Join Sarah Noll Wilson and guest Neha Sampat as they explore topics related to chronic illness, and Neha shares from her personal experience living with chronic migraine.
About Our Guest
Neha Sampat, Esq. is CEO and founder of BelongLab, where she creates cultures of belonging into which everyone can bring more of their true and best selves. Through consulting, speaking, and writing at the intersection of inclusion, well-being, and leadership, she helps organizations address hidden barriers to belonging, such as internalized & unconscious bias, toxic positivity, and wellness challenges.
She is an internationally sought-after expert on inclusive leadership and disrupting Imposter Syndrome, and she runs the top-rated “Owning Your Value” programs to cultivate evidence-based confidence and nurture authenticity. In her work, Neha leverages her experience working as an attorney at both large and boutique law firms, her tenure as dean of students and leadership professor, and the joys and struggles of “mama”ing her two kiddos.
Neha’s insights have been featured in Harvard Business Review, Time Magazine, Thrive Global, and numerous other professional publications, podcasts, and media. Neha holds BAs in Sociology and Political Science from University of Illinois at Urbana-Champaign, obtained her JD from UC Berkeley School of Law, and received her Certificate in Graduate Applied Psychology. Neha works across industry, from Microsoft to Pixar, and UC Berkeley to Leadership Council on Legal Diversity.
You can learn more about her work at www.belonglab.com and https://bit.ly/TheBoxBreakersNewsletter. You can follow her on TW/IG/FB at @belonglab and on LinkedIn at https://www.linkedin.com/in/nsampat/.
resources mentioned
Neha’s recent essay on community support (mentioned in conversation): https://themighty.com/topic/migraine/community-support-with-chronic-migraine-conference/
Transcript
Sarah Noll Wilson
Hello and welcome to this week’s episode of Conversations on Conversations where each week we explore a topic to help us have more powerful conversations with ourselves and others. I’m your host, Sarah Noll Wilson. And joining me back is my dear friend Neha Sampat where we will be exploring how to support yourself and how to support others who might be experiencing a chronic illness. But for those of you who haven’t listened to Neha’s episode from last year. Let me tell you a little bit about her. Neha Sampat, Esq. is CEO and founder of BelongLab, where she creates cultures of belonging into which everyone can bring more of their true and best selves, through consulting, speaking and writing at the intersection of inclusion, well being and leadership, she helps organizations address hidden barriers to belonging such as internalized and unconscious bias, toxic positivity, boy, we need to do a session – we need to have a conversation on that. Maybe that’ll come into play here (laughs), and wellness challenges. She is an internationally sought after expert on inclusion, leadership and disrupting impostor syndrome. And she runs the top rated Owning Your Value programs to cultivate evidence based confidence and nurture authenticity. And I’m going to continue because I want to give you the full like gamut. So in her work, Neha leverages her experience working as an attorney at both large and boutique law firms, her tenure as Dean of Students and leadership professor, and the joys and struggles of mumma-ing her two kiddos. Neha’s insights have been featured in Harvard Business Review, Time Magazine, Thrive Global, and numerous other professional publications, podcast and media. Neha holds a BA in Sociology and Political Science from University of Illinois at Urbana Champaign, obtained her JD from UC Berkeley School of Law and received her Certificate in Graduate Applied Psychology. Neha works across industries from Microsoft to Pixar, and UC Berkeley to Leadership Council on Legal Diversity. And I’m, I’m so excited to have you back on the show Neha, also just for those of you who are interested, Neha’s episode from last year is still one of our top, I think you’re like number six, like –
Neha Sampat
Wow!
Sarah Noll Wilson
Top episodes downloaded when you and I spoke on impostor syndrome.
Neha Sampat
That is so cool. Well, I have to share something back with you.
Sarah Noll Wilson
Yeah?
Neha Sampat
I have a wonderful, amazing person working with me at the moment who’s going through a lot of like, the past podcasts videos, like all sorts of, you know, essentially content that we’ve created. And last time I spoke with her, our conversation was her fave.
Sarah Noll Wilson
Aw.
Neha Sampat
So she was like, oh, there’s so much in that. So they’re, they resonated with a lot of people on a, on a deeper level than I think we often, we often allow ourselves to engage in. And, you know, I certainly feel that way when I listen to it again. So I’m so excited to be back. And I’m so excited to get to talk with you, Sarah. You, you have, you have a gift, you are a gift.
Sarah Noll Wilson
Aw. See, we’re just gonna be like periodically pausing and smiling.
Neha Sampat
Yes.
