Episode 134: Sara Naveed is Fabulous & Fatigued

Episode 134: Sara Naveed is Fabulous & Fatigued

Overview

Sara Naveed is a Canadian writer, chronic illness advocate, and founder of the blog Fabulous and Fatigued. 14 years ago, she was diagnosed with fibromyalgia following a hit-and-run. Inspired by her experience, she started the blog with the aim of creating awareness and ending the stigma of life with chronic illnesses. Her work has been published in various media outlets and platforms including Yahoo, MSN, The Mighty, The Tired Girl Society and DPC Education Center.

Takeaway

Transcript

Sara Naveed Fabulous & Fatigued fibromyalgia Uninvisible Pod Chronicon

Lauren: All right guys, thank you so much for joining us. I am here today with Sara Naveed. Sara is a patient advocate and writer, and founder of the blog Fabulous and Fatigued. She lives in Canada, with fibromyalgia. She's going to talk to us all about that today. Sara, thank you so much for joining us! 

Sara: Thank you so much for having me. 

Lauren: Oh my gosh, it's such a pleasure. We've been in touch for a while, thanks to the lovely Nitika Chopra. 

Sara: Chronicon!

Lauren: I know, Chronicon! So let's start from the beginning of your story, because I would love for you to share with our listeners when and how you first realized something was going on physically, got your diagnosis, and how you have managed your health since then.

Sara: My story at the time that it started, there weren't a lot of conversations about chronic illnesses or mental illnesses at the time. It was very stigmatized. This is a good 13 years ago. And it started with an accident, actually. I was hanging out with a couple of my friends outside in our school playground. We were sitting on a curb. And I fully remember a car driving into the school parking lot. And I turned around and said, “That guy is driving really fast. He shouldn't be driving that fast in a parking lot, specially.” We were about to head back inside. So the rest of my friends got up from the curb. And as I was about to, I hadn't yet unfortunately … I guess things were just meant to be the way that they happened … he came and he hit me on my back. So I fell off the curb. At the time, I was absolutely flying. I got up. I went and told my friends about it. In fact, I went into my math class, and I happened to be the first person there. I loved my math teacher and I loved math, so I went to him. And I told him the story as a joke, because I thought it was funny that a car hit me on my back and I was still walking around, you know! As soon as he heard that, he told me to go to the office downstairs.

I didn't want to go because I was one of those students who was a nerd, never went to the office. No trouble, none of that stuff. 

Lauren: Let alone missing class, my goodness!

Sara: Exactly! So I remember he sent someone downstairs with me, I was practically forced to go. 

Lauren: Time out here … this guy who hit you … did he just keep going?

Sara: He hit me, and he came out, he did ask me if I was okay. But he had a passenger in the car. He asked me if I was okay. And the driver told the passenger who happened to be his friend, I guess, “She seems to be fine. F*ck it, let's just go.”  They got in the car and they left. The driver was actually someone that went to my high school. 

Lauren: Oh, wow. 

Sara: I was in grade 11 at the time, and he was in grade 12. And it happened on school premises. So when I went into the office, I didn't know his name or anything, I hadn't seen him around too much. They opened up the yearbook for me and told me to point out who it was. But I remember when I told them, everyone was very shaken and scared. And I was confused because here I was, walking around, nothing's broken. There's no blood. I just didn't understand because I guess at that point, my concept of illness was just anything that's visible. I think that's so funny on its own, that everyone around me, said, “Hey, go call your parents.” They called the cops. They called the ambulance. And I'm sitting there really confused. I think I was maybe 16 at the time. 

Lauren: Well, you were in shock, it sounds like. 

Sara: Yeah. They were asking me all sorts of questions. After answering all these questions that the cops had for me, they took me to the ER, and I went home that night thinking I was going to be fine the next day. I had no clue that my life was going to completely change after that day. I remember a couple of days after, I was still in pain, and I didn't understand why. So I ended up going to the ER again. I sat there for a good eight hours. And same thing. They looked at me, everything seemed fine. Doctors didn’t know what was happening, you know? 

Lauren: Did you consider, at any point up to the stage, pressing charges against this guy? 

Sara: He didn't have insurance. In Canada, basically how our system works is you get a G1 … you’re given a written test, and you get a G1 then you have to get your G2 … and you have to wait a year between the two, by the way. Once you have your G1, that gives you permission to actually start driving and start learning. Obviously not driving on your own, but just to start learning. 

Lauren: The equivalent of a learner's permit here, it sounds like. 

Sara: Yes. And then you get your G2, and then you get your G. So he basically only had the G1, which is the equivalent of a learner's permit.

He didn't have an actual license. So I couldn’t press any charges against him. I had to sue my own insurance company.

Lauren: Oh, boy, and this is where it's like, insurance is so broken, right? Because you have to sue the insurance company to get coverage, because you're not going to get any coverage through that guy. I suppose that's why it's good you were insured through your family, it sounds like?

Sara: Yeah, how it works is if you’re a dependent, even if you're not a driver, you basically end up suing whoever you're dependent on, their insurance. I didn't have a driver's license at the time. So I ended up suing my dad's insurance company. Afterwards, I started my physiotherapy, I started massage therapy, I was taking painkillers on a daily basis … and just completely confused and lost, and hoping that I was going to be fine. Once I actually sued my dad's insurance company, they sent me to a specialist; I guess, because they wanted proof, they didn't want to believe what was happening.

Lauren: Of course not. They don't want to pay for it. 

