Loss 63/101: Loss through chronic illness and lupus: Olivia Abousaid

#130. Not all losses are bereavements. Sometimes they follow a diagnosis and impact someone for the rest of their life, like with our guest in this episode.

This is The Silent Why, a podcast on a mission to explore grief, asking if hope can be found in 101 different types of permanent loss.

Loss #63 of 101: Loss through chronic illness - Lupus

In this episode, we meet Olivia Abousaid - a grief coach based in Los Angeles who lives with the autoimmune disease Lupus. Olivia shares the lesser-seen grief that comes with chronic illness - losses that don’t always get named or acknowledged.

We explore the impact of Lupus on daily life and identity, the challenging task of letting go of independence and learning to ask for help, navigating invisible grief as both a coach and a patient, the mental weight of “shoulds” and societal expectations, and finding agency and hope amidst physical limitations.

From missing out on sunny afternoons with friends to facing the fatigue that alters routines and dreams, Olivia’s story speaks to anyone who has experienced loss through ill health, medical diagnosis, or an unexpected change in life’s trajectory.

This is a powerful conversation about learning to grieve what’s gone, while choosing to hope in what remains.

To find out more about Olivia, visit: www.pact-coaching.com

www.instagram.com/pact_coaching

https://linktr.ee/pactcoaching

Chapters

• 0:00 Introduction to Olivia's Lupus Story
• 3:32 Understanding Lupus: Symptoms and Diagnosis
• 9:52 Daily Impact of Fatigue and Limitations
• 15:12 Recognizing the Grief of Chronic Illness
• 21:55 Cataloguing the Many Invisible Losses
• 30:23 Finding Hope Despite Uncertainty
• 43:14 The Gift of Empathy and Connection
• 53:18 Episode Closing and Resources

Transcript

Olivia Abousaid: 0:02

Hi, I'm Olivia Abusaid and I'm here to talk about my loss and grief of getting diagnosed with an autoimmune disease, specifically lupus.

Claire: 0:16

Welcome to The Silent Why, our podcast on a mission to uncover 101 different types of permanent loss, while looking for hope and hearing from those who have experienced them firsthand. I'm Claire Sandys.

Chris: 0:26

And I'm her husband, Chris, and in this episode we're chatting with Olivia Abousaid. She's a grief coach based in Los Angeles in California, who's diagnosed with the autoimmune disease lupus.

Claire: 0:38

On this podcast we explore all kinds of loss, not just bereavement, and in this episode, loss 63 of 101, we talk to Olivia about what it means to live day by day with a chronic illness and the many invisible losses that it brings, from daily routines to long-term dreams.

Olivia Abousaid: 0:54

Instead of cleaning my apartment all the time, maybe I get someone in once a month to help with the cleaning and that's very big for me and for some people it's not that big a deal. For me it is because I'm not accustomed to asking for help. I'm such an independent person I always have been.

Chris: 1:11

Now I'm having to admit in LA, as well as coping with fatigue and the slow path to acceptance and the challenge of letting go of the pressure to always be productive.

Claire: 1:30

Even as a grief coach herself, Olivia shares how difficult it can be to recognise and honour your own grief For myself.

Olivia Abousaid: 1:38

It gets a little messier. You know, it is sometimes hard to recognise your own grief when you're the one going through it, when you're dealing with the day-to-day busyness of life.

Claire: 1:50

Despite all that lupus has taken from her, Olivia continues to choose hope, finding it in small daily acts of courage and self-care.

Chris: 1:58

You might think that she should remain mindful of taking control of her situation, refusing to let others dictate how she should feel or what she should do, shouldn't she?

Olivia Abousaid: 2:07

Try to stay away from shoulds, because who is shoulding you? Why is society shoulding you? Why are you shoulding yourself? Why are you shoulding other people? We don't want to cling too much to these things that we either prescribe to ourselves or that society prescribes to us, because they don't do us any justice. When you have something like an autoimmune disease or childlessness or things like that, certain things have been taken out of your control. But that doesn't mean that your life always has to feel out of control or that you were always a victim to your circumstances. We do still have some control.

Claire: 2:43

We think this is an episode that will resonate with anyone that's known the losses that can come with ill health or a medical diagnosis, especially one that instantly changes your day to day or your future.

Chris: 2:53

And to begin our conversation, we asked Olivia to tell us a little bit about herself.

Olivia Abousaid: 2:59

So my name is Olivia Abousaid. I am a master certified professional grief and transformation coach, and I'm here to talk about my experience with grief and loss as it pertains to having a chronic illness, in my case, specifically lupus.

Chris: 3:20

Take us into that straight away, then I guess Lupus. What is lupus? When were you diagnosed? Tell us a bit about that.

Olivia Abousaid: 3:27

Right, I'm glad you're asking. When I got diagnosed I had no idea what lupus was, and I think I saw something on the Lupus Foundation website recently that said, over 60% of people in the US here don't know what lupus is, so it's not surprising. Lupus is an autoimmune disease that affects all of your organs, affects your body. It's basically your immune system. Instead of attacking the viruses and the bacteria that come in to your immune system like a regular person's, it instead misinterprets your own tissues and organs as the enemy and is attacking your body on a regular basis. So everybody who has lupus is either on an immunomodulator or an immunosuppressant to bring down that overactive immune system and to try to bring down the inflammation that comes with that, and it can make you very tired. That's the main complaint of people with lupus. It's definitely one for me.