Sarah Noll Wilson
And like getting a little like misty eyed because it’s been way too long since we’ve been able to connect.
Neha Sampat
It has.
Sarah Noll Wilson
So you know, just welcome everybody to Neha and Sarah time as we reconnect. Well, you know, talking about the imposter syndrome, that, but one of the – gosh, it’s still like, I get goosebumps. Not in a good way. But I get like a really visceral reaction when I think about that insight you brought, which is, we struggle with impostor syndrome when we’re working in an environment that wasn’t built for us.
Neha Sampat
Yeah.
Sarah Noll Wilson
And I can’t tell you how many times I’ve quoted you or shared that. And, you know, people have all kinds of, you know, shapes and sizes and experience, they will just pause and, and I can see the shift from them thinking there’s something wrong with them.
Neha Sampat
Yep.
Sarah Noll Wilson
To realizing the system wasn’t made for them. And just this sort of release of possibility. It’s, it’s always just hits people so powerfully of, oh it isn’t. There’s not, there’s nothing wrong with me.
Neha Sampat
Yeah, yeah, I think you know, now there’s so much talk about the terminology around it. Like there’s, you know, this whole like anti impostor syndrome campaign. Some of it is like, it doesn’t exist, which I disagree with. And some of it is like, problems with the terminology. Like the clinisizing, I’m now probably creating a new word.
Sarah Noll Wilson
Yeah, I like it though.
Neha Sampat
Right and but, you know, I always say, we all have different experiences of how language you know, hits us and for me when I first heard the term imposter syndrome, there was something about syndrome that actually comforted me. And I think it’s part of what you’re talking about. Because I was like, oh, this is broadly enough experience that it’s actually called a syndrome. Like, it’s not just me. That was, that was completely life shifting for me to kind of realize that what I had been living with my whole life and much of my professional life was a thing, like a quote unquote, thing. So I think that’s such a huge part of it. I mean, I think it’s one of the most profound steps we can take towards addressing self doubt within ourselves and within one another is to just normalize it, you know, and to realize that, not to compound our bad, the bad feelings it makes us have, with the guilt of it’s my fault I have this.
Sarah Noll Wilson
Yeah. Yeah.
Neha Sampat
It’s not your fault. It’s just, it’s systemic. It’s systemic, it’s systemic.
That needs to be on a shirt, just,
Oh my gosh, you’re so right.
Sarah Noll Wilson
It could apply to so many, to so many, to so many things that we talked about. So okay, Neha. So we’re talking today, and you know, everyone who’s listening, you’re going to, you will hear more about Naha’s journey, but start, start us back in your journey of navigating chronic migraines. You know, I know that I when, because when you and I first – yeah, I just, I want to hear the like, your journey to this point. And then I want to dig into just what what that experience has been like, what’s it been like from a standpoint of, of your own resilience and navigating? What is that meant for people who are supporting you or not knowing how to support you? Right? So we’ll dig into all of that. But, but but take us back and help us understand what your journey has been navigating chronic migraines?
Neha Sampat
Yeah, thank you for asking. And I want to just say, first, what we said off air that I think needs to be said on air, which is, thank you for creating space for this conversation. Because societally, we do not create space for these conversations, and whether disabilities and diseases are apparent or non apparent. They are further invisiblealized when we don’t create space to talk about them. So I really think that just even having this conversation, providing access to this conversation is a huge step in the right direction. So thank you. My journey. I will tell you this, I am still, I am still figuring out my journey. I’m still on the journey of understanding how did I get here? So I’m a little, I’m kind of sharing. I may realize things about myself as I’m sharing. It’s gonna be like a therapy session.
Sarah Noll Wilson
Sure. Yeah.
Neha Sampat
So okay, I had episodic migraine like really, really sporadic episodic migraine. You know, most of my life I would say, possibly had like migraine as a kid that was manifesting as abdominal migraine. I, we didn’t know what that was then.
Sarah Noll Wilson
I don’t know what that is now.
Neha Sampat
But I guess that’s migraine can manifest in kids as abdominal pain.
Sarah Noll Wilson
What!
Neha Sampat
Yeah. And I used to get these bouts of abdominal pain that had like, there were just mystery bouts of abdominal pain that would come and go.
Sarah Noll Wilson
Interesting.