Sara: Right. So they sent me to the specialist. And that’s, I think, when my life sort of turned around. Actually, I forgot to mention the point where … before that happened, my parents and I, every few months, would always end up at my family doctor’s office, trying to ask what was happening and why I wasn't getting better. And she didn't have an answer either. So she first sent me to a specialist. This specialist also just gave me painkillers, and sent me back home. A few months after, we were back at that same place, asking my doctor … what the f*ck is happening. And that's when my family doctor decides to pull up the reports that the specialist had sent her. And she tells me that I have fibromyalgia. So my doctor had these reports for a while, didn't bother reading them, didn't bother telling me. 

Lauren: Wow. 

Sara: Yeah. So I found out a few months later. I had already been diagnosed … I just didn't know.

Lauren:  Why?? That's one of the things that happens in the moment, and how do we think to even question the doctor in that moment because it's shocking enough that you're getting life changing information. But did you look back at that and go, why didn't I say to her, “What the hell??”

Sara: I think that now, to be honest. At the time, it was all too much. I think that at the time I was literally sitting there going, how do I even say this word? How do I even spell this word? It was … oh, great, so now I have an illness that I'm stuck with for the rest of my life. I just had tears in my eyes, and I was constantly crying, because up until that point in my life, I thought I was going to be okay.

And again, I looked at myself in the mirror, and I still didn't have the concept of a chronic illness or an invisible illness. I thought I was going to be okay, sooner or later.

So that happened. And that's why the insurance company sent me to the other specialist, to make sure that I wasn't making things up, that I actually did have fibromyalgia. And that was very life-changing for me, because the doctor realized how much pain I was in, how horrible it was. Because at the time, I couldn't even sit for more than a few minutes; I couldn't stand, I couldn't walk. It was really bad. So he suggested certain things that could help me with my fibromyalgia. And then I went back to my family doctor, and said, “Hey, you've been telling me that there's nothing I can do. This is what I have to live with for the rest of my life. And I just have to take like 10 painkillers a day, or something. But this specialist just told me I can take this medicine and that medicine and that medicine, and it can improve my quality of life.” I was like, give me anything, as long as my quality of life gets better. Because it was horrible at the time. Not even being able to carry my backpack, I remember. I had amazing friends in high school; I could never pick up my own backpack, they had to carry my backpack for me. So the tiniest little things, at the time when most people are thinking about graduating and going to prom, going to university, which university they were going to get into … I was completely occupied with the pain that I was in. And the fact that I went from being a 90 student to an 80 student, because of all the pain that I was in. I would barely go to school; I would go to school, a maximum three times a week. 

Lauren: What about, also, the mental health side of this? Because it sounds like there wasn't much interaction between you and the guy who caused the accident, too. Was that something like a hard pill to swallow and something that you had to work through, too?

Sara: I actually saw him on a bus once, later. And it was just weird, because I remember looking at him thinking, this guy has no idea that he has completely changed a person's life. And those are the things that really make you think. People text and drive, thinking it's not a big deal. They’ll hit someone; they don't deal with that person, they continue dealing with the insurance company. They barely get to see the person that they hit, usually, in the other car. And it could be because of your stupid mistake. Or, you not putting away your phone … that somebody else's life has just gotten worse. In terms of the mental health, to be honest, for the the longest time, I didn't even know that I was depressed. I didn't know that I was getting anxiety. I didn't know what depression meant. I didn't know what anxiety meant. Those are things that came maybe four years or five years later. The realization that there's another aspect, that there's that whole mental health aspect to it. Like I said right at the beginning, these weren't things that were spoken about back then. Nobody spoke about depression or anxiety. So even if I was feeling a certain way, I didn't know to call it depression or anxiety. I didn't know anyone around me. There was no Instagram. I didn't know anyone that was speaking about it. Nothing on TV that covered it. So there was no way for me to know. All of that came much, much, much later. Even when it did come, it was really hard-hitting in the sense that nobody believed me. So even when I would say, “I'm depressed,” or, “I have anxiety” … I would get told that I'm being dramatic.

Lauren: What about doctors? Did they believe you?

Sara: I didn’t speak to my doctor about it at the time.

Lauren: Yeah, because you were looking at your body in silos, the way the medical institutions do.

Sara: Yeah. So I've come such a long way, when I look back. So many things have changed for the better, obviously. So many conversations are happening now, that never happened back then. It makes me really happy that these things exist now. Because I look back at how lost I was, how isolated I was at that time. I didn't have a single person around me who understood or spoke to me about it. It's nice to know that now if someone finds themselves being in that place, they can just go on Google, type in a fibromyalgia blog, fibromyalgia Instagram. Or another will pop up, and they can message someone and talk to someone. I didn't find anyone. The first time I spoke to someone who had fibromyalgia was three years ago. So I literally spent 10 years of my life all by myself surrounded by able-bodied people. Who were amazing. Don't get me wrong. I love them with all my heart. But none of them understood what was happening. When I spoke to the first person that had fibromyalgia, I cried for three, four hours. My parents were looking at me, wondering what happened. 

Lauren: Why do you think you cried? Was it because you felt seen? 

Sara: Yeah. Because for the first time in my life, I didn't have to tell someone … this is what I'm experiencing. The other person was asking me, “So hey, does this happen?” And I was like, oh, my God, yes. And then they asked me, "Okay, what about sleep? Is your sleep disrupted?” Oh, my God, yes! All these things that my doctor should have spoken to me about, but even my doctor didn’t.

