Episode 60: You Are Enough

Guest: Ijmal Haider

Lauren: Welcome, Ijamla, nice to see you and thanks for being here. 

Ijmal: Thanks for having me. 

Lauren: I'd love to know what your kind of summary of what your health journey has been. 

Ijaml: So I was diagnosed in 2015 with ulcerative colitis leading up to the diagnosis… It was about June or July and I had lost about 25 pounds within a month. You know, it was noticing some changes physically and, to be frank, with like my bowel movements and things like that. And I equated it to stress, but I thought just to be safe, I should go and talk to my family doctor. And he suggested that I go to a specialist. Um, he got me in with a specialist rather quickly. I was in, within a month after she and I met when we spoke, her initial thoughts were, it sounds like you have colon cancer. She's like, but we won't know until we do your scope. And that was in August that she told me that. And my scope wasn't till November. So I sat on that bit of information for months without really telling anybody because one, I didn't want to stress anyone else out and I knew that if I did stress other people, it would stress me out a bit more too. So I kind of just compartmentalized it and put it like in the back of my head and I was like, this is what I could be dealing with, but I don't want to make that a reality yet. I don't want it. I don't want to give that energy. So yeah, I kind of put that to the side until November. And then in November when I had my first colonoscopy ever, we, um, found out that it was ulcerative colitis right away and, and I was put on a bunch of medication. I tried that for a few years, didn't really work. Then I tried naturopathic medicine and I won't say that it didn't work. Um, I think that my illness was a little too advanced for it. It was too far gone at that point. But the thing that I learned through the natural path of medicine was that I got a much better understanding of my body and how it operates. And like it was almost like that aspect of it helped me learn to speak to my body. So whatever was happening within my digestive tract and everything, I was able to look at it and comprehend it. And so then I'd be like, okay, you know, like I ate this and this is what's going on, these are what the functions are that's happening within my body. Cause it felt like in that process somebody actually took the time to teach me about what was happening in my body and how I was processing things rather than just being like taking this medication. And then I went over from that, because it wasn't working for me, but I went back to more specialists. But I went back to them and I was like, okay, I think I'm ready for biologics. So then we did all the testing prior to that and then I was put on to Inflectra, which is also known as infliximab. And I was on that for a year. Around the six-month mark of being on that, I noticed that it wasn't working. Okay. I'm pretty self-aware when it comes to my body and I just knew that it wasn't working. And I had mentioned that it was more like, well, you know, sometimes it's just really slow to work. You just give it a little bit more time to work. Around the 10 or 11-month mark, I was just sleeping a lot. I was also losing a lot of blood that I had become really anemic. My iron levels were down to two. So at that point you run the risk of having like heart attacks, things like that. So when I was put onto iron infusions as well, while I was on Inflectra, or actually I was on the iron pills and then they switched me to, I ended up in the hospital prior to them switching my medication. So last March, actually almost a year ago to the day is when I got out of the hospital and I was in the hospital for a week because I basically failed on Inflectra. Inflectra had made my colon… you know how your colon is on your left side here and mine had inflated so much that it was all the way over this year. So when I went to the ER and they did x-rays, it was like, it had almost like crossed over in the cavity. It looked like the Michelin man and right away they put me on steroids again and then they kept me in the hospital for a week to monitor me and then they switched me off of that. And so I've been on Intivio for a year now. Exactly a year and I'm almost in remission. 

Lauren: Wow. Hey, here's my invisible. Actually I have a real tea up here. Cheers to that. Oh, I have a water bottle. Cheers. 

Ijmal: Thank you. I appreciate it. 

Lauren: You sharing all that and of course have a lot of questions and thoughts. One thing that pops out into my mind is what you just said about having a conversation, being able to like communicate with your body and how just through your story… You've got this relationship with yourself that you're checking in and you're listening to what's going on with the doctors are saying and all of that. But you're also kind of just checking in with yourself and eventually were able to pick up on, Oh, something doesn't feel right here. Something's just not working. That’s kinda neat. Not everybody can do that. 

Ijmal: I feel like everybody can do that. But the thing is, it's almost as if like, when we're, when we are diagnosed with something, I find that we're kind of just fast tracked into the medical system. Usually when you're put into the medical system, it's because you need to be there. So there isn't as much time for someone to give you all the fine details. So it's not anybody's fault necessarily either that we're not given all those details. And then also when we Google things, it can be terrifying. So I feel like I really benefited from just having those conversations with a medical professional who would explain all of those things to me. Because you only get like 15 minutes appointments with your specialist or half an hour appointment with your specialist every few months. You can only go see your family doctor so often. But when I was going to my naturopath, we would have like an hour-long conversation. We would sit there and you know, we talked about what did you eat, how did you react, how do you feel emotionally? Like we touched on so many different things. I am, I'm a really inquisitive person, so I ask a lot of questions as well. So given that I had an hour with her, every time I'd meet with her, I had the opportunity to ask a lot of questions and gain a lot of information. So I think everybody has the opportunity or everybody has the ability to get to that point where they have a conversation with their body. But I think it's finding the right professional that's going to be able to give you that time that also speaks your language. And give you all the information.

Lauren: Sure. Yeah. Yeah. You found kind of a medical team that worked for you and did that take a while or were you lucky? 

