to adjust my medications up and down when it's not working.

Lauren: You need a different medication or perhaps to not be on the medication and have another.

Sheryl: Yeah, I fired her. I think I've become pretty good at firing doctors.

Lauren: I mean, with 20 years of experience under your belt, I would hope! You’re obviously very good at discerning what works for you and what doesn't at this point. What about the cost of health care, too? Because you mentioned having to pay bills, compared to the money that you had to raise to go to the Cleveland Clinic. Versus what it costs you on a regular basis at home in Singapore. How does that measure out in comparison, do you think?

Sheryl: it's not cheap. My medications are the things that cost the most money. So it's about $1000 to $2000 dollars every month and it's not subsidized, because the immunosuppressants are not government-subsidized. We have a few health care schemes here, and one of it is for chronic illnesses — but lupus is not covered. 

Lauren: Well, that makes no sense! 

Sheryl: They cover stuff like diabetes, heart problems. 

Lauren: The more heavily funded chronic illnesses. 

Sheryl: I think they're working towards it, though, to cover lupus and stuff. But it doesn't make sense, because our medications cost so much money.

And the medications I need help financially with are the ones that are not covered.

And the ones I don't need help with are covered.  So yeah, $10 subsidizes nothing — compared to $1,000-subsidized.

Lauren: It's interesting, because it sounds like, in some ways, it's a similar problem that people are experiencing here in the States with medication prices. What about the care itself? Is that something that’s subsidized, too? Or is that something that you have to pay in addition to?

Sheryl: Seeing the doctor is comparatively cheaper. So it's okay. You can see your public doctor; with private coverage you just get seen faster. So I have some doctors I see privately, because the public doctors were just not good enough. Or I needed to see them quickly because I'm in emergency. And then I had to stay with a private plan after that; you can't switch back to public.

Lauren: Ooh, that’s tough.

Sheryl: So with my main rheumatologist, I'm under public, so that's good at least. He's great at helping me to get referrals and stuff if I need to.

Lauren: But it's still a challenge to pay medical bills when you're living with chronic illness. And that's an important thing for us to understand here, that it doesn’t matter where you live.

Sheryl: When my parents retire, I don't know like how I'm going to pay my bills, and stuff, too. I feel bad about that.

Lauren: So guys, hire Cheryl! She needs to pay for her current bills and her future ones!

Sheryl: (laughs) Thank you!

Lauren: Yes, of course! So tell us about your advocacy work. Tell us about the work that you do and about A Chronic Voice.

Sheryl: ...

It started when I had tuberculosis, which I caught off the streets randomly.

It was quite a traumatic year because I had to increase my steroids to body weight because the TB meds interact with them. The efficacy reduces so you need to increase it. But the side-effects are also increased.

Lauren: How long ago was this?

Sheryl: Maybe four or five years ago.

Lauren: So you don't get immunized when you're a child against tuberculosis?

Sheryl: I’m sure you can get immunized against that. But here you're forced to immunize for whatever’s compulsory. I think I was immunized, yes …

Lauren: So it was like a different strain.

Sheryl: I’m not sure, but I still caught it. Because that was a long time ago. I had to quit work. It was just too difficult to work; I just sat there and could not work. So I started the blog as something to do at home every day, because I was home every day and just stuck, going a bit crazy. And it gave me something to do. And I love to write. So that's how the blog started. It was just more for an outlet to survive being at home. And it kind of just grew organically.

Lauren: And on the blog, you're sharing your experiences, but you're also talking to other people who've had chronic illness experiences. I mean, it sort of runs the gamut, doesn't it.

Sheryl: Yeah, it's more of a broad kind of blog. It's not really focused on just lupus alone or Sjogren’s alone. I think I'm more interested in touching on, say, emotions or mental issues or pain that we all feel in some sense. Rather than just specializing in one topic, which I get bored of, personally, if I just talk about epilepsy all the time, for example. So I'm more interested in maybe the thoughts behind it, or human subjects you could say.

Lauren: And I'm sure you're also finding that there's a lot of common threads, no matter what the chronic illness. And mental health and emotional experiences. Can you share with us some of the observations that you've discovered?

Sheryl: The pain is sometimes not the worst part about chronic illness.