So yeah, it was just very overwhelming — in a beautiful way.

Lauren: So what does that look like in terms of treatment? When did things begin to shift, where you started seeking the mental health support and connecting more to the community?

Sara: I would say the mental health aspect of it came maybe six years ago. For a good seven years, I didn't seek any help. Again, even if there were things available. For example, in university, there are counselors available. I didn't have the knowledge that there were counselors available. I didn't know that there was such a thing as accessibility services that you could go to, and they could help you if you miss your classes. If you need notes. I used to walk into my exams with a pillow or cushion, because I couldn't sit on those hard chairs. I found out in my last year that I can go to accessibility services, and they can set up my exam in a separate room where I can take breaks, and I can get up and stretch. And that I could be given extra time for the exam because of all the brain fog and the fact that I was fighting through pain while I was writing my exam. I didn't even know. I was a lost puppy for the first five, six years, seven actually. And then slowly and gradually, within the last six years, I started seeking support. Going to accessibility services. And my marks improved like that — because I finally had the help that I needed. It's really sad because halfway through university … because I was an A-plus student, right, and all of a sudden, I'm struggling in university. People are already struggling, obviously, because it's a big jump from high school to university. But it was an even bigger jump for me in the sense that I was navigating a completely different life, trying to get used to it, grieving the old life that I had, and getting used to so many different changes, things that I can no longer do. I used to think back then that, for whatever reason, I'm not smart anymore, or that I've become dumb. And now when I look back, I tell myself … no, there is no such thing. It's just because you were struggling so much, and you needed that help, and there was nobody to help you. If you went to accessibility services in your first year of university, you would have been that great, amazing student all throughout. If you went to that counselor right away, same thing. These are things that I did in my last two semesters. How sad is that?

Lauren: It’s not sad, because if it's not being talked about, if it's not being advertised, how are you to know?

Sara: Yeah. But it's just sad that my life could have been a lot easier. 

Lauren: That you had to struggle that long. 

Sara: I struggled for so long. I would have exams back to back. I remember having an exam at 9am, then I remember having an exam at 7pm the same day, and then having an exam the next day at 9am. I don't even get sleep, right, because of my fibromyalgia. I can't sit for long periods of time. Anytime I'm stressed, I'm in more pain. I don't know how I went through doing three exams back to back like that. When I went to accessibility services, one of the accommodations that I got was I could only write one exam per day. It helped so much. So, I really wish that these services were talked about more; I think they are talking about them more at this point. But back then, unfortunately not.

Lauren: And what about the therapies to treat the pain? Because it sounds like once you found that doctor through the insurance, oddly enough, you were offered different therapies, rather than … here's a handful of painkillers. Have you gotten to a point where you're managing your pain on a day-to-day basis?

Sara: He suggested some things. Before I went to him, all my family doctor ever did was give me painkillers. He suggested medication that was actually under best practice guidelines for fibromyalgia. There are certain medications … even though there aren't specific medications that are for fibromyalgia, there's certain medications that still work for fibromyalgia and for the nerve pain. There's certain depression medications; there’s one for epilepsy, I believe, that actually works for fibromyalgia. He made those suggestions. So my pain was more controlled on a day-to-day basis, rather than … oh, I'm in pain? Let’s pop a painkiller. I'm in pain again, let's pop a painkiller. So it was more so that, because my family doctor didn't even have any knowledge about that. Or never bothered looking into it, whatever the case was. So there's that. At this point in time, I would say, it’s been 13 years now so I've really gotten to know what works for me, what doesn't work for me.

The things that I do that will make my pain worse, things that I could do to make it better, how to push through the pain.

I shouldn't be sitting on the ground for a long period of time, it'll hurt my back. I need backrests at all times. I can't sit on any hard surfaces. There are just things that I realized through a lot of trial and error over the years … that if I'm getting ready, I should sit and do my hair, or do my makeup, because that way, I am saving some energy.

Lauren: Sounds like you've been taking holistic approaches, really, to your pain management.

Sara: Yeah. I'm still obviously taking medication. But at the same time, I think that is not enough for me to have a good quality of life. So I did start seeing a naturopath a few years ago as well. And that definitely helped. Again, this goes back to my family doctor … I think that a lot of doctors know how to treat acute conditions, but a lot of chronic conditions, there’s no fix-it-all medication for it or treatment for it. It requires an overall approach. Medication, your lifestyle, the way you eat, exercise, everything is a part of it. Because there's so much fatigue and insomnia and depression and anxiety, making sure your hormones are balanced or making sure that you don't have any vitamin deficiencies. And so those were things that I discovered through my naturopath when she did a really thorough blood test for me. Which I had to pay out-of-pocket for, which I could have ordered to my family doctor — but she didn't want to for me. 

Lauren: So you kept seeing her, this family doctor?

Sara:  I changed my family doctor. Things have definitely gotten better. People keep telling me I need to change my family doctor again. But we'll see. I still really struggle with standing up for myself or advocating for myself. For example, this blood test. I paid out of my pocket, and it's covered under OHIP. The only requirement is if your family doctor orders it. OHIP is Ontario’s health insurance plan; that’s what it stands for. And so I paid for it out of my pocket. It's been about a year-and-a-half since I had that blood test. Which was an eye-opener, by the way, because everything was off. I would have never known had I not gone to her, because my family doctor was never going to do that blood test for me. For me to get another blood test done, I have a doctor's appointment next week. Let's see if she ends up doing it for me this time, or if I'll have to pay out-of-my-pocket again. I really hope that … fingers crossed … she’ll be ordering it for me this time.