Ijmal: The funny thing is, last year when I ended up in the hospital, so December of 2018 so that was just a few months before I wound up in the hospital. My family doctor went on sabbatical for a year and then in February of 2019 which was a month before I had wound up in the hospital, my specialists went on mat leave and they were like my comfort place. And so then the last year, well I've been kind of on the hardest part of my journey and like my medical story, I've been doing it with doctors were just like interim and now that my family doctor's back and my specialist is back, they're kind of like, wow, you had an crazy year and that cause they, they didn't know they didn’t know everything about it. My specialists did come into the hospital while I was there just to see me. But it was just a kind of let me know, okay, I'm passing you off to this guy because I'm about to have a baby. Yeah. So I do have a really great team. I, I've lucked out in that sense, but it's, last year was a little bit challenging cause I wasn't really anyone's real patient so I didn't necessarily feel like I was a priority, you know. But in the last year I've also almost ended up in remission. So there's obviously something to be said about what they chose you mean? Yeah, in the interim. 

Lauren: And it's been a bit of like a trial and error for you. You were on one drug first. 

Ijmal: Well, cause I was on the one biologic and now I’m on my second biologic. 

Lauren: What does that mean? 

Ijmal: So are kind of a low level of chemo in a way. Um, like a chemotherapy and chemotherapy. People will often mistake as being just for cancer. But the thing is it's more about the way that the medication is administered. So I get this through an IV. When I was on Inflectra it was four and a half hours. I would sit there on my iPad or whatever, just watching TV or I would know and I'd be hooked up to an IV for four and a half hours. Now I'm on Intivia and it's about 45 minutes. 

Lauren: Oh yeah. Yeah. Okay. That's how I found you. You had this cool post on Instagram that was half and half picture of you getting an IV on one side and the other side you're like wearing a suit or something. 

Ijmal: Yeah. So the half where I'm sitting getting an IV. That was actually for me in the hospital last year, um, when I was in the hospital for a week. And then the other half is a photo on my business website from a company. So it's just like, yeah. You never, you just never know. 

Lauren: Yeah, same guy. I was really moved by it because it's, I also get my drugs through IV and I do an infusion at the hospital and it was really neat to see this visual. Uh, when I, I kind of feel like, you know, 99% of the time I looked, there's nothing going on with me. But then when I'm hooked up to an IV, it's like this other perception of who I am and I, I, it really has a completely different cultural connotation to be sitting and receiving medication in your veins.

Ijmal: The thing is when it first started for me, I don't know about you, but for me when it first started, it just felt really bad about myself in a way. I was like, Oh my goodness, I can't believe this is what my life has come to like, I'm only, that's how pointed I was. Well 31 and I was like, I'm still young and like this is what I have to deal with all my life. But now, I've found like some sort of empowerment in it as well because it's like I am so grateful for the fact that this is something that I'm even able to receive, or able to get because there's so many different parts of the world where I hear horror stories a lot of people in there like, one, I can afford the healthcare to get those medications. I can't, that we just don't have the means to do that. And I feel really privileged in the fact that this is something that I'm able to have it and it's given me my life back in. It's really, it's just an emotional like rollercoaster of things that you feel for this. Like it's so much less about just myself and so much more about what these drug companies created to help us and help so many of us.

Lauren: I love that because it helps, I dunno. I think it can sometimes feel a little bit isolating. Dealing with your own body. And then when you step out and say, Oh, and there's so many other people dealing with this. Thank goodness, I have access to this care. It kind of gets, gets you into a different zone where you're, it actually sounds really lovely and empowering and connected and grateful. And I also want to say this isn't me saying, well that sounds good, let's just all do that. Cause of course we also want to feel our feelings and like, yeah, feel the frustration, the sadness, the grief, all of that both are possible. 

Ijmal: It's interesting because there's so many times where, and the thing is like the feelings don't go away. So what is it like five years on the road now and there's days where I, we'll be in my feelings and I will feel so awful about where I'm at. But then there's days where I can be like, you know what? Like you've got this like you, I've got this and you can, it's, this doesn't define you. It's something you have, but it isn't you. 

Lauren: It's so true. And I like that normalization. Okay. Yeah. Some moments, some hours, some days, some weeks plus are really hard and to not just say, well that's all there is. And also to see that there are some really great days and know that that's not all there is too. It’s that balance. Cause I think sometimes we get the impression that you know, once you reach this certain level then you're good and that can be actually really alienating for most people because that's not the human experience. 

Ijmal: And then when you think that way, when you do start feeling bad again, there's a long way to fall if you're feeling that way. So there has to be that balance where you know that that you will always have your illness and that it can come back at any point. So that's like the scariest part about it. But that's like something I always have to keep in the back of my mind. It's like okay I feel good today but I have to take it day by day. I can't… tomorrow isn't promised to me in the same way today is today. I might feel good tomorrow and may feel like crap. 

Lauren: How was that way of seeing it impacted how you live your day to day life? 