Neha Sampat
So it’s impossible that was migraine, and then it turned into kind of the more classic manifestation of migraine, as you know, I got into adulthood, but it would be like a few migraines a year and they were like take an Excedrin, it’s, it’s fine. Like, it was totally not cramping my style, you know? And then this is a little bit hard for me to talk about because I always wonder like, are my children gonna listen to this, go back and listen to this podcast someday when they’re grown. So unfortunately, it was having children and the process of having children that for me, cronisized what was an episodic disease for me. So we think it was hormonally, the hormone shift actually pushed the migraine to become chronic but there they don’t know a lot about migraine. There’s a dearth of research on migraine especially because you know, it’s a diseases mostly suffered by women and we see sadly, you know, gender bias play out in what what research is funded. But that’s for another podcast episode.
Sarah Noll Wilson
Yeah, we could go on this forever.
Neha Sampat
(speaking together) Systemic, systemic, systemic. Exactly. So I started to have daily migraine after I stopped nursing my first child, and then when I became pregnant with my second child, it went away. When I stopped nursing, the second child, daily migraine returned and the severity of the migraine was much higher to the point that Excedrin couldn’t touch it and so, it took me a long time to make my way to the right doctor. I shouldn’t say make my way because it wasn’t on me. It took a long time for the system, the system, to the system to send me to the places that actually could help me. You know, it was all like this, there’s this whole experience of being disbelieved, as a woman as a woman of color. There’s experience of minimizing that I experienced, both directed towards me from the medical profession, and also coming from me, this like self gaslighting, this, like, it’s not so bad, just push through it, it’ll get better, mind over matter, you know. And so I kind of languished in some way even though I was doing a lot to try to get this treated. It took some years before I was finally sent to a Headache Clinic, which specializes obviously in headaches. Then I was misdiagnosed for I think a year or more and put on a daily medication that’s not good for you and ended up being the wrong medication. Finally, switched doctors, got the proper diag – what we think is the proper diagnosis of chronic migraine, and have gone through different eras and treatment. It took a few years for the right treatment to be found, and for it to work. And then I had a glorious, maybe two years of not having daily migraine, of feeling, like having pain free days, which was, oh my gosh, I mean, I swear my neighbors would see me skipping around the neighborhood, on my daily walks, because I was like high on not being in pain. I was literally, I felt like I was high. And so it was it was just a glorious window. And unfortunately, that window closed, December 2019. And since then, I’ve been back to daily more severe migraine, and we’re still trying to figure out, you know, what’s, what’s happening. So the journey has been very, very kind of, it’s been very difficult throughout. And it’s become more and more of a psychological journey as time has gone on. I learned this term chronic illness, burnout. And I was like, Holy shit, I totally have that. I totally have that. And so there’s all these aggregate pieces, like once you add up all the parts, the sum is much greater than the parts. And that shit has been hitting the fan for me, particularly over the past year and a half year or so. That like my body has been breaking down from the stress, from the experience of chronic pain, my psyche, you know, my mental and mental health has been breaking down. It’s taken a different toll, as I’ve been on the journey of reckoning with it in a more honest way with myself and in a more honest way with the world around me.
Sarah Noll Wilson
Yeah, there’s – first I’m so grateful. I’m so grateful that you’re here and willing to share so honestly. And gosh, I have so many there’s so many paths that I’m curious about. So first I want to, I want to start because I know there are people who are likely listening who maybe have never experienced a migraine. And that point you made at the front of our conversation about is particularly when a disability is invisible.
Neha Sampat
Yeah.
Sarah Noll Wilson
How much that can be dismissed or minimized, you know, whether it’s because of your lived experience or because right like as a woman, a woman of color going to the doctors and just – so help us understand for those who haven’t and you know, and I sit there and I think I remember in college, I would get them really bad and then I don’t want to like knock on wood magical thinking but haven’t but how do they manifest for you? Or how would you describe what they’re like to navigate day in and day out?
Neha Sampat
That’s a great question. And I’m in the process of trying to ungaslight myself, which is which I’m not actually through with so I’ll I’ll do my best. But I may not be getting it all truly accurate because I’ve been in survival mode and in survival mode we do whatever it takes to get by and sometimes that does mean minimizing you know. So I’ll tell you what happened recently. Recently, I got a new treatment. And it seemed to – it’s not a permanent treatment, it’s a temporary treatment. It actually seemed to make it it did I really believe it made a huge difference. Like it really, it helped me cross the line between not living and living which is everything right and so I had about a month of feeling better and by feeling better, I don’t mean that I didn’t have magically all of a sudden didn’t have migraine every day. I still had daily migraine. But I’d have one or two days a week that it was severe and the rest of the days it was like truly mild. And a realization that I had that’s painful for me. Emotionally painful is that now that I saw what truly mild was there was this whole recalibration that happened, and I was like, holy shit, all that what I was calling mild the past years, it was nowhere near mild. I mean, the amount of pain I’ve been living with, like, I look back, and I’m like, I, I don’t know how I made it through a day like that, I don’t know how anyone makes it through even a day like that. And yet, I kept making it day after day after day. So I can tell you, you know, how it manifests for me, but it’s such a systemic disease with systemic, it’s gonna, this is all about systems, apparently. The body system.