The isolation, the lack of support, or the fatigue … sometimes people find other things worse than the pain itself.

So these are some unexpected things. I would say. People might think pain is the worst aspect of it, but sometimes it's not. The mental health issues … I think that comes along with any chronic illness at some point.

Lauren: It’s important to really be taking care of our mental health, isn't it. If you're dealing with a physical issue, know that there's going to be a mental health component, too.

Sheryl: I think it was something I neglected for a long time, because here there's a stigma, probably, with it. And even my doctors didn't think I needed it. They were, like, “No, you'll be fine. Just be happy. Just think happy thoughts.” And that’s from a doctor. 

Lauren: Wow, that's short-sighted!

Sheryl: Yeah, but now I think the education, even amongst doctors, is changing and they're taught to refer patients to psychiatrists now as well. So that’s a good change. I guess for me it was too late.

I had to advocate for myself and insist that I needed a psychiatrist. I needed it.

Lauren: Sounds like you've been so plugged into who you are from such an early stage. I think a lot of people might not have had the same chutzpah that you did, the same moxie, to really dig their heels in and go, “This is what I need.” You seem to be very clear about that. 

Sheryl: It took 10 years.

Lauren: It took time. And sometimes it does take time, and that's okay, huh?

Sheryl: Yeah, now I’m, like, "Just give it to me.” So,10 years before I found mental health, and I think that's actually something that needs to be taken care of right from the very start. Once you get diagnosed, I think a psychologist should be on your team already.

Lauren: What about that idea of creating a team? I mean, you have your rheumatologist and specialists that you see regularly. But do you think it's important for people who are living with chronic illness to be able to curate a team of doctors, including mental health and make that accessible? 

Sheryl: Yes, it's important that all your doctors are working with you. And it's important, I think, for your doctors to be willing to communicate with each other.

Because your body's not separate parts; it's one whole body. And things overlap a lot.

So you can't just go to a heart doctor and just see what’s the problem with the heart. You have to see how it's linked to the immune system, stuff like that. And I think that's a big problem with our current health care system; they kind of divide the body into parts — brain, heart, joints. They can't figure something out, because it's all separated, But they all come together and it's much easier to solve a problem when doctors communicate.

Lauren: I think that's a very good point. So we're sort of sliding into the end portion of our interview, and I like to close up with a couple of Top Three lists. And I wondered if you could give us your Top Three Tips for fellow Spoonies and for those of us who are also living in the chronic illness world. Maybe living with a diagnosis, maybe waiting for one, maybe been in it for years like you. What are your top three tips for making this work?

Sheryl: I think the first would be … if you feel something's wrong, trust yourself — and not wait to see a doctor or whoever you need. I think even waiting one or two days  nearly cost me my life. So that was a first huge lesson I learned. Don't wait, just go and seek help. And if the doctor brushes you aside, find more help. Because the damage could be really long-lasting, and it's just not worth it. If they call you a hypochondriac … whatever. Just seek help, and find out what's wrong. Don't wait. Yeah, that's a huge lesson I learned the hard way. Second would be, I think … mental health is really important. Don't wait too long to seek help. Because all of us with chronic illness, even healthy people, face mental health issues. And you're not alone. You're not weird. You're not strange. I think it's important to even get a psychologist to guide you through the process right from the start. I think it would make a huge difference in how you manage to deal with it. In the beginning, you really don't know what to do. Yeah, you can figure it out for a while. But at some point in your journey, you will still need mental health help. And third would be to find something you enjoy doing, and just really focus on that on. On the bad days or good days. That will carry you through. For me, it's writing. I’m never bored in that sense. I can always fall back to writing. And it's not just writing, but branches that spread out from writing. For example, interacting with groups that write, or people that write. Reading blogs. These are all connected back to writing. 

Lauren: You found community in writing, it sounds like. 

Sheryl: Exactly, community. It's like a passion, but it spreads out to a community. So

I’m never bored. 

Lauren: Yeah. And it sounds like it's something, as you say, you can always turn to.

Sheryl: Whether it's private or public, I can still link to writing in a sense.