Ijmal: It's a conversation I constantly have to have with myself cause there are days where I'll get ahead of myself and I'll be like, I wasn't feeling good for like a week. I'm like on top of the world. But then I have to remind myself, okay, yes you are. But that doesn't mean just go eat whatever you want and you know you drink whenever you want. You still have to take those things into consideration because especially now headed into remission, there are things that I'm able to eat again that I wasn't able to. Like dairy, like I love dairy, but like I have to constantly remind myself no, not to overdo it because it's still something that's difficult for me to digest. So I can't just like have milkshakes all day or something, you know? As much as I'd love to. But. Yeah. So it's just being able to not take your health for granted every day and the days that are good still being able to remind you’re just good for the moment. 

Lauren: And I think it's so humbling to know that, like what you said earlier was at any moment it could come back, especially anybody who lives with a lifelong health condition, chronic condition has that awareness especially, and I think you and I are in similar places in the sense that we're both sort of more on the remission end of things, it's humbling to know that even in those strong moments that feel so good and it's like there's a reminder of, Oh, this is how life could be. That it could come back. That's so humbling. 

Ijmal: It's humbling, but it's also a little bit terrifying. You always feel like you can never have both feet in the room yet. The one foot out the door always a little bit. I'm sure there's a way to handle it. I haven't figured that out yet. I'm sure it's, there are definitely people out there that it's fully figured that out. Hopefully. Maybe. I don't know. That gives me hope to, I think that there are, but yeah. For now. I still find that I'm kind of like, okay, like tomorrow am I going to feel like crap? You're always just like preparing. It was almost like I'm still preparing to be in a hospital all the time.

Lauren: Totally makes sense. And when you said it, it can be terrifying. It reminded me that yes I've had those moments. Like even just thinking about planning my future and not knowing like with MS, I don't know what kind of mobility issues I might have down the line. I remember like when I was growing up, I used to love designing water gardens in my graph paper notebook. Like I never made the water gardens. I just was somehow into like got it the books out of the library and everything. And I remember a few weeks after I found out I had MS, I was looking through this water gardening book because it brings me peace and I saw this garden that had this stone path where you are across the stones, across the water and my heart fell cause I was like, I don't know if, in my dream life, if I could even have a pond like that because I could fall off into the water if I have balance issues. Even something like that, that was such a sweet resource for me of dreaming of having a water garden. Really. It was this sad moment. 

Ijmal: Have you visited any water gardens since?

Lauren: Oh yeah. I love water gardens. I love being around water and the truth is there have been times where I use a cane because I’m going to be able to feel as confident walking around without it. And then there, like for the past year plus I haven't needed to use a cane and that's pretty exciting too. There's a lot for me around being near water. Like I walk to the ocean a lot. Yeah. But even there I feel like I could get dizzy and it would be okay. 

Ijmal: It's, it's funny, like these are the things that we end up having to think about now. And for friends who don't necessarily have any major chronic, if they hear me say, well, you know, I'm like worried about this, their minds can automatically go to, Oh my God, no, don't think that way. And it's like, no. Like I have to, I'm okay with it. I’m not thinking that way because it's like self-deprecating in any way. Literally like this is kind of the thought processes that we have to have. 

Lauren: It’s part of how you work now, how you function and it sounds like they think you're doing a worst case scenario thing for the sake of being, you know? I don't know what they think. But often we kind of encourage each other as friends, like, Oh, don't go down that path. It's like, well actually that's more real to me then maybe it would. 

Ijmal: Yeah, exactly. So sometimes people get worried, they'll be like, Oh no, don't think that way. I remember after I was in the hospital and seeing my parents will kill it. Eventually I might need to get like an osteomy bag and I'm okay with that and they were like, Oh no like that. No, hopefully that doesn't happen. I was like, no, like I'm letting you guys hold like honestly. Yeah, like if that's going to get more of my lifestyle then so be it like that's what it is. I have zero fear or shame in it. Of course there's going to be an adjustment period psychologically, physically, all of that, but if it's going to eventually lead me to get my life back, I am a hundred percent on board for it and to anybody that isn't in this community doesn't. I always get that there'll be like, Oh no, no, don't think that way and it's like no I have to, I have to think about those things. Just like you have to think about, okay, if I go into a water garden, what happens if I fall in, and it's not because you’re wanting to think of the worst case scenario as you said, it's because you have to think about those things.

Lauren: Yeah and I don’t want to fall in. And that’s the truth. There is a certain, I imagine protectiveness that your parents had, you know, when you shared that with them and at the same time, the way you shared it sounded actually really lovely. I’ve made peace to some extent. Yeah. With the possibility that maybe one day I will have an ostomy bag. Yeah. How cool is that? Because whether you get one or not, it ceases to be this threat in the same way that it might be to someone who hasn't really started to make sense of it in the way that you have.

Ijmal: Since finding this community online of all these people who are so empowered with their illnesses and they have found their way, whether they have an ostomy bag or not. And having been able to talk to all these people, there's so many incredible people out there who, uh, show me not to be scared about anything, whether it was getting on biologics, whether it was being on steroids, whether it was being in the hospital. Like so many of these people have empowered me in so many ways and those are the things that have helped me make peace with every step that I've had to face so far. Therefore, whether I have to get a bag, I see them and I'm like, you know what? They have their trials and tribulations too. But so many of them have been given back their lives and so many of them are such strong role models that they have gotten me to where I am mentally today. 