Olivia Abousaid: 4:34

Fatigue is something I struggle with all the time, and some people have it bad enough that it is attacking their organs. They have some kidney failure. That's a very prevalent one. There is lung involvement, heart involvement, liver involvement. When I first got diagnosed, a very scary statistic that I read was that, as a person with lupus, you are 50 times more likely to have a heart attack. That's five zero, which I didn't know what to do with that information when I first got diagnosed. I still don't entirely, but I try not to live my life around such a crazy statistic. So you know you can't. It's too much to try to keep that in mind all the time and to feel like any minute now you know something terrible could happen.

Chris: 5:31

So how long has this been in your life for?

Olivia Abousaid: 5:33

You know it's hard to say. I think I've probably had it my entire life. I always got sick very easily. Growing up and into my adulthood I've always gotten sick very easily. And it's not just that you get sick easily, you get sick worse and longer than other people. A simple cold for someone that'll last maybe three to five days, maybe a week for someone. For me will last two to three weeks, sometimes even longer. The one time I got COVID, I had it for a full month and I got it while outdoors double mask three weeks after getting my COVID vaccine, because I'm just that immunocompromised yeah, it's really easy to get sick. So I think I've probably had it my whole life.

Olivia Abousaid: 6:20

But I didn't actually get diagnosed until about three and a half years ago. Because what happened for me is something that is very common for a lot of people with lupus and other autoimmune diseases is that it can take years to actually get a diagnosis. So I kept going to doctor after doctor and saying I'm exhausted all the time, I'm very tired Please help me figure this out and they were running all the wrong tests. Nobody thought to test for autoimmune disease and beyond that I was getting these sort of plaques on my face that looked like eczema. So I was going to a dermatologist and saying what is going on and they would say, oh, this is eczema or oh, this is support dermatitis or whatever it might be. And it turned out to be lupus. Plaques and that's how I first got diagnosed was through my skin. Finally, a dermatologist thought to take a biopsy and it came back positive for lupus. So I actually have the systemic lupus inside my body and I also have cutaneous lupus that I deal with on my skin.

Chris: 7:31

So when you had the official diagnosis, just tell us a little bit about whether that was freeing or was it a burden. Was it a positive relief to get that diagnosis, or did it actually then open up the door to okay, this is my life now. I'm not too happy with that.

Olivia Abousaid: 7:55

All of the above, I would say it was a bit of a mixed bag, you know, because it's never nice hearing that you have one of the more serious autoimmune diseases out there.

Olivia Abousaid: 8:01

So that was a lot to kind of deal with and come to terms with, and in some ways I am still coming to terms with that. But there was also the sense of relief in that okay, now this has a name, I know what I'm dealing with, I can do some research, I can get the proper medical care that I need, Because for years I mean years I was going to doctors, and that's so frustrating, especially when you keep complaining of the same symptoms and I'd have them say well, your lab work looks fine, which a lot of doctors I won't say all, but there are a fair amount of doctors who go only by lab work or blood work and aren't listening to patients when it comes to symptoms, and so it's also important to find the right doctors who will listen to you and your symptoms, because you know your body best. But it definitely was a mixed bag of relief and and some grief as well.

Claire: 8:58

That's when the grief started for me were you the sort of person you mentioned that you've seen some statistics that were quite scary about the chances of heart attacks and things. Were you someone that started researching it straight away or did you wait a while? What's your kind of level of jumping on Google and finding out what this is?

Olivia Abousaid: 9:16

It was right away. I needed to know exactly what I was dealing with. I had never heard of lupus. I knew nothing about lupus. I started to learn about what it was. Different celebrities that had it. Selena Gomez is probably the most well-known celebrity who has it. She actually had to get a new kidney. So that's something that people who have it a little worse than me that may have to deal with at some point is organ transplant. So I'm the type of person that likes to research and know what I'm dealing with. So I really looked into it. And what should I be eating and not eating? What should I be doing and not doing? What more do I need to know? How can I talk to this, talk about this with family members so that I can try to build some support around me? So it was, it was all of it.

Claire: 10:15

Once you got the diagnosis, were they able to sort of help you and make life, day-to-day life, easier with medication? Now you knew what it was, or was it just it's still just? You knew what it was, or was it just, it still just? You knew what it was, but it was still just as hard. That's a good question it did.

Olivia Abousaid: 10:31

Getting that diagnosis did make it easier in that I am on the medicine now that I need to be on and my blood work has normalized since getting that diagnosis. So in that we are taking care of my disease In another sense. I still have all this fatigue and there's a lot of grief around the fatigue and the limitations of having that fatigue that I, you know, I'm still dealing with on a daily basis all the time, and I know a lot of people with autoimmune disease deal with that as well, and so I know I'm kind of doing what I need to be doing. There's also sunlight. It turns out we're supposed to avoid sunlight because we're sensitive to UV. Even fluorescent lights can put off quite a bit of UV, and so you know, when you go to big box stores you try not to stay too long, things like that. So it's things you never thought to look out for.

Olivia Abousaid: 11:29

There's some grief around not being able to go out in the sun too much, because in the summertime I used to love to be in the sunshine and to get a good tan and all of that stuff. Especially here in Los Angeles there are a lot of great summertime activities but you know we, we can't be in the sun too much. So there's been some grief around feeling, I call it. You know, I feel a little bit like a vampire where it's. You know, avoid the sun at all costs. So it's uh, you know I I can joke about it, laugh about it, but there is with that too.