Lauren: You mentioned the advocacy side of things here. And obviously in sharing your story, you are becoming an advocate and stepping more into that role yourself. But I'm curious to know whether you leaned more on friends and family as your advocates, once you got this diagnosis? Going through the process of finding treatments that worked and dealing with these family doctors, is there anyone in your life who stands out to you as the person that you've turned to who's been your advocate?

Sara: The only person that I can think of at this point is my really good friend. His name is Moses, he will eventually be listening to this. Hi, Moses! I feel like he's one of those people who really watches out for me in the sense that he comes across. He is a nurse himself, so if he comes across any new medication or any new treatment, or … “Hey, I heard this doctor is really good for fibromyalgia.” I mentioned I spoke to someone who had fibromyalgia, three years ago; he connected me to her actually. He happened to be taking a course, and she was the prof. And she mentioned having fibromyalgia. So he walked up to her and told her that he has a friend who has fibromyalgia. And if it was okay for him to connect the two of us. So I feel like he has been doing that for me for years and years. I feel like he's always watching out for me. Anytime anything comes up, he’ll give me a call and be, like, “Hey, I came across this.”

Other than that, it’s sadly been a struggle with most of my family, up until a couple of years ago, I would say, in the sense that they never understood what I was going through.

My pain was constantly diminished. And like I mentioned before, they thought I was being dramatic. Or, the entire concept of toxic positivity, where … “Hey, you know, there are other people out there who are living a life that's much worse. You should be thankful for the situation that you're in right now.” 

Lauren: That you could be worse!

Sara: Exactly. And so if I can think of anyone that has really helped me walk through that journey, it would be him.

Lauren: What effect you think that's had on your relationships? Do you think that getting sick and having your pain diminished by your family has distanced yourself from them in some ways? And on the flip side, that you've deepened your relationship with people like Moses when they've been able to step up for you?

Sara: Yeah, so … this brings up a lot of hard stuff …

Lauren: Yeah. I mean, I totally get that.

Sara: Yeah. It's a really weird place to be in, because that's when you want to lean the most on your close family and friends, your immediate family. But, you know, when your pain is diminished by them, where do you even go? So, looking back, yeah, my relationship with my family was not good. It's definitely gotten so much better over the past few years. But at the beginning, nobody even wanted to accept the fact that I had fibromyalgia, because it was a lot easier for them to pretend like I was completely okay. Each time I would say something, they would just say, “You're fine.”

Lauren: And that's probably because it's invisible? 

Sara: Yeah, I sometimes felt like banging my head on the wall, because I felt like nobody was hearing me out. I wanted to scream. And tell the world things. But nobody believed me. Things really started changing when my older brother got married. His wife is a doctor, and that just completely changed things. Then after that, my younger brother also got married to a doctor. So having two doctors in the family is super helpful. Because they understand, and at the same time, they can make other people understand. So it's not just me saying these things. Now, it's a doctor telling them this is what happens. 

Lauren: They’re validating you. 

Sara: Yeah. I'm thankful that they started believing these things, but I just wish they believed all those things when they were coming from me. But they needed someone else, a doctor, to say those things to them. Our relationship has, thankfully, gotten so much better. We're at a really great place right now. But for the first 10 years, up until this big change happened in our family, things were bad.

Lauren: And your relationship with Moses, you think has also been deeper because he's been there? 

Sara: 100%. When it feels like everyone else has turned away from you, but there's that one person, or two people, who actually listen. There’s not much someone can do for you. But listen, practice deep listening … or not diminish or dismiss your pain.

Even just having someone do that for you feels like the world. It feels like heaven.

And definitely my relationship with people that are more understanding towards this aspect of my life has gotten better and deeper because of it.

Lauren: So what is a typical day looking like for you now? You've been living with this diagnosis for 13 years. You have, it seems, in many ways, mastered self-management. So how are you balancing the demands of life and work and your relationships and your body, as you're managing potential flares and symptoms?

Sara: I read something the other day that really resonated with me, and it went something like this … I might be butchering it, I hope not … but it basically said that we're surrounded by plastic balls and glass balls. And if a plastic ball falls, that's okay, because it'll bounce back up. But if a glass ball falls, it shatters. So I feel like my life is constantly figuring out which balls are plastic and which are glass — and then prioritizing the glass over the plastic balls. At the same time, I feel like it requires the people around me to also be understanding and know that if I'm not there for them, and I'm not there to pick up their plastic balls, that I will definitely be there to pick up their glass balls. And the reason that I'm not there to pick up their plastic balls is probably because I'm picking up glass balls somewhere else. I don't know if that makes sense. 

Lauren: It makes total sense. It’s like you’ve got to sort of packing peanut your life, don’t you.

Sara: Yeah, it was such a nice analogy. And I was, like, oh, my God, I'm definitely using this!

Lauren: It’s also about prioritizing, isn't it. You’ve got limited energy; you've got limited mobility in the sense that there's only so much your body can do. So you do have to prioritize the stuff that's at the top of the list. You might not get to the stuff at the bottom of the list, but you're putting your energy into the stuff that’s important. 