Lauren: That's so cool. So these people that you've met who you probably who otherwise would never have met? Wow. This is a circumstance that brings you together. They've really impacted your life. It sounds like.

Ijmal: It's interesting because no, I'm super passionate about chronic illness, mental illness. And I have found myself, like I'm now the president of the Crohn's and colitis foundation, the chapter in my city, and like I'm so passionate about like bringing awareness to this because the thing is like, it's almost like I feel like I owe this back to people who have given me my life back now.

Lauren: Yeah. Like your life has been so positively impacted by people who have been there before you. It's sort of like when you walk any trail in the woods, that's not wild. Somebody created that trail and maintain it. Like people have actually gone forth, spent hundreds of hours creating the trail and I'm like envisioning you saying, all right, I'm going to take care of this trail too. That’s beautiful

Ijmal: Well you're following in their footsteps. Right. And then about two years after I was diagnosed, I was really struggling when it came to like my mental health, I just felt really down about having my illness because to me I was like, this defines me out. Like I just wouldn't go out. I was so afraid to socialize as afraid to kind of be myself. I became a bit of a… I'm a very extroverted person. I love going out and being with family and friends like all of the time. And I kind of, I closed myself off from that and I was seeing a therapist and she said to me, she was like, you, you should start journaling. How about your feelings towards your illness. I was like, all right, you know, I, I was thinking about it and I was like, Oh, I could like start a blog like I am, I'm not one to like sit there and just like write like, like type faster than I write. And I think when I'm writing I started noticing like how my handwriting looks instead rather than typing. So I was like, I'm just going to type it. And then I, I ended up doing this Razi blog on Instagram, not knowing if anybody, like, it had nothing to do with anybody else. It was just like, I'm going to post about my feelings. Maybe somebody will care, maybe someone won’t. And yeah, there were a lot of people that reached out to thank me for sharing my story or they shared their own stories with me. And that's kind of what created that snowball effect for me was I was like, wow, like these people, I can connect to them. Like what they're telling me is exactly what I'm going through right now. And if it's gotten better for them, it's going to get better for me. And then other than there was on the flip side, there were people that were like, oh my god, thank you so much for sharing. I'm in the exact same space as you and aye I haven't told anyone to connect with. So that's where that snowball effect started with Razi blog. And then it's kind of just turned into so many different things that turn into the YouTube channel and then turned into, we're working with LifeBulb and then it turned into working with Crohn's and Colitis Canada. And that's where it's kind of gone. And it's just to me now it's all about creating a platform where I can sing the praises, um, people that have helped me the most. And that's kind of what Hidden Spoons is about too. That in those moments where you don't feel like you have it in me go in further, there are these people who are going to share their stories and tell you how they found positivity.

Lauren: That is really cool and I liked that it all started with you chatting with your therapist and saying, all right, okay, I'm going to do a little bit of self reflection. Look at what would I say if I started to journal or write about how I feel, just putting it out there and you started small, like you didn't start with this huge agenda. It really, the goal was to just be yourself and reveal to yourself simultaneously as you revealed to the world through your blog what was going on for you and you didn't know if it would have an impact. So then to see like one at a time people start to come and say, Hey actually yeah, this is really helping me. It's like you're taking the nutrients from what others have given you and you're doing the same and now you are so, like I have a list of all the different things that you do that you gave me cause I asked you for it. I want to hear about like what was the next thing? Did you say LifeBulb? What was the next thing that you got involved in? 

Ijmal: Yeah. So with LifeBulb it's all about different chronic illnesses and they reached out to me cause they felt some sort of way with things I was sharing as well because I was being very open and very vulnerable and very real about what I was experiencing. Whether it was pain, where there's a mental side of it, whether it was like fatigue, whatever. And for me it was always about ending it on a positive note too. So it wasn't just the biggest thing I find with people with chronic illnesses that we all kind of share is that we never want to feel like a burden by explaining what we're going through. And that was one thing that I was really fearful of when I was started sharing my story was that I don't want to feel like I'm just complaining. I want to be able to end every post with something that I've found positive within the pain. There's always gotta be, there's always gotta be some sort of light at the end of that tunnel no matter what I shared. And so that's kind of where the LifeBulb came in. And then we did a lot of like online content together and they did a little bit of a feature on me. And actually Friday they reached out to me and asked me to come to New York for a workshop. So in May I’m potentially going there for a workshop now to teach people about my story. 

Lauren: So what is LifeBulb?

Ijmal: They focus on like chronic illness and entrepreneurship. So there's a lot of people who, are part of LifeBulb will that come up with programs or plans to help other people with chronic illnesses. And that's the entrepreneur side of LifeBulb. So there trying to find like patient entrepreneurs to kind of create awareness in a different way. 

Lauren: Awesome. I think that needs to exist. So I'm very happy to hear it does. So you created Hidden Spoons. I know that it's an Instagram. Yeah. Is that, how would you describe it? 