Chris: 12:04

And we'll certainly dig into that. I think I just want to pick up on what you were saying about research, because in my experience with Claire and all the hours and hours and hours of research that Claire's done into menopause, into the PMDD that she was diagnosed with, the learning about it and then tweaking something, and then learning more and tweaking something it's really helpful to do but it's not fun, is it? You can't find a fix in the research. You're constantly finding answers to things you don't really want to have to do but you realize I'll have to try it, and then trying it takes weeks. So it's quite exhausting to do that level of research, to learn about how you can cope with something better, how you can come to terms with something, and even then when you're sharing experiences. Yes, it's great to have communities where you can share, but we're all so different, so what works for you might not work for the 10 other people chatting on facebook. Whatever it might be.

Chris: 12:58

Stuff can be quite bespoken. Everyone has an opinion and a solution and a try. This it worked for for me. There's so much to try, so much to read. Yeah, how was that experience?

Olivia Abousaid: 13:07

for you. It's so true. Everything you're saying is ringing true because you know it has been a learning process. I started researching at first, but things change all the time with new research and so you do kind of have to stay on top of it. I'll go to Lupus, la.

Olivia Abousaid: 13:25

Here is great about having different seminars and things like that with rheumatologists where they explain different medicines or explain how to do different things or how to live with your lupus in different ways, and so that's been great. Support groups are great, but it is exhausting trying to kind of keep up with everything and it's things you don't even think about, like the sunshine thing. If I know that there isn't much of a choice about it, I have to be in the sunshine for a little bit today sunscreen everywhere, or perhaps putting on your UPF 50 clothing, wearing a hat, trying to plan how you can minimize your exposure to sunshine and things like that, and it's things that other people don't have to worry about, that you have to take the time to prepare for and to do and things like that For people who have no idea about this kind of thing.

Claire: 14:23

They've led a relatively healthy life. They go about their day. You know, occasionally have a medical thing pop up and then it goes away again. Give us a bit of an idea of how it affects you on a daily basis. What are the sort of things that it's sort of taken from you or restricted in you or maybe allowed you to do? But how does it affect you day to day?

Olivia Abousaid: 14:42

The fatigue mainly is what really affects everything. It informs everything. In my life there has not been a lot of solutions for me and for a lot of the people in the autoimmune community that are dealing with fatigue. You know we're told the things that are told to everyone by doctors and that you need to eat healthy and try to get enough sleep and limit social media and think positively and do yoga and get exercise and all the things. So you try to do all these things you try to do right by yourself, but the fatigue is can be really debilitating sometimes and that is something I deal with and I think that's where I feel the most grief about having lupus is that I used to be very A-type and ambitious and high achieving and I get so much done every day. I prided myself on productivity and all that I could get done and all the things and I've really had to slow down quite a bit these past few years, especially now with being middle-aged and having perimenopause and you get more tired as you get older anyway, but it's really multiplied when you have lupus and other health things going on.

Olivia Abousaid: 16:09

One thing about lupus is that you're more likely to have other autoimmune diseases as well. So it almost feels like a no-win situation sometimes when it comes to that, but it's learning to work with your limited energy, it's continuing to try at that exercise, which isn't always easy, but it's something worth trying for because in the long term it can help your energy level a little bit. And there's something to be said for acceptance of where you are, and that is a work in progress for me. There's something to be said for acceptance of where you are, and that is a work in progress for me. That's not to say that the grief will go away in adapting to this new, much slower way of life, but it's also necessary to come to some sort of acceptance with it that this is just how it is now, instead of beating my head against a wall. This is what it is, so let's make the best of these limitations.

Olivia Abousaid: 17:08

And one thing to note also is that you know we're sort of from a young age. We're told societally, structurally, that we have to be these super productive people because that's capitalism, you know. And so some of that is breaking out of that too, where, whether you have an autoimmune disease or not, it's allowing yourself to rest when you need to rest, to take it slow to take it easy to take that vacation time. So in that sense it's not totally bad to learn to slow down. We don't always have to be productive 100% of the time, so there's some pluses to it. When you have an autoimmune disease, it's always about kind of looking, trying to look at that silver lining. It's not always easy, but it's worth keeping in mind.

Claire: 17:55

Do you worry about when you're sort of, like you said, a can-do person and productivity seems to be this thing that's put on this pedestal nowadays? Do you worry about being judged? Because I know with fatigue it can be very easy to well. I feel like this sometimes, to feel like it looks like you're being lazy and there's that fear that other people see it a different way. That might be a personality thing, though. Is that something you've ever worried about?

Olivia Abousaid: 18:16

I do worry about that from time to time. I have been building my coaching business and it's a passion project of mine. I love the coaching, I love helping people, but it's it's in all honesty, it's moving a little slower than I would like because I have to take constant breaks for my rest. And so, you know, there's the side of me that says, you know, I have to offer myself grace and it's something that I tell to my clients. To offer grace. It's OK to rest, it's OK to grieve, it's OK to take time for these things, but it's also it's not always easy to do that. It can be hard.

Chris: 18:57

Totally understand that. I think we've experienced, yeah, again that and just conversations between the two of us about how often you feel like somebody might be, or groups of people, being the one that needs to rest or needs more sleep. Just how that, yeah, how that interrupts friendships, relationships and even, like you said, with businesses.

Claire: 19:20

You know it's very. You know I'd like to do more with the podcast and stuff is. You know it's very. You know I'd like to do more with the podcast and stuff. And when I can't or I don't, there would have been a day and age when you wouldn't have known if anyone else was doing anything with their business, because you just were in your own little kind of silo working away. But now we have social media and the internet. You're aware of all the other people that look like they're doing amazing and they're putting out posts every day and they've got these videos and they're on TikTok and they're on you know. And so I think that doesn't help, because it and they might not be doing it themselves, they might be struggling to do it, you don't know, do you, but it does it can very quickly make you feel like you're failing in a in certain ways, which is sad.