Sara: Exactly. I feel like even just as an adult, with everything that people juggle, some glass balls fall at times, or some plastic balls fall, and you have to be okay with it. Then you add a chronic illness to that mix, and it complicates things even more, obviously. So I have to constantly tell myself … it's okay if some of those balls fall, it's really okay. So just being kinder to myself, and constantly having to tell myself that. Also, at the moment, because of the pandemic, obviously, my life looks a lot different than it usually would. But when I used to work full-time, and come back home, I remember doing things like making sure I'm napping during my commute. Because I cannot get through a full working day without naps. So I would nap on the train to work. I would nap on the way back from work. And I would also nap during lunchtime.

Each time I went for an interview, I’m literally looking around trying to suss out the place to figure out if there's a place I can go and nap during lunch!

At times I’ve had to sit on the couch in the lobby and take a nap over there; it requires you to be shameless at times.

Lauren: But also if those accommodations aren't being readily made, you're doing what you’ve got to do to take care of yourself. 

Sara: Exactly. 

Lauren: You mentioned, also, some of these situations where people wouldn't believe you, when your family didn't believe you. Can you talk to us about any of those situations — specific events that may have occurred, where you had to validate the existence of your diagnosis to someone who simply couldn't understand it because they couldn't see it. Be that a family member or a friend, perhaps even a colleague?

Sara: I can't think of a specific situation right now. But it's been quite a journey in the sense that I remember, at the beginning of my diagnosis, I actually wanted to justify my illness to people — but nobody would listen to me.

And then I went into this space where I wanted to justify my illness to people, and people would listen to me, but they just wouldn't empathize.

Or they just wouldn't know how to put themselves in my shoes. And I went to a place, which is where I'm at right now, where I just don't care to justify my illness to anyone. And I feel like it's such a great feeling to be in that place. Because the first space was painful as f*ck. Nobody even believing you, and telling you that you're completely okay. And then the second phase where you're getting blamed for things that are not in your head, like, ‘Hey, you disappeared for this long when I actually had a flare-up, and I didn't have the energy to chit-chat. If you were going through something major that you needed my help with, sure, I would most definitely be there for you. But if it's just chit-chatting, meeting up for fun, I cannot do that.’ 

Lauren: Plastic balls and your glass balls! 

Sara: Exactly. I've had people tell me I walk in and out of relationships whenever I want. I've had people tell me that before I am about to disappear, that I should let them know. It feels like it's work, you know; you've got to call and let them know I'm calling in sick. So you pick up the phone and let people know, “Hey, this is happening.”

Lauren: Those are all examples that I think a lot of people can relate to! It's amazing the amount of forethought that people expect you to have when you're a Spoonie. I can't tell you when I'm gonna flare. It starts happening, and it's too late. There's no buffer time for me to warn you. If I had a warning system myself, I'd be able to stave this thing off. But it happens when it happens!

Sara: And the worst is when they tell you, “Hey, it's not your fault. It's the illness.” 

Lauren: But yeah, believe me the rest of the time.

Sara: Hold on a second. So you’re blaming me for something that's not in my control? And also, do you not think that I only have enough complaints myself — like, I don't have the ability to do this or that, things that other people do. Things that ableist bodies are able to do. I already have those complaints with myself. And now you're adding your complaints to that. Is that even fair? But I'm really, really, really happy and satisfied with where I am right now … in the sense that it took a long time, but I think it was the realization that … okay, this illness is something that I have to live with for the rest of my life. And my body is my home, and I have to respect my illness, I have to respect my body, I have to respect my home. And if you can't respect it, and if I'm saying something and you just choose not to listen, then I can choose not to have you in my life. 

Lauren: Sounds like you've gotten to a place of self-possession in that sense. 

Sara: Yeah. And that feels nice. 

Lauren: What about within the medical system there … I know that you get health care, that it’s considered a human right in Canada. But within your care plan, have you had moments where you've experienced undue amounts of prejudice, or maybe privilege, because of the way you present? Because you are a woman going into the medical system. You're a woman of color, going into the medical system. Do you think some of the experiences you had may have been different if you presented differently — perhaps if you were a white woman, if you were male?

Sara: I believe I've actually experienced both. Prejudice in the sense that my family doctor is actually also a woman of color, and we happen to practice the same religion.

I've had my family doctor tell me that I should just get married, and that would solve all my problems. 

Lauren: Oh, boy. 

Sara: And I think that that is deeply rooted in the fact that I'm from a South Asian background. It's fact that in South Asian culture, girls while they're growing up, are taught how to — typically, you know, I'm not generalizing, but that’s how it used to be at least — they’re taught to cook and clean and how to take care of the household, and knit.

Lauren: You’re trained to be a bride. 

Sara: Pretty much. And so that thought process, even though we've come a long way and women have their careers now, at the end of the day, marriage is supposed to be the goal.

Lauren: Also, I'd like to know how that would make all your pain go away. Not even scientific, doc!

Sara:  Exactly! But I think it's moreso the entire … if you get married, you'll have a husband to take care of you. You don't have to worry about finances. I think it came from that point-of-view. And then also just the fact that I'm Muslim, and she's also a Muslim, so because of that, I believe certain treatments that would actually benefit me were not even brought up to me. Like, for example, CBD oil was not brought up to me. And it happens to be the best treatment for some of my symptoms like insomnia, anxiety, chronic pain. I sincerely think that if I was not a woman of color, or a male, that that suggestion would have come up. But in this case, I have to bring it up. And so those are sort of, I guess, the different ways that …

Lauren: … that bias has shown up.