Ijmal: So the way that it originated was aye started posting on my own Instagram about people that empowered me. So in my story I would always give shout outs to people that really helped me through that week. And then there were people, that would start following them and they were really interested to hear more about sharing their story. So to me hidden spoons was more about sharing that story. But again, sharing it in the same format that I was sharing my own story. You're the hardships, here's the positivity I found through it. And so Hidden Spoons is less about me, but more about highlighting all the amazing people that are in the chronic illness community. It's not limited to just my illness either because I know that it spans so much further than that. Like we, there's so many shared emotions and shared experiences that across every illness, whether it's MS or whether it's IVD or whether it's endometriosis, like there's things that we've all had like a shared experience. And so that's what it was about. And what we ended up doing was in October of 2018 we held a, I rented out a small opera house and this was all at my own costs. Like it had nothing to do, it wasn't about anything other than I wanted to create awareness. So I ended up selling tickets to get people to come there and we had five speakers talk about their respective illnesses, but it was also about talking about how they found positivity through it. I ended up being one of the speakers and then we had four others and we had a host and we ended up having about 110 people come. And then it was like unreal we had 110 people show up and so many people felt so affected by, we had sponsors for the event. Then we had a Q&A afterwards. And some of the people that came to the Q&A were telling us about how some of them were newly diagnosed with cancers. They, some of them had children who had an illness and they just, we're very appreciative of that type of event because it helps then better understand how they could help their loved ones it helped them understand how they could cope with their own illness and helped them find empowerment and what they were feeling. So it was a really surreal experience and that's where then the Instagram started trying to highlight all the people around the world that with different illnesses that have kind of helped me through my process. And that's kind of what Hidden Spoons runs on. It says Oh these are the people that help me. But it's like if these people are helped me, they're definitely going to help other people. And that's the most important thing for me. 

Lauren: I think that is so awesome. And when you tell the part about everybody who had shown up as the audience that night and saying, Hey, I really needed this in some way. It kind of reminded me that we don't have a lot of examples in the world, the public world, we've got great TV shows and movies and all that, but there's not a lot of media and events that give us kind of a roadmap or at least give us a sense of “this is normal to have a health challenge” or have something going on.

Ijmal: It's all subjective, right? So to me, a cold may not seem like as big of a deal, but to somebody else that can really affect their day and they might be feeling similar feelings that I may be feeling when I'm in a flare up and is totally fine. It’s just finding that between the two experiences and understanding that we will all get through what we're going through, whatever it may be. 

Lauren: The point of connection is this vulnerability of having a body right? Like having a body is pretty inconvenient in a lot of ways and I think there's a kind of sweetness to the fact that, yeah, it's vulnerable. It can feel awkward, it can feel embarrassing. It can feel like we don't want to reveal that stuff, but as it turns out, the more personal people get, like on this podcast, for example, the more people reveal of their hearts and of their challenging moments. The more I get emails in saying, Oh my gosh, I needed to hear that today. So I kind of feel like you being a guest today as a reminder to all of us, that it's a really helpful thing actually to reveal this stuff because it is where we can connect. It's a deeper connection than elevator chats. Yeah. How's the weather today? 

Ijmal: We actually hosted a second event after that. For small children that have illnesses. I felt it was really important to highlight them because although the kids are the ones that has the illness, the parents being the ones make the decisions, like they can be highly affected. Because for me as an adult, I make my own decisions. If I'm going to switch my medication, if I'm going to do this, but as a parent to make the decisions on behalf of someone and if it doesn't go well, the guilt that you can potentially feel it's, I could never imagine, I'm not a parent, but I, I can only imagine what it would be. So I felt it was important to even touch on that because the people who take care of anyone else with an illness are equally as affected in different ways that their thought processes are different than that ours maybe. Like they may not be thinking, Oh my God, I could fall into the water garden, or Oh my goodness, like I'm going traveling and what have I wind up in the hospital. But you know, they have other challenges that they have to think about and it's equally as important. And we want to do another one about spouses of people with illnesses because they are also highly affected and it's, and you know, people often ask me like how are you feeling? How are you feeling? But I think it's equally as important to ask my partner like how are you feeling? Because when things are tough it affects them as well as me. 

Lauren: Absolutely. That's so true. And I think giving everyone in our lives permission to have their own feelings is important, as long as everybody gets a chance to share and be heard, not just the person with the illness gets to share and be heard. 

Ijmal: Cause it's not all about me or you. It's about, it affects a plethora of people. Everyone around us, anyone that's within our inner circle is affected somehow. 

Lauren: So we have our relationships with each other and then we have our relationships with our illness or condition. I'm curious if you could, if you could describe your, how your relationship with yourself has changed from before the condition set in. to now. 

Ijmal: I feel like I've become more confident in certain things. So the thing is that used to stressed me out before are so minute in my everyday life. Like it's like it's not really something worse stressing out over? You know, like I have to weigh that now. And the things that do stress me out are more life changing and less trivial. Yeah. And not to say that what exactly like it's subjective, right? So it's just somebody that maybe the biggest thing they went through, but the things that used to be the biggest things I was going through, just I give zero fucks about them now. And I've become a little, a lot more comfortable with being vulnerable. I'd been a little more comfortable with talking about my feelings. I'd been a lot more comfortable about not hanging onto things because I find when I'm stressed, I feel worse physically with my illness as well. So one thing that friends have even said to me is they're like, we always know where we stand with you because you don't hold anything in. And it's not like I'm just some crazed maniac, just yelling out your feelings all the time. But if something bothers me, I prefer getting it off my chest sooner than later than hanging onto it because that is stress manifests for me and that might be the case for many people and I find there's no reason in my mind why I need to hang on to like dead weight because as you said, having a body in itself, it's really difficult at times and that is enough weight that I've got to carry. I need you to hang onto like added stress or weight of, yeah. Oh, like an argument or a comment that may have bothered me or anything is it's just pointless. 