Olivia Abousaid: 19:55

Yeah, it does. I mean that's a good point. I feel guilt around not posting all the time about my coaching. I feel guilt about having to cancel on friends last minute sometimes because I'll be hit with a wall of grief and I literally I just need to spend the next few hours on the couch laying down instead of going and having fun with my friends, and you know I feel like I'm letting people down when I do that.

Olivia Abousaid: 20:23

So I've been trying to speak very openly with my friends about here's what I'm dealing with with my health and with my fatigue, and I think most of them really do understand it's my own personal like oh, I'm letting people down, or I'm not posting as much as I should, or I should have put in six hours today on my business, but I only did two as I should. Or I should have put in six hours today on my business, but I only did two. Things like that, where there is a guilt aspect to it that you know. Eventually, hopefully, I can allow myself that grace to say I don't need to feel guilty, and that is part of why I'm being so open with friends about it is that I shouldn't have to feel guilty about it. It is health related.

Chris: 21:06

I can't remember who it was that said to me several months ago now about something about the word. Should that as soon as you hear, or use the word should you're bringing somebody else's sort of rules?

Chris: 21:14

into it by whose rules are you playing if you say I should be doing this or that? So yeah, I've become quite sensitive to that. You're very comfortable, clearly, with with using the word grief. It's something you work in, you talk about yeah, you were just referring to it then certainly with again spending time resting if need be, or just on your own. What has that process been like of recognising, for a start, that this is something that I need to grieve, and how messy has it been learning to grieve it?

Olivia Abousaid: 21:46

you know that's such an interesting topic because when I'm working with clients I can so clearly see what they're going through. I can see their grief, I can help guide them through it and call it by its name, et cetera. For myself it gets a little messier. You know, it is sometimes hard to recognize your own grief when you're the one going through it. When you're dealing with the like, the diagnosis, my first initial response wasn't to think, oh, I'm going to grieve, now I'm going to start grieving. It was more that I just want to learn all I can about it. I want to learn more. I don't want to feel like a victim to this, but sometimes you do have to take the time to appreciate that that is what's happening, that naturally you're going to grieve certain things and so, uh, I have to do that work, to be a little more introspective, practice what I preach with the clients and work with that grief.

Olivia Abousaid: 23:02

But there's a lot of loss associated with having an autoimmune disease, things that you don't even think about, like time.

Olivia Abousaid: 23:10

I think that's something that's not necessarily talked about enough, even within communities that deal with these autoimmune diseases and lupus. A lot of the time it's about the loss of energy, the fatigue, but what that can translate to is also a huge loss of time. It's kind of like what I was saying with you know, if you're having to lay down for four or five, six hours, that's time you can't do anything else, and so it also feels like a bit of a loss of independence. You know I used to pride myself on I can go it alone, I don't need anybody, I can do this and I can do that. And it's another one of those silver lining things where you have to kind of learn to reach out for help and build community and I think we're learning that more and more societally is that community is so important for us and it's not always easy to reach out for help, but it's something that I think benefits all of us in the end.

Claire: 24:15

There's so many losses attached to something like this, right, I think you know over the years you'll probably still be noticing them forever almost little things that will come in or that you can't do. And I think that's why it's so important to talk about these kinds of losses. It's why we started the podcast, really, because with a bereavement there's a loss of a person and people kind of know or roughly expect what that kind of grief looks like. But with this sort of thing it was the same with our childlessness and the other things we've talked about. They're a little bit more vague and you think you know what you've lost. With childlessness it's quite obvious there's a loss there. You haven't had children.

Claire: 24:47

But when it comes to a disease or a condition or health, it's a bit more fuzzy because it doesn't look like a loss to a lot of people. It fuzzy because it doesn't look like a loss to a lot of people, it just looks like a diagnosis. So it can take a while for you to realize oh, this is what I've lost, not just health or energy, but I've also lost hanging out with my friends. I've also lost hanging out in the sun, all these other things that kind of come around it. So it's such an interesting thing to talk about. How do you think this kind of grief differs from a bereavement For you going through it? Do you know how it differs in that way to kind of go through it, or would you say it's quite similar?

Olivia Abousaid: 25:21

I would say it's a little bit different. Actually, it's similar in that when we whether someone has died or we've gotten a diagnosis for something, you're going to have initially an acute stage where you're kind of dealing with the loss and the ramifications of everything all at once, you know, and then you kind of settle into this grief stage where it just becomes sort of part of your life and part of your day to day, and so in that sense there's a similarity. But you brought up a good point in that, because it's a bit more vague than someone losing a family member or something. There's this disenfranchised grief where society may not always recognize that it is grief or recognized to sort of be there for you, which is another reason I try to be so open about it with my family and with my friends to let them know that this is challenging.

Olivia Abousaid: 26:23

It's not easy having this, it's not easy dealing with this. It's almost like losing a pet in a way as well, because society kind of understands that loss. For about a week or so. They'll let you sort of grieve that for about a week. Okay, that's a bad thing that happened, but at the end of the day it's just this or it's just that where people kind of justify not adding that value to it that there would be if you lost someone. But it is a grief and it's a very deep grief and it's something that we need to take time with and it's ongoing. Grief doesn't go away. You just kind of learn to live with it in different ways, and something I do in my coaching with my clients is to try to find some hope through the grief, recognize the grief and transform it into community, into action and things like that. So that is something I'm working on myself, but it's not to undermine the importance of the grief and the loss and going through all of that.