Sarah Noll Wilson
Internal systems.
Neha Sampat
Societal system, the system, the system, so I, but migraine manifests very differently for different people. So I want to really be clear with everybody that don’t take what you hear from me, and assume that’s how it manifests for other people. It is a systemic disease that’s rooted in a complex neurological disease. So for me, it’s changed over the years. But how it currently manifests is, first of all, it’s just this feeling of feeling migrainey. I don’t even know how to explain it. But I realized now that I’m back to feeling crappy again, that I always have this feeling, you know, that it’s that it’s always there, it’s like, almost like an ache in my eyes. And that I just get so used to that I don’t even realize it’s an ache anymore. I realize another realization once I felt better for a month, and now that I’m feeling worse, again, is that I used to say to people, it hurts to move. So movement is a trigger for me. Which means like, you know, if I drop my pen on the floor, reaching down to get it would make me feel ill, and would actually increase my pain or could actually trigger head pain, and other symptoms. So even like bending down, so I travel for work, as you know, and as you do, so imagine the process of like packing and unpacking, lugging your crap around an airport, going through security, like it’s movement, movement, movement, movement, movement. Getting in an Uber or Lyft, the motion, like, everything makes me miserable. And I had to learn from my pain psychologist, you know, you might only be able to pack for five minutes at a time. Now imagine, imagine, and I started doing that. Imagine if you can only pack, you pack for five minutes, and then you lie down for 10, you pack for five minutes, and then you lie down for 10. Like, that’s the nature of the shifts that I’m having to make. And I’ve had to make in my life, that’s the that’s the nature of the time we lose, right? How long it might take me to do something because of this illness. So motion is a big trigger for me. And what I realized in the past month that it’s not just like my body moving, like bending down to get something, it’s actually even my eyes moving, which you know, in conversation and my eyes are constantly moving. So it’s essentially constant, it’s there’s pain that can happen on one side of my head, and then it can instantly flip to the other side. I get a lot of neck pain and tightness. So I get a lot of pain in those areas. Nausea, was one of my big is aura. So my vision, I become very light sensitive. To the point that when it’s bad, I don’t even leave the house, because I can’t be in the light. And also the movement, even just like walking around will make it worse. But I’ll miss parts of my vision, like there’s pieces that will be missing. And that happens to me on a daily basis. So I don’t even know I could probably go on and on. But those are probably, probably the biggies, the actual pain in my head and neck, the vision and scent sensitivity. I can smell like a super smeller and smells like make me really, really ill. Sounds really bother me. So there’s this heightened sensitivity that happens with that as well.
Sarah Noll Wilson
How do you that, you know, I really appreciate you naming so explicitly like the amount of time because again, you know, I go back to it’s not invisible for you. But it can be invisible for the rest of us. And the thing that I know is, you know, through my own experience with navigating chronic mental illness, with working with other people who have various different challenges, disabilities, that you do become really good at, to some point, masking. That people won’t, like you won’t realize that I’m having a conversation with you and I’m in incredible pain or I’m having a conversation with you while I’m having just hundreds of intrusive thoughts for my OCD or I’m having a conversation with you. Right this and this and this.
Neha Sampat
Yeah.
Sarah Noll Wilson
So I appreciate you talking about just that like the battery drain but also just the physical time that it takes. I’m curious, and like, what your experiences as you’re riding these waves of feeling like, oh, I’ve had a good good month. And this that like resonated with me because on my own journey, I’m trying to like work on like, I don’t want to call things good day, bad day.
Neha Sampat
Yeah, yeah. Right. Totally. Totally.
Sarah Noll Wilson
Because it’s like, it’s like, oh, man, I had a good couple of days. And now it was a bad day. And Nick and I, he’s been really good about pushing me on that of like, is it? Is it a bad day? Or was it just a harder day? You know, and so it’s like, today was just a harder day to navigate that. So what is that? You know, what’s, how do you respond to those? When you because when you’ve been and I don’t know if this is true in your experience, but sometimes I think when you’re navigating something chronic, and you have like a good couple of quote, unquote, good days, whatever. And then what it it rears its head again, you’re like, fuck.