Lauren: I love that and I love the relief that I feel just even hearing your words because it's reminding me of how much perspective illness can give us. The stuff that you used to worry about that… it's not in your mental workspace anymore in the same way that it used to be and then that frees you up to like care about things that maybe before weren't as important. Like you said, being vulnerable is actually way more important to you. 

Ijmal: The funny thing is I know that before the thought of being vulnerable was like, Oh my God being vulnerable means I'm weak. But me now at 33 five years later after being diagnosed, sitting here being like being vulnerable, it gives me so much power. It's the exact opposite of what I used to think vulnerability was. That totally makes sense and it also makes sense that you used to think the opposite cause we're not taught, you know generally. Although I think now things are changing. But most of us weren't raised being taught to share the unfinished thinking outloud challenges that we have. What tends to be rewarded as I have a, okay, pretty final package with a bow on it and now I can present that to you. Right. It's not very relatable though. 

Ijmal: No, I think also the thing is when I went to school for was sociology, which is a study of people, which is the study of community and all my career, all my life I worked at building communities. So when I worked or when I was in school, I was studying building communities. I came out of school, I worked in the real estate field, literally building communities. It's like I would design them and it would build them and, and it was all about how are people going to utilize this space? What are people going to use the space for? What is this space mean to them? How is this going to affect them? All right? Then we started doing condo buildings and I was like, okay, now we're creating a community that's a high rise. How are these spaces going to be functional or functional for people? How are people going to live here? What kind of lifestyle do they lead? And then when I was diagnosed and now what I'm doing, to me it's about building community. How am I going to create resources for helping people feel empowered or just figure out how they belong here? Where am I creating that connection so people know that they will here as much as any of the rest of us and that they have a safe space. 

Lauren: I love that. And it reminds me of um, well reminds me of a lot of things, but one of the questions that I for some reason just feel compelled to ask you is what questions do you have right now that you're trying to figure out the answer to these days? 

Ijmal: The biggest thing that I'm trying to figure out is… because there's a lot of things that I create or I work on doing and they're like ideas that'll present to people. About like a bigger idea that I have. And the biggest thing that I'm trying to figure out is how do I take ownership of my ideas because there has been instances, whether it was when I started Hidden Spoons and somebody said they wanted to work with me and then they went and started their own thing separately, you know? And that kind of took its own life form. And then, you know, just like it's throughout my career and my life there have been a lot of ideas that I created and given to people and then haven't gotten credit for. That’s kind of the biggest thing because as I'm trying to build all these communities, I'm finding that people reach out to me and tell me they want to work together and then they get all the information from me and then they go and do it. And so we come up with an idea together and then they go pitch it somewhere else as their own idea. And I find out after the fact. So these are all relevant things that I found that, in the last few weeks. Especially about just people that have been like, Hey, we want to work with you. Do you have any ideas of things you want to do? And all right, come up with ideas and then they kind of do it themselves.

Lauren: Without you. Yeah. So interesting too because one of the things you're mentioning to me, well right now you're saying how do I like kinda claim what I'm offering in the world? I just want to say as I sit with you, one of the I notice about how you show up is you uplift others. That’s just how you see people. You see their strength and you have gratitude and you're very open with that. It seems like it probably doesn't compute for you. There's other type of, Oh, collaboration is happening, but I will say sometimes it's hard to see the label from inside the bottle. I love that phrase. I think there's something a bit amorphous about having any emotional skill, like the way that you do. 

Ijmal: The one thing that my partner, she always says to me is that even though like people tend to take my ideas and kind of making their own, they'll never be able to do the way that I do it because they are doing it from the same perspective that I'm doing and not to say the way that they're doing it will be wrong. It'll just be different than the way that I had proposed, like the ultimate vision that I have and where I want to take it to. So not to take away from those people that maybe trying to do what I've, the ideas are given to them, but we'll both just end up doing it differently. So even if they do it as much as it's sometimes it might be like, wow, that was really shitty that they just took that idea and went and pitched it elsewhere. Now they're doing it with somebody else, but yeah, it hurts. But at the same time it's like more power to them cause more voices out there, the better. But at the same time we're never going to be coming at it from the same perspective. So the one thing, as much as I want to figure out how to take ownership, my ideas and my voice, I also have to acknowledge the fact that the people that are doing it, I'm happy that they're doing it. Because ultimately what I want is for everybody to have is a place to turn to because maybe my perspective may not be one that everybody connects to. Well maybe the perspective of the person also doing it like me, they might. Oh that's fine. 