Chris: 27:30

It's really interesting hearing you pick out some of the things, I guess, that affect you in terms of the losses or that you've really experienced or felt quite keenly. I mean, would you go so so far as to like list what losses you've experienced, or is it just you know one loss per season?

Olivia Abousaid: 27:48

I actually wrote down a list of losses as I was prepping for this podcast, because sometimes when you're dealing with grief and trauma, it can kind of be this nebulous bit of emotions that's sort of swirling around in your head and in your heart. And it was actually a good exercise for me to sit down and write out these losses and how they have made me feel and how they've contributed to the grief that I've experienced. And it was more loss than I thought. Actually. It kind of surprised me and it's simple. Things like you get some hair loss with lupus there are some people with lupus who fully have alopecia. They've lost quite a bit of hair actually and how that can affect your self-esteem and your sense of self-worth, as you can develop rashes or you lose hair or things like that. On the physical side of it outwardly physical there's the loss of energy. There's some loss of independence, as you realize you need to reach out for help, not being able to spend time in the sunlight there's that loss.

Olivia Abousaid: 28:59

Faith in the medical system was a big one for me. I thought doctors were sort of these demigods in a way, who they know everything there is to know about medicine. They're the experts. Surely they can diagnose me in no time. But the fact that it took years and that I got a lot of incorrect diagnoses before getting the correct one made me realize they are human and fallible, and so there was some loss of trust in the medical community. For me, time is one that is not talked about quite as much, but having to spend so many hours a day resting, laying down, takes time away from everything else, so learning to slow down is really a part of it.

Olivia Abousaid: 29:44

A lot of people with autoimmune diseases experience a loss of income because they're too tired to work a full-time job, and that one is a really big one because it's almost like having an autoimmune disease means you're more likely to live in poverty, plain and simple, and that's a big loss right there for a lot of people. A lot of grief comes with that Mental acuity. You start to get more brain fog. When you have lupus and I'm sure with other autoimmune diseases I don't think as clearly as I wanted. This may sound kind of silly, but it's always been my dream to be on Jeopardy, that game show, but now I question if I can actually do that, because I have so much brain fog sometimes I can't even think of the right words to say sometimes, and that definitely goes back to affecting my sense of self and self sense of confidence because I've always been sort of quick, witted and sharp and intelligent and it feels like it's deteriorating a little.

Olivia Abousaid: 30:48

So it's it's hard to deal with and, in turn, lastly, that does affect your mental health. It's sort of the loss of mental health in dealing with the depression and the grief of all these losses and the new limitations that you have. It can really affect mental health. A lot of people with lupus and autoimmune diseases struggle with depression and anxiety and mental health issues and, as such, suicide rates are higher for people in this community.

Olivia Abousaid: 31:21

And so it's so important if I may put this out there if you know someone with an autoimmune disease, it's so important to reach out to them and to try to build that community with them, to let them know that you're there to check on them, offer help in any way you can, even if you're there to check on them, offer help in any way you can, even if you're busy.

Olivia Abousaid: 31:39

Sometimes just saying hey, I'm thinking of you can go a long way with someone who is dealing with autoimmune disease, because it is such an isolating thing, especially when you're not able to go out and connect with people as much as you would like, it can really start to feel very isolating. So, you know, just try to be there for anyone who who is dealing with that. A lot of people don't know what lupa says, so I always invite people to ask, and google exists in the world so you know they can always look up things as well, but I'm always happy to answer questions what you were saying there was making me think again about how a community can gather around someone that is mourning the loss of someone or a pet.

Chris: 32:24

There can be colleagues, friends, family that will join you in that. When you've got something like a chronic condition, I expect it can be quite lonely at times. This is my thing and I've got to sort of come to terms with it myself. Do you find it's a lonely path to tread or do you feel like you have a good number of close friends or family members who who get it, who sit with you, who grieve with you?

Olivia Abousaid: 32:50

I think it's been a lonely path but it's getting a little bit easier as well. As I have started talking about it more with them, I realized that lonely path was making me feel very isolated. I don't personally know anybody else with lupus. When I go to those lupus support groups that's really the only time I interact with other people who have lupus. So it has been kind of a lonely and isolating path and sort of feeling like you're alone in this, like I got diagnosed with this thing and I don't know anybody else who has it or can understand what I'm going through.

Olivia Abousaid: 33:32

So more and more over time, especially in these past few months, so more and more over time, especially in these past few months, I've really been talking it up to my friends and really emphasizing the grief aspect of it and the fatigue aspect of it and how that's affecting me and I think it is kind of sinking in a little more now with friends. I think they do understand me not always being physically available to hang out, always being physically available to hang out. They know I'm always there for them if they need anything via phone call or maybe we can get on a FaceTime or something, but I may not always be physically available for them, and I think that's feeling a little better for me as I really open up about talking about it, because it's making me feel less isolated about it and it's making me feel like, okay, people get it more now. I have a little more of a community around myself now and so you know, I would encourage anybody to do that.

Claire: 34:27

What's been the sort of the hardest part of the journey so far? If you look back from pre-diagnosis through to finding out where you are now grieving, is there a stage that you think has been the hardest to get through?