Sara: Yeah. But then also, I would say there is some sort of privilege in the sense that we're from the same background. The same culture, she sort of understands the dynamics of it. And so it helps in that aspect. 

Lauren: Yeah. it's a little bit of both. A bit of push/pull. Absolutely. You've probably heard lots of stories of other people in the medical system. And I'm curious to know, given what you've heard, what your experiences are. Would you say that some of these stories that we hear about — racial, gender, sexual identity inequity in the healthcare system — are tantamount to their own public health crisis? That these biases that are playing into people's experiences are a public health crisis of their own?

Sara: Because I haven't personally experienced that myself, I don't think that I can speak too much about it. However, the one thing that I could think of off the top of my head is the fact that I can speak of the immigrant experience. The language barrier. A lot of times immigrants come that are not fluent in English or French. And when they go to doctors, by law, the translator is not required to be present. And when a translator is not required to be present, obviously, the doctor is not understanding the patient, and the patient is not understanding the doctor. So a lot of times, the patient might not be able to fully express what's going on in their body, what their worries are. And so, a lot of things are overlooked because of that. At the same time, the doctors, in turn, obviously, might be recommending things that the patient is not understanding. So there's that entire barrier when it comes to language. And not just language, in terms of the words spoken, but also just the cultural context of it. When we talk about pain over here, we talk about a stabbing pain or an achy pain or burning pain.

I remember when I got into my accident, and I had to go see a doctor and they asked me all these questions, I was so confused.

Even though I fully understood English, I didn't know how to describe the pain. And now I know, because I’ve lived with it for 13 years, so I'm very well able to explain what kind of a pain it is. But if I had trouble explaining that, or pinpointing what kind of pain I was experiencing, I wonder how someone who doesn't understand the language would communicate. Because different cultures and different languages could be expressing pain in different ways.

Lauren: I think that's a really salient point. Talk to us a little bit about the Canadian healthcare system. How is it working for patients? You mentioned earlier the acute care experience versus preventive, and chronic pain. And in what ways is it falling short and requiring improvement, do you think?

Sara: Obviously, it's amazing that there's accessibility, right? Anyone and everyone is able to get access to health care. But most of that, as I mentioned, it works perfectly for the acute conditions. And it becomes problematic when it comes to chronic conditions. The reason for that is that our resources are limited. There’s a quota on the number of doctors there are, which means that the time that they spend with each patient is also limited. Which means that they can really sit with a patient for five minutes or 10 minutes. And things that are a lot easier to understand … “Oh, you have a migraine? Cool. Here, this is the medication you can take.” Versus matters of the body, of pain, that are much more complicated … they require a more in-depth conversation, or they require, for example, even with fibromyalgia, you have to be diagnosed. It is a process of elimination. So it requires the doctor to do a whole bunch of tests, instead of just doing one blood test and saying, “Hey, you have fibromyalgia.” That requires a very in-depth analysis. And that is usually missing. Also, a lot of times, there's very long waits. I know that I can walk into my family doctor's office and say, “Hey, I need to see a dermatologist.” And I will most definitely see that dermatologist. But it might be 10 months later. My mom actually had rosacea, and by the time she had her dermatologist appointment, her rosacea was almost gone. We had researched the Internet like crazy, and had figured out what cosmetic products she could use that would be helpful. She did all of those things, and to a large extent her rosacea had gotten better. SoI believe when it comes to the wait times, it falls short over there. Also just the fact that I believe people that work in the healthcare system, and that applies to every country … most of those people are desensitized to our illnesses. That's understandable because they can't be carrying all that trauma home. It's a lot. However, people need to find a middle ground. And I think that that is missing a lot of times.

Lauren: Like bedside manner, you mean? Yeah, that's interesting that you bring that up, because I know that it's a part of a lot of medical training, but it seems not to be adequate anywhere. And sometimes it's just a personality. It's someone who's an active listener and can do empathy.

Sara: Exactly. And if you're a doctor, it's not just about empathy, because after empathy, there's another step that's required — which is taking action. However, a lot of times, since that empathy is not there, there's no action either. 

Lauren: It's becomes not priority. 

Sara: Exactly. I really think that a lot of times people get ignored because of that. So, having empathy is super important.

Lauren: Yeah, from a caregiver perspective, whether you're a medical professional or otherwise. So let's talk about your advocacy work. You've got a blog, and you've been starting to do some public speaking and stuff. Obviously, you're telling us your story here on the show today. Talk to us about what inspired you to get started with this work, and how it's impacted your own healing journey.

Sara: Honestly, when I look back … I've been mentioning all throughout the past few years, things have really changed for me in terms of finally my family being very understanding and having understanding friends. Me knowing myself better, knowing how to take care of myself. So it’s gotten a lot better over the past few years. But before that, when I look at Sara from 13 years ago, or Sara from six years ago, that versus the person that I became once I started my block … huge difference, huge difference. It's been such a healing process for me.

I think that the most amount of healing that I've had and the most amount of actually understanding myself at a more deeper level has only happened ever since I started my blog.

Lauren: Do you think writing it sort of pulled it out of you and allowed you to place it somewhere outside of yourself, to be able to objectively look at it in a different way?