Lauren: Absolutely. And I think you're really speaking to, I think a lot of times people, and I'll include myself in this, well step back from actually creating something because we'll say, Oh well somebody else is already doing it. And I did that before I created this podcast. I was like, Oh, there's already like these three other chronic illness podcasts. So like that's covered. So what am I doing? This is redundant, right? But that's so every single person in the world could host her own podcast and it would be different. And I think that your partner said that to you. That's a nice partner. You can see your brilliance and to, to be able to say, yeah, there will be stumbling blocks and it will get discouraging along the way, but there's nothing that will take away from how you shine your light. Like the way that you show up in the world, your personality, your sense of humor, all of that. So I like this question of, it's almost like a question of do you get to claim what you already are? Like you're already doing it in a way. It's not really a very complete thought the way that I described it, but it's… for me from the outside I'm like you are the thing. Like it's you. 

Ijmal: Well funny thing is I have a client so I own my own creative design firm and we do, Oh cool. Yeah. So we do um, like renovations for people. We build houses for people. We will you do anything from like furnishing your house if you want to like building it from the ground up. So that's one thing I do. And one of my clients, she's like a motivational speaker. I was working with her around the time where I was really sick. It would have been like the end of 2018 became 2019 before I was hospitalized I was talking to her about my first Hidden Spoons event and she was like, I'm not going to be able to make it cause I do have another event that day, but I just want you to remember that you are enough and that has stuck with me for so long. And that is something that I know repeat to other people because the power in those words was something that, it like gave me chills when she said it because to realize what you're doing is enough and it's the most you're able to do at any given moment. Your output is exactly what you're able to give that moment in your life. And that’s where I was. Yeah. Just incredible. 

Lauren: That's so cool. I want everybody listening to this, hear it and take it in, you know, like there's a simplicity to it and it can be also very disappointing that like I didn't do very much today, but that was enough. But I thought I was going to do more, you know, or whatever. And the truth is when we get, when we create the piece of truly, deeply knowing in our bones, Oh, I am enough. We're not in a place of having to prove it anymore.

Ijmal: But also we have to remember that you know, if there's going to be days where you may not do as much as you did another day, and that's okay because that day you were, you know, cause that is all you were able to do. Whether it was time restraints, whether it was health related, whether it was like unforeseen situations that you weren't expecting. You did as much as you possibly could that day. And one thing that I always say, too, is that I don't believe in competing with anybody else. So I will never hold a mirror to somebody else can say, how come that person gets that? And I don't? How come that person, how come they have this? And I don't. For me it's always about competing just with myself. What was it that I have done in the past? And how can I improve on it? How can I do it differently? How can I work at perfecting it? Nothing's ever going to be perfect. How can I work at making it better than the last? And that's something I’ve carried throughout my entire life. And I think that comes from my dad. But it's just all about you need to only focus on you. As much as there's all the outside influences you can take from them and, and gather from them. But at the same time you have to focus on what it is that you're bringing to the table because you're the only one at that table. 

Lauren: Totally. It's like asking people what they want from you versus asking your heart what it longs to create. And I know that sometimes it can be a business strategy to say, well, what do my ideal clients want? But in my opinion, just do what it is that you longed to do, even if it doesn't make sense to anyone because it's what makes the most sense for you to be doing. And I love that. I love that your friend said you're enough. I love this whole conversation cause I think it's getting into a little bit more of the nuance of what happens psychologically when we start showing up in the world is, Oh, well how am I seeing? And like who am collaborating with and who can I trust and how do I make sense of how I'm showing up? And I think that there is a lot more kind of chronic illness leadership in our generation. I think there's a lot more public than it's ever been to have a health challenge. Like it's more accepted now. It's not completely, but I think these are some of the questions people are going to sit with, so I bet a lot of people listening are going to relate. 

Ijmal: Yeah, exactly. Even if just one. That’s all really matters. It's like I've always been about, okay. Even one person feel some sort of way about what I'm doing, whether it was what the YouTube channel or with Hidden Sppons or anything. It's just kind of like if one person helps them get through their day, then we did our job. That's how you started. I

Lauren: I love that, that first blog that, you started to write, we’re coming back to the beginning. 

Ijmal: Back then the one person was just me. It's like, if I can feel better from this, then great. And now it's like if I can make it at least one person feel better about themselves a day. 

Lauren: I love that. Yes. And that it's just like going right back to the heart every time. What does it mean to you to live a fulfilling life? Has your definition of fulfillment changed as a result of your health journey?

Ijmal: So what it means for me to live a fulfilling life is to help others and I think that's, I don't think that's ever changed in my life. I think that's always been something that I've wanted to do. I think I have figured out how I'm going to do it though. Even like when I was in university, I was always like, know what? I just want to like go somewhere and build houses for people. I would just want to, there were always thoughts in my head about, you know, like I have been blessed to have like a fairly good life. To get a life that I'm proud of and I don't want to just sit by and be like, okay, well I've got this life, this is great. Kind of like what can I do with it? Like if I have a platform, if I have any kind of way to help people, that is all it comes down to for me. And being that like Razi blog has grown and it's kind of given me a bit of a platform, the biggest thing for me there is that it's no given me a bigger voice to then help people. That's really what it comes down to. 

Lauren: That's fulfillment for you is that knowing that you're helping other people. And I noticed that you didn't say helping 10 million other people, you're just saying helping other people. 