Olivia Abousaid: 34:39

I think you know, possibly recently it's hard to um say, because recently I've been feeling the most grief about it, but also the most enablement about it, because I'm sort of, you know, realizing that I'm going through all this grief and still grieving it very much has made me realize that I need to change some things, and so that's why I'm talking about it more with people and that's why I'm really starting to define where my grief lies, the losses that I felt, all of the losses, call them out by name and understand why the grief is what it is, because I've lost so many things because of this and there's an empowerment in starting to do something about it. I'm getting to the point with my fatigue where I'm realizing I can't keep going it alone. I do live alone. My family is a few states away and I live alone here and I've got great friends, but they have their own lives. They're busy as well, they work long hours, and so I am realizing that I need to search out some help. Maybe, instead of going to the grocery store a couple of times a week, I get grocery delivery. Instead of cleaning my apartment all the time, maybe I get someone in once a month or something to help with the cleaning and that's very big for me.

Olivia Abousaid: 36:17

For some people it's not that big a deal. For me it is because I'm not accustomed to asking for help. I'm such an independent person I always have been I don't easily ask people for help. Now I'm having to admit to myself I can't do it all and I do need help and there's a lot of grief in that, and I'm really realizing that lately and dealing with all of that, but at the same time feeling like, no, this is good, because I'm recognizing certain things, I'm dealing with certain things and starting to make plans for how can I get help? Where can I get help? So it's a little bit of both. It's a bit crazy. It's a two-sided coin.

Claire: 37:00

It's a testament to you and how you're dealing with it that at the worst point, when you're feeling the grief the most, you're actually learning to reach out and ask for help, also sharing it with friends, and therefore it's helping you. And I can really see how if you didn't do that at that point, that worst point of grief would become even worse because you would be alone. It's a testament to how you're handling it that it's both the good and the bad at the same time.

Olivia Abousaid: 37:27

It's almost like hitting a breaking point in a certain way, for lack of a better term. I don't want it to sound super dramatic, it's not quite that, but it is. You hit this point where you're like I can't stay this way anymore. And I think you know with my own clients that's. The point at which they reach out to me is when they've hit this breaking point and they, you know, they've been in grief for months, or possibly even years, and they say I can't stay this way anymore. It's overwhelming. Something has to change, something has to transform. And I think that's where I am now in my own grieving process is that it's feeling a bit overwhelming lately. It's a lot, but I know things have to change and that's when the real transformation can happen too. And I think that's what's kind of informing. That little bit of hope for me is knowing that you know, if I make these changes, then it can help. You know, I don't have to be this exhausted all the time. These seemingly little things can actually really help.

Chris: 38:26

Is there a healthy balance to find, to achieve between saying lupus, verbalizing it, asking for help, you know, talking about it with friends and family on the one hand, but, on the other hand, avoiding the sort of negative connotations around using it as, like a label. You might have friends or family that will often say, oh, I can't because of this, it's that you know you've got this label now and you just keep telling us about it, et cetera, et cetera, where it can be a bit unhealthy. Is there a balance to be found in that of just knowing how much to talk about it without going on about it too much?

Olivia Abousaid: 39:00

I think it hasn't been too much of an issue so far. But I think you know, I have been finding more of that balance lately where I want to talk about it more and I want people to know what I'm going through. But I don't necessarily want to hammer them over the head with it. I don't want it to become my total identity, like I'm lupus girl, you know. I don't want that to be all that I am to people. I just want people to kind of recognize that this is my struggle, this is what's going on with me, but I don't want it to be my total identity with people, you know.

Claire: 39:40

Yeah, I understand that. One of the things we ask all our guests is how they've felt about the question. Why have you struggled with that at all? Has that been something you've asked yourself? Why me? Why am I going through this? And if you have, have you answered it or you know where do you sit with that question?

Olivia Abousaid: 39:56

Oddly, I've never really asked myself that question. I know a lot of people do when they get a diagnosis, I think because I've always had health issues and I think, I suspect that I've always had lupus, and so it wasn't necessarily a shock that, oh no, I have this autoimmune disease now. It wasn't. I'm healthy, healthy, healthy, and then one day all of a sudden I'm sick and I have this autoimmune disease. It was much more gradual for me. It took way longer than it should have to get that diagnosis, but it just didn't surprise me when I got it. So I never had that thought process like why is this happening to me? Because I feel like I've always been dealing with it in some way or another.

Chris: 40:46

I've got one more question before we start talking about the journey with hope, and that's to come back to something you said about 10, 15 minutes ago about coming to terms with it.

Olivia Abousaid: 41:05

There was almost a sense that there's an inner wrestle that you know you're not to where you want to be yet in terms of acknowledging it and accepting it. So what is stopping you, do you think, getting to that point that you want to be? I think part of it is that hyper independence that I have and knowing now that you know it's time to ask for help. I was honestly looking at the future with a lot of anxiety, like what happens if I get to the point where I'm too tired to take care of myself? What then? And I didn't really have a good answer for myself. So it was causing more and more and more anxiety for me.

Olivia Abousaid: 41:36

I don't know what to do about the future and kind of recently realizing that, you know, maybe I should look for help now, before I get to a point where I may or may not be debilitated or may not be able to take care of myself.

Olivia Abousaid: 41:52

And that was kind of a refreshing thought for me that hadn't occurred to me, that I can help myself now, I can do something about it now, before getting to that point and kind of always focusing on that worst case scenario for the future. I want to be hopeful about the future. This isn't an easy disease to live with. But I do want to have some hope, because if you get mired in statistics like you're mired in statistics like you're more likely to get cancer, you're more likely to get other autoimmune diseases heart disease, kidney failure, et cetera, et cetera then you're constantly going to be in this state of both grief and anxiety about what's going to happen to me in the future. All I can do is take it a day at a time and try to help myself now and to ask for that help now.