Sara: 100%. But also, it made me more open to having more conversations about it. I would never talk about my chronic illness, it would never become the topic of discussion. I find myself talking about it a lot more now. And because I have a blog, people talk about it, people ask me about it more. Rather than before when most people didn't know. Most of my friends didn't know that I had fibromyalgia, most of my extended family didn't know that I had fibromyalgia. I remember, when I hit that Publish button for my website, I was so nervous, because it was the first time that I was telling the entire world that I have fibromyalgia. And this was just last year. So before that, my cousins didn't know. My aunt didn't know. Some of the closest people in my life didn't know. And I think that the reason that I really was and am passionate about this is because I look back at the Sara that was lost and confused when she got diagnosed, when her pain was diminished, when her mental illnesses were diminished. When she was constantly fed toxicity. She was so alone, she was isolated, and I really wanted to do something for her. And for anyone else that's in that situation. So it was something that I had been thinking about for years and years — that I want to help people that are younger, in their teenage years or in their 20s that have fibromyalgia or any other chronic illness, an invisible illness. Because I realized that I was taking up space in places that were not used to having people with chronic illnesses and invisible illnesses. That everywhere I found myself, everything was designed around ableist people. There were accommodations present, but all those accommodations were only present for people with visible illnesses. The simplest example is after my accident when I had to get on the bus to go home. There were seats available for old folk or for people with visible disabilities. I had a right to sit on that seat. But every day I questioned myself if I could sit on that seat because of the sign that was up there. And I thought to myself, these people are gonna think, what is the 16-year-old doing here? She's absolutely healthy. Why is she not getting up when this older gentleman just walked on the bus? 

Lauren: You’re talking about the signs that have wheelchairs, people using mobility aids? 

Sara: Yes. That was the very first dilemma I remember I had after my accident. That was the first time I realized there's nothing that’s been put in place for people that have invisible illnesses. So I would dread my half-hour-long bus rides, because, as I mentioned, I couldn't carry my backpack while I'm going home. My friends are not going to go home with me. They carried it at school the entire day. But having my backpack on my back, and then having to stand when I couldn't stand for longer than 5, 10 minutes. That's when I knew that I really had to do something. And I really had to help people, and make people realize — people that are just newly diagnosed with these illnesses — that they're not alone, that there are people out there that will hear them out.

I want people to know that their life does not end when they get diagnosed.

Because that's how I thought at that time, that was my thinking process at the time. I want them to realize that, yeah, there might be certain things that they're limited to, but there's so many other things that they can still do. Provided they’ll have to work around it a bit. They can’t be partying for 10 hours a day or something, but they can still go partying for an hour, for example. There are adjustments that you have to make, but you can still live a normal life. So that was very important for me. And the second thing that was very important for me was through my advocacy work trying to make allies of people that have chronic illnesses, who understand what's going on with us— because again, I didn't have that. Those are the two things that I really want to achieve through all the work that I'm doing. Because I think it just goes back to what I was missing in my life at that time.

Lauren: I'd love for you to give us Top Three Tips you have for people who suspect … maybe there's something off with them. Or maybe they're diagnosed with fibromyalgia like you. Someone who's living this invisible chronic illness life. What would your top three pieces of advice be?

Sara: I would say first of all, to accept yourself. I think that's the most important thing. 

Lauren: And it doesn't have to happen overnight. I mean, for you, it took years, but it happened. 

Sara: Yes. But start that process as soon as you can, because the healing will only happen once you accept it. It's not going to happen if you're constantly grieving your past life and looking back at it. And hoping to get back there one day. That's not going to happen. Yeah, you might not have the life that you had dreamed of. But you might have an equally amazing life. You just have to accept and be patient with yourself. And once the acceptance comes, that's the only way you can take those steps to feel better, to get better. The second one would be to make your wellness your priority. 

Lauren: Those balls, baby! 

Sara: Yeah. 100%. So important. I think that in the past, for me, running for those relationships that I thought that I was going to have for the rest of my life was very important, making sure those people were still in my life. Even though they refused to listen, or when they listened they refused to empathize. I was running after the wrong things. So I think that just making yourself and your wellness journey the priority is very, very, very important. Eating healthy, exercising, meditating, making those changes in your lifestyle, having habits that support your wellness, that's super important. And then the last one would be, find a community.

Lauren: Oh, yeah, that's a big one!

Sara: Yes! As I mentioned, I didn't have that until last year. My blog is what gave me that community. So I think that that is so important. I remember I did look into something of this sort back in the day, but because I didn't find anything of that sort, I kind of gave up on it. When I started my blog, I realized more recently that there's so much information and there's so many people on the Internet that are out there that can relate to you, that will understand everything you're going through.

And these people will understand you and your life way more than your friends and family will. Because they're going through it.

Chronicon, for me, is the love of my life because I felt so seen for the first time in my life. And I felt a connection with everybody in that room. 

Lauren: And they didn't have to have the same condition, but they got it. 

Sara: Exactly. See, that's the beauty of it. Because none of us have the same condition. But everyone knows how to listen, how to hold space for you. And those are things that able-bodied people usually don't know how to do. 

Lauren: Here's the fun one. What are the Top Three Things in your life that give you an unbridled joy and that you're not willing to compromise on, despite your diagnosis and the lifestyle changes you've made to live with fibromyalgia? These can be guilty pleasures, secret indulgences, maybe comfort activities when you're having a flare. But what are three things that you turn to to light yourself up?

Sara: Okay, so this one's a bit weird, but I absolutely love eucalyptus!

Lauren: Oh, I like this! I've got a eucalyptus tattoo!

Sara: Oh! I love eucalyptus. We're talking eucalyptus body oil, eucalyptus bath shower, essential oils, room spray, pillow spray perfume. I want it, I love it. And I have it, literally. There’s just something about it. It just makes me feel so good. 