Ijmal: Yeah. It's not about a numbers game. And even with like Instagram for a lot of people it can be about a numbers game, how many followers you have? And there's nothing wrong with that. That's, that's the way that they look at it. For me it's like me, I love the engagement of Instagram. I love talking to people in there. Like I'll ask questions on my story just to get people's perspectives on it because I want to actually engage with all of these people. They all have something to bring to the table and I'm so curious. As I told you at the beginning of this interview, I'm very inquisitive so I always want to know about, I just want to know about people, an extrovert and inquisitive. That's what it comes down to. 

Lauren: I love that. And I also will say that I love the Instagram engagement and like seeing people make a comment that Oh Hey this was helpful or here's my opinion on this thing or asking questions in the stories. I love people's responses. That's like one of my most favorite features too. Yes. 

Ijmal: Or when people share their stories with me. I feel so honored when someone shares their story with me online because I'm like, you took the time to type that out and to like just you felt I was important enough for you to share your story with me.

Lauren: Oh, I love that way of looking at it. That's so cool. Do you have any funny stories from your health journey? 

Ijmal: There's been a lot of like weird stories. I mean like whether it was when I was first diagnosed and I was dating and it was just trying to navigate because I get at that point I was like newly diagnosed too, so I hadn't figured it all out. There'd be times where I'm like, Oh man, I really need to go to the bathroom but I don't like I don’t want to tell this person, I need to go to the bathroom. Like that's embarrassing. Like I hadn't been completely comfortable with it at that. I mean like here I am now a podcast. Now I look back at it and I was like, I just basically tensed up my entire body. Cause I was like, no, this data's is too good and I can't, I just have to like deal with it. And then the drive home I felt so awful. But, but you know, like that, those are funny stories. Or like the thing is like a lot of the stories aren't necessarily funny, but I find the humor in them. So there's been times where like I was getting a colonoscopy and I woke up in the middle of it and that was just terrifying. But at the same time, a hilarious cause all I remember is everyone being like, Oh my God, he's awake, he's awake. And then rushing to like put me back under. Yeah. Yeah. 

Lauren: Oh my gosh. It does sound kind of cartoonish to hear people, you're in the room and they're saying, yeah, he's awake. You're like, I'm right here. You could just say, yeah, it's me. Yeah. 

Ijmal: So there's just like funny things that have always happened and it's a matter of how you choose to look at them. So, I mean, there's things that I could probably be really embarrassed about and now, I'm just kind of like, what really? That's funny. That's just what it is. I can’t control. Like I don't fully have, I don't have full control over what my body decides it's going to do, in the sense of like if I'm going to bloat all of a sudden I'm super uncomfortable and I could be on a, date, you know, like at that point I was like, this is so embarrassing. But it was like, okay, well now if that happens, I'm like, okay, well I'm going to go to the bathroom guys. Bye. Yeah, yeah.

Lauren: Totally. Yep. Yeah, I like that there's been that transformation and yeah, looking back at some of these stories, I totally get what you mean about, some of them are kind of funny because of the way that I look at them. I see humor as such, ah, relieving aspect of being alive, getting us through some of the hardest moments, like truly the moment when you were talking about you're getting the procedure done and you woke up… very terrifying in the moment. And it could be a scene from a really funny TV show. Both. 

Ijmal: Yeah, it's just about how you choose to look at it. Even in the hospital when I was in there for a week, as scared as I was, for me, it was all about making the nurses laugh. So they like, they always like just came in just to visit and even after I left there, I like went back. That helped me get through the process. So when I was in the hospital the last day and a half there, they said, okay, cause I was in a ward where everybody was quite elderly. I was the youngest, I probably 40 years, someone needs a bed. And since you're the most mobile on the floor, is it okay if we move you out to the hallway? And I was like, Oh yeah. Like if someone needs my bed 100% move me up to the hallway. But it was the room where everybody comes to watch TV. So just me and my bed. And then, and then there's like, no, like bell to call the nurses or anything. So they gave me a bike bell. On the hospital bracelet. But I would just like shake if I needed anything and you know, like my family and my partner, they were all kind of like upset about the fact that this is what was going on and I just, I thought it was hilarious. Some of the people would walk into what was my room quote unquote, right? And be like, what are you doing here? I want to watch TV. And I was like, I'm sorry. Then they would just be really upset that it was there. But that's what it was like. It was my room. And it was funny that it was inconveniencing people. It's, even though they had TVs in their room, they were just like really visually upset that I was there. But at the same time I was doing it to help somebody else. You did a room, right? So you're going to be upset with me, but I feel like I'm doing a good duty or like, but it was just …

Lauren: You're trying to be giving, you gave up your room now people are like, what are you doing in my TV area?

Ijmal: And it was just funny. So like those are the things that happen that are funny. I love it. 

Lauren: What do you have now that you might not have had without your health challenges? 

Ijmal: Confidence. Confidence to help others. Confidence within myself. Confidence to be unapologetically myself. 

Lauren: And it's so cool that you say that because I think that the fear for a lot of us is that a health challenge will take away their competence and that's not what you have found. 

Ijmal: I'm sure there are days. I can for a fact say that I'm more confident today in who I am than I was prior to my diagnosis. 

Lauren: That's awesome. Finish the sentence. This is not what I ordered. 

Ijmal: Please take it back I don’t like it. 

Lauren: Well, thanks so much for joining me today. 

Ijmal: Thank you for having me.