Claire: 42:46

You've just made me realize something. We often ask people if their grief has changed their view of the future and for a lot of people, especially when we're speaking to them, they've come to this point of it's helped them in a good way. So they've gone through this grief and now they're grateful for life, or they feel more alive, or they take it each day as it comes. They've got all these good things that have helped them in the future, or they've got over the worst. You think. You know it can't get any worse than that. Therefore, I've got this freedom in how I live.

Claire: 43:18

But when it's something like a diagnosis word, you know I'm 50 times more likely to have a heart attack. Or you know I might get worse from here and need help and I've got to ask someone to look after me and it changes it in a very sort of negative way. And I hadn't really put the two side by side before and thought about that. And I know, for, like people in the childless world, there's a lot of fear with the future as well, because you have this assumption that if you're married or you have children, they'll help look after you when you're older. If you don't have any of those. There's that fear of what happens when I get old. Who's going to look after me? So yeah, it's not good and I hadn't really thought about that until you just said it. Have you had to? You said you talk about hope. Have you had to really actively put hope in the future to make it seem better, to stop it seeming so dark?

Olivia Abousaid: 43:59

Yeah, I think it is definitely something I've had to consciously be aware of and consciously try to kind of insert that into my life, that bit of hope, and to not be such a defeatist about it. Because it can be really easy to get that way when you have an autoimmune disease, especially when it feels like the life is sucking out of you, sometimes with this fatigue Not to again get into hyperbole but it does feel that way sometimes, like what kind of life is this if I'm this exhausted all the time and I can barely function and do anything? So it can be hard to really hard to stay positive, really hard to insert hope sometimes. But also, you know, we don't know that there is an unknown, we don't know that the worst case scenario is going to happen. We just don't know that. And oddly there's some comfort in that, because if we knew the worst case scenario for sure was going to happen, then I think it would be very normal to be very down all the time and say you know, well, that's it. I may as well throw my hands up and give up and everything. But the fact of the matter is I don't know that this will get worse for me. We do naturally get a little more tired as we get older, but I don't know that I'm ever going to have organ failure. We're controlling my lupus with medicine and that may just be the story. For me. It stays under control. I don't have any organ involvement and so I try to take hope where I can, and I think that's what a lot of people with autoimmune diseases do is you just try to find hope where you can, try to accept what is right now and you still have to live your life. You still have to try to find a life and find joy in that life.

Olivia Abousaid: 45:54

And you brought up a good point, chris, a little earlier about shoulds. You know this is something we learn in like cognitive behavioralism. Sometimes what's referred to these days as the cognitive dissonances is try to stay away from shoulds, because who is shoulding you? Why is society shoulding you? Why are you shoulding yourself? Why are you shoulding other people? We don't want to cling too much to these things that we either prescribe to ourselves or that society prescribes to us, because they don't do us any justice.

Olivia Abousaid: 46:25

When you have something like an autoimmune disease or childlessness or things like that, certain things have been taken out of your control, but that doesn't mean that your life always has to feel out of control or that you were always a victim to your circumstances. We do still have some control. We do still have some agency and that's something I talk about with my clients as well is that we, we have some empowerment. So let's kind of focus in on that. It's okay to grieve and mourn the loss and things like that. That's always going to be there. But it's also okay to grieve and mourn the loss and things like that. That's always going to be there. But it's also okay to have some hope and to look for better things.

Claire: 47:07

Yeah, Because if you just project doom into the future, it just ruins the now, doesn't it? You end up living in a much worse place about something that, like you said, might never happen. Has hope? Has it always been there? What's your relationship been like with hope? Has there ever been a point when you'd say you lost all hope?

Olivia Abousaid: 47:25

Hope has been a little elusive at times, to be honest. You know, with major fatigue it's really hard to keep a positive attitude. Sometimes it's really hard, especially when you're not, when everything has to get put on hold, the dishes have to sit in the sink, the laundry's going to sit there undone, you're not working on your business as much, you're not hanging out with friends as much, and community is so important. So you know that one really hurts sometimes and so it's um, it's been elusive for me at times. It's been hard to find that hope, but I'm making more of a conscious effort these days to insert it and to include it in my thinking and to not be so down about it all the time, and that's part of working through this grief for me.

Claire: 48:14

There's a question I want to ask you. It's not an easy question, I wouldn't ask it to everybody actually, but would you say any good has come from it? Has there been good coming out of your diagnosis and everything you've gone through?

Olivia Abousaid: 48:26

that's a great question, I would say there is some good. You know, the pace that I was going out was not healthy. Um, oftentimes, at past jobs I would, in order to prove myself there's a bit of people pleasing in there as well. In order to prove myself. At past jobs I would, in order to prove myself there's a bit of people pleasing in there as well. In order to prove myself. At past jobs, I would like work like crazy and do this and do that and multitask and all of these things just to prove myself and show them like what a good employee I am. And that burned me out really quickly at job after job. And so now I have to make that time. I have to slow down. I have to make that time I have to pace myself. So now I'm actually working at a rate that's more normal.

Olivia Abousaid: 49:12

I hate to use the word normal, but for lack of a better term, I'm pacing myself better. I'm not killing myself to prove myself to other people. I am prioritizing my health and what I need to get by versus what's so important for other people. So I think that's been a real positive for me.