Lauren: That's lovely. And what about … this is the fun list … the Top Three things that give you unbridled joy. Now, you just mentioned writing, which is probably on the list. But despite lifestyle adjustments that you've had to make, what are the top three? These can be guilty pleasures, secret indulgences, comfort activities … three things that you turn to that make you really happy. I have some predictions as to what these will be! (laughs) I feel like birds and writing are on this list! Because if you guys follow Sheryl on social, you'll see she posts about her birds — which are beautiful, by the way. I occasionally watch animal videos, and it's the odd video that will be a cute bird one. But your birds are super chill. So whatever you're doing as a bird mom, it’s working! (laughs)

Sheryl: Well, they poop all over me, a lot!

Lauren: (laughs) You have to be okay with the poop!

Sheryl: Yeah, one of them likes to sit on my shoulder while I'm working, and he bites my ear. He wants head rubs all the time. It’s is quite painful. But he's cute. We raised them as babies.

Lauren: Are they are on the list, though, birds? Are they on the list of three things that give you joy? 

Sheryl: (laughs) No.

Lauren: They don't make it to the Top Three? That's okay. I forgive you! (laughs)

Sheryl: Let’s put it this way.

I have only two passions in life: travel and writing.

So since we need three, we'll put the birds in! (laughs)

Lauren: (laughs) There we go! That does it.

Sheryl: Honestly, I would love to have a dog, but I can't afford it. I would like something I could hug with my whole body, if you get what I mean. 

Lauren: A bigger bird!

Sheryl: No, no, they have huge beaks! And they're expensive. You’re looking at a few thousand dollars for them. I love my birds, don't get me wrong! They’re like my everyday companions. They give me emotional support, and they love to sing along to my music. So it's fun.

Lauren: But travel and writing are the main things.

Sheryl: If I weren’t sick, I think I would really love to be a travel literature writer. I think even when I was sick, at 24 also … that's how I discovered I had my heart problem …while I was traveling on a train through the Mongolian desert. Trans-Siberian railway. I couldn't breathe. And I was, like, probably it's the dusty air. But actually, it was my heart collapsing. That's how I discovered it. So even with my health problems, I was actually traveling to pretty remote places — because that's what I love to do. And I had to make a choice. Either I go and take the risk, or I don't go at all.

Lauren: So travel is certainly changed for you now, your relationship with it?

Sheryl: ...

I still love going out to really remote places, places with beautiful scenery, with interesting culture.

I just go with lots of preparation, and try to find a travel companion if I can, and go through the protocols with them. Like, if I pass out, what to do. Because some of these places have no hospitals or transport. I would say the only change is finance; I don't have money to travel as much as I used to. Otherwise, I wouldn't let that stop me either, I think.

Lauren: Yeah, I think it's really vital that you still be able to do the things you love. And that's a really tough one, because it's expensive, and as you say, takes all this preparation.

Sheryl: So I kind of reason with myself … like, anyone could die crossing the street, you know. I try to reason with myself.

Lauren: Yeah, to justify whether a trip is worth it for you. But I think it's so smart, bringing a travel buddy along, having a friend with you. Because you can create experiences with them, too, and memories. But knowing that you have someone with you who knows what to do.

Sheryl: Well, I was going to travel alone. I mean, it was either do it or don't do it. But my mom was so worried that she forced my dad to follow me on one trip. So he had to tag along for a month! Which was a bit tough. But it still worked out. I mean, it's still safer to have someone with you all the time, if possible.

Lauren: But it is certainly a challenge, I think, being an adult and being more tethered to your family. Whether that's because of your health needs, or financial needs, or both — or even more. It can really cut into your independence.

Sheryl: I live with my parents, and I feel like a teenager half the time. It’s an Asian thing as well, because you're never really a grown-up to them. Even if you're 60, and they're 80, you're never really grown up to them either. So it's a slightly cultural thing as well.

Lauren: Is there anything else you'd like to share with our listeners about who you are and your work, and all of your experiences?

Sheryl: No, I don't think I can think of anything.

Lauren: We covered it all, huh? And very important … can you tell everyone where to find you?

Sheryl: Yes, you can find me on my blog, AChronicVoice.com. And from there, you can access all my social media as well.

Lauren: Wonderful. And we'll link to that on the website page for this episode as well.

Sheryl:  Well, thank you! 

Lauren: Sheryl, It's been such a pleasure chatting with you today. I'm really pleased we were able to do this.

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