Lauren: It’s very grounding. It's very earthy. But also, an ethereal kind of scent.

Sara: It brings so much calm. Even when I do my speaking engagements, or right before my speaking engagements, I’ll spray some eucalyptus room spray, I'll put on some eucalyptus body oil.

Lauren: That’s lovely.

Sara: Yeah, it’s a weird obsession, but I love it!

Lauren: No, I think that's a great one. And it's accessible to people. Like, go get yourself some eucalyptus oil.

Sara:  I know you mentioned things. But can I say people? 

Lauren: Totally, it doesn't have to be things, it can be people. It can be experiences, anything. 

Sara: Right. When I say people, I mean kids, or pets. The way that they connect with you, it’s just so different. They bring a lot of peace and calm.

Lauren: I don't know what kids you know! I don't know any kids who bring peace and calm! (Laughs) They’re too energetic for that. But they're certainly disarmingly honest, and that's quite grounding! 

Sara: Well, I have a cousin, she’s 4. And I don't know, every time I am having a bad day. I'll call my aunt and I'll ask if I can FaceTime her. Just looking at her and talking to her. I think it's more about just watching her live life, the way that they live life. It's carefree. They don't know the burdens of society, none of that stuff. It's all about toys. And when am I going to go out?

Lauren: Play and joy, yeah.

Sara: Exactly. So I think just watching that is what brings me joy. Or, my brother just got a puppy.

Lauren: Oh my gosh, the best.

Sara: Oh my God, yes, I'm obsessed. Anytime I'm having a bad day, I’ll call up my brother and be, like, “Hey, I want to see Kubo.” Kubo doesn't know I'm FaceTiming him, but I FaceTime Kubo.

Lauren: Watching them explore things from a sensory point of view that's pre- all of your diagnoses. The way that animals and children see the world is the way that we have to unlearn ourselves, right. We have to remove all of that social pressure and self-judgment and stuff. 

Sara: Yeah, it sort of makes you forget about everything for a moment. And I love that. And in terms of people, I also just love hearing people's stories.

I just find so much healing in hearing their stories. There’s something about it that helps me process my pain, helps me accept it more.

I think that there's always one or two things that you can learn from anyone when you have a deep conversation with someone. How people move through the hard parts of their life, the most difficult journeys of their life …those stories really inspire me, and they give me a life. 

Lauren: I love that. And I think yours will do that for other people, too. 

Sara: I hope. I really hope. Fingers crossed. 

Lauren: So what is your ask for listeners today, as well? What can they do to support you and the fibromyalgia and chronic illness community in your continuing work? 

Sara: Just listen. When someone tells you that they're in pain, believe them. When someone tells you they're struggling with something, believe them, hold space for them. Even if you don't have the capacity to put yourself in their shoes, just at least accept their feelings. I think that's one thing that's so important. Also, have more conversations about these sorts of things. I'm really happy because there actually is a lot of conversation around mental health and chronic illness these days. But I think that those conversations only usually happen around people that actually have those illnesses. It would be nice if anyone and everyone actually sits down … if they sit down, and they actually have that conversation and try to know people's struggles, it might help them understand someone else better. Also, I think that one of the biggest ways to support our community is for people to share this information. A lot of times, if you come across an Instagram post that has to do with mental illness or chronic illnesses, share that. Don't just read it, because that knowledge is only reaching you basically. Why don't you let that cycle goes on and on so that all of your followers could read that. There might be one person in your followers that actually knows someone with a mental illness or chronic illness, and they're unable to understand that person. However, just because you shared that one post, and they read that, it could help them understand that person better. So, getting more comfortable with sharing and supporting people that are advocating for mental illnesses, chronic illnesses, invisible illnesses, any sort of illnesses. 

Lauren: And what is next for you? What's next in Sara's advocacy and wellness journey? 

Sara: Right now, I'm actually working on a docu series. It's supposed to be a five-episode docu series; each episode is going to be about a different chronic illness. We've only shot the first episode, and then the pandemic happened, and things are put on hold for now. But I'm really looking forward to finishing that up. I think that people need to know more about different chronic illnesses.

I need to learn more about different chronic illnesses. I only know about the ones that I go through. I need to learn as well.

We shot the first episode, and it was a beautiful process, because knowing about someone else's life at such a deeper level … tears were shed. But yeah, so I'm working on that. And I’m looking forward to doing more speaking engagements, hopefully.

Lauren: Amazing. And can you remind everyone where they can find you so they can follow for updates on the docu series, and also follow your blog?

Sara: My website is fabulousandfatigued.com. And then my Instagram is @fabulous.and.fatigued. 

Lauren: And we'll link to all of this on the web page for the episode.

Sara: Awesome. 

Lauren: Is there anything else you'd like to share before I release you into your evening?

Sara: I just want to thank you for this. This was wonderful. And I absolutely loved diving deep into my past life. I feel like it sort of made me realize how much my life has changed for the better, and how I've come such a long way. Things are so nice now, thankfully, and they seem to be working out. So you know, just just looking at the hard part. And then being thankful for the easier and the happy part, if that makes sense. So I really appreciate that.

Lauren: It’s my pleasure. You did all the work! I'm just pleased to have had you on the show, and I can't thank you enough for giving us your time and your energy and your presence today. It really was truly an honor. 

Sara: Thank you. Thank you so much.

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