Olivia Abousaid: 49:32

It's kind of really brought down that people pleasing and having to prioritize my health and I think, as I've gotten more open and talking with my friends and family about it and realizing more recently that I do need help with things, it's making me reach out to other people and build community in a way that I have not before. You know, when you're feeling healthier and less tired you know I was in that. I'm an independent woman mode. I can do it all, I don't need anybody, and it's actually kind of nice to build these friendships more solidly and to build more of a community, and so there are pluses. I thank you for asking this question. It's a really good question because it doesn't all have to be grief or loss, although that's definitely a major part of it, but there's silver lining too.

Chris: 50:26

I'm going to ask a follow up to that, because that was such a lovely question and lovely answer. Could part of the experience with hope be to get to a point when you fully come to terms with it, where, well, how much of a stretch could it be to think in the future there might be a time where you're actually thankful for this, that this is actually I'm thankful for who I've become because of it? How much of a stretch, how ridiculous would that be, you know, to hope there could be a day you're thankful for it?

Olivia Abousaid: 50:51

So ridiculous, totally ridiculous. No, I wouldn't go so far as to say ridiculous, but it's. You know, it does. That definitely does feel like a stretch sometimes, but it's not out of the realm of possibility. I'm not there yet now, I'll be honest in saying that, but it could be and I feel like I'm on my way towards that now, where I'm learning to appreciate the good changes that it's made, the slowing down that I've had to do and the community building that I've done, and I think over time, over the years, it may get to the point where I'm, like you know, this may have been the best thing that ever happened to me. Who knows?

Olivia Abousaid: 51:37

Not there right now, not there today but, maybe I feel like I am on the way to that, and with every autoimmune disease, acceptance really does have to be part of it at some point. Not just autoimmune disease, but any grieving. You will keep grieving, there will always be grief, but there's an acceptance that comes at a certain point where you're like this is just how it is, let's move on instead of always letting it mire me down.

Chris: 52:07

Well, it's been wonderful to chat, olivia. Thank you so much for your time. There's lots I'm going to take away from this chat, but one of the things I can still. I've still got your voice in my head going who's shutting you, or are you shutting yourself? Got your voice in my head going who's shutting you, or are you shutting yourself? That will definitely be one of the things I take away, but thank you for sharing what you have. We like to end our episodes like this by asking our guests about their herban, so something that you feel like you've nurtured, you've grown in a healthy way that is worth passing on and sharing with somebody else, and we simplify that with the question what's your Herman?

Olivia Abousaid: 52:45

So I love this question. I think for me, my Herman is my empathy, my sense of empathy. I've always been a naturally empathetic person, but it is something that you can still grow and nurture. When you're dealing with any type of grief or trauma or loss, it tends to make you very inward facing and very sort of introspective and it's hard to get out of your head and look and see what's going on in the world. And I have found something that helps me with my grief and in helping other people with grief is that empathy, that sense of empathy Because I don't want to say this the wrong way, I don't want it to come off wrong, but being depressed or in that isolated place can make you a bit selfish, in that it's hard to look outside of yourself and to really be there for other people.

Olivia Abousaid: 53:45

And when you practice that empathy you can then kind of look outwardly and start to ask people well, how are you doing? Something as simple as that is a practice in empathy and to me that both helps that person and letting them know that you care, and it helps you in getting outside of yourself, which is something that's so important to keep practicing and doing as you're dealing with grief and knowing that you're not alone. This is a reminder you're not alone. Reach out, ask someone how their day is going, and that can help you get out of yourself and get out of your head. It's almost its own grounding exercise, in a way. So for me, my Herman is definitely that sense of empathy that I like to pass on to other people, that I hope other people are passing back to me as well as on to other people, because we're living in such a crazy world these days I won't get into the politics of it, but it's a crazy world so I think we need empathy more than ever.

Claire: 54:54

Empathy. How different would the world be if we all had more of that. Thank you so much, olivia, for sharing the losses that come with living with a chronic illness. These invisible losses can be so hard for others to identify or even understand, so we're grateful for voices that want to share what it's like to help others grow in their empathy for people battling with health issues on a daily basis.

Chris: 55:15

If you'd like to find out more about Olivia and her work, head over to her website. If you'd like to find out more about Olivia and her work, head over to her website, which is pact-coachingcom that's P-A-C-T-hyphen-coaching. com or find our show notes for more links. And if you want to connect with Claire and myself or dive into our growing list of 101 different types of loss, you can visit our website, which is www. thesilentwhy. com, or find us on social media at @thesilentwhypod.

Claire: 55:41

You'll also find our newsletter, more about hermans and all of our previous episodes now we have to do a bit that every podcast host dreads but really needs to say if you've enjoyed this episode, please leave us a rating or a review, whether it's on apple podcast, spotify, pocketcast, good pods wherever you listen. If there's a review option, we'd love it if you used it.

Chris: 56:00

It will certainly help new listeners decide if this is the podcast for them, and for small shows like ours, your review makes a big difference.

Claire: 56:07

We've got 14 reviews on Apple Podcasts right now, which suggests that only 14 of you are listening, even though we know there are at least 31 of you out there.

Chris: 56:16

Steady on yes, because the other 17 are on Spotify and I'm 82 on Pocket Casts. Well, that's probably everyone then, and if it is, we love you all, we'll leave you with a quote from author and artist Jonathan Harnish, who's lived with his own struggles around illness and mental health.

Claire: 56:32

"The strongest people are not those who show strength in front of the world, but those who fight and win battles that others do not know anything about."