Neha Sampat
Yeah.
Sarah Noll Wilson
Like I thought, I thought I was on. And you forget that like, well, that is still progress.
Neha Sampat
Yeah.
Sarah Noll Wilson
Right. Like, so what? How do you show up in those moments when when you feel like,oh, I think I’m having a relapse or whatever language you use.
Neha Sampat
I do find it hard to say I’ve had a good day. Or a good month. And so lets, okay, bring me back to the second question. Let me answer this one first. Okay. So my struggle with with good day, bad day is what you expressed. And also, what just happened in our conversation where I was like, okay, so I had a, you know, I was feeling better for a month. But I don’t, but then I had to, like, qualify it. I had to be like, but I still had daily migraine. I still had two days that were severe, right?
Sarah Noll Wilson
Yes! Yes!
Neha Sampat
Because people are dying. People are dying for me to get better, –
Sarah Noll Wilson
Or to get over, or to or I would assume, get over it.
Neha Sampat
Get over it. Exactly. Let’s be real. Yeah, totally. And so I know that any evidence I give of things going better, are heard by many people as I’m okay now, and I don’t need their help.
Sarah Noll Wilson
(exhales)
Neha Sampat
And that’s, that’s, that is not true. And it’s so hard to – I don’t have the energy like, I finally am feeling better, doesn’t mean I have like a bunch of spoons. I’m in a massive spoon deficit. And I’m just now not draining spoons at the rate I was. So I don’t even have the spoons to be like, okay, but I still have daily migraine. And you know, but I feel like, I have to, I’m forced to express that. Otherwise, I will not only lose the understanding that being seen, the support I need, you know, but I think it’s both. I think it’s losing being seen and understood for what is really happening for me, and it is losing the support I need. I think it’s those two things. So there’s that piece of it. So that’s, that’s one piece of the feeling good part, like saying that I’m feeling good or doing better that is very complicated. It’s just not that simple. And the world around us wants it to be simple. And it’s gonna push, push push us to make it simple, to make it more comfortable for them. And struggle, suffering. Those are things that we as a society are very, very uncomfortable with. So that’s where I think it’s seated. Now, the second question, remind me if you remember,
Sarah Noll Wilson
Well, it’s just like that struggling to name something as a good day.
Neha Sampat
Yeah. And like how do you reckon with when then it goes from?
Sarah Noll Wilson
Yeah, when it goes good, good.
Neha Sampat
Good to not good. Yeah, so I’m in the, I’m in that moment right now because I had that month that was better. And now I’m back to shit. And I realized exactly how shit, not exactly but I better see how shitty that shit was. So in a way the fall feels worse because I’m like, holy shit. Like, it hurts to move my eyes. Like this is not, I am not in mild pain any day anymore. And so it’s um, it’s one of the hardest things for me with the my experience of my chronic disease and of my disability is how do I, how do I navigate hope, expectations and despair? Like how do I navigate those and it’s this I find a lot of difficulty in – this is where we plug in toxic positivity my friend.
Sarah Noll Wilson
Yeah, yeah.
Neha Sampat
Because we, you called it you knew we would plug it in. That like resistance that society in our culture has to seeing the full breadth of the human experience, which includes suffering and struggle for every single one of us. You know, that discomfort and that kind of push, that toxic positivity push. Those make it harder for me to live my life in a way that I can mitigate my suffering. Because here’s an example, I hung out with a dear friend of mine who I’ve known for forever. I mean, she just a very dear dear person, who is one of the best listeners, most supportive people I know. And I hung out with her, just as I was starting to go back down that hill again, and I suspected shit. This, this is not an anomaly. This treatment is wearing off, I’m going – my window is closing. But I didn’t, wasn’t able to express it yet. Like I just kind of had that suspicion.
Sarah Noll Wilson
Yeah.
Neha Sampat
And so, you know, she was asking me, like, how’s it been going? And I was telling her, like, there’s so much better. But you know, this is a temporary treatment, I could feel worse today, I could feel worse a month from now. Like, it will end the treatment’s impact will end. And she advised me she’s like, well, you know, I find it that it’s not worth like buying trouble from the future, you know, like, because then I’m even ruining that moment where I’m actually feeling better by worrying about the future. And I was like, yeah, I see what you’re saying. And, you know, a little bit later in the conversation, she apologized, and she said, “You know what, I’m so sorry I said that. I didn’t mean to sound condescending.” And I was like, you know, it didn’t it wasn’t condescending, but by her, like bringing it up again. And I think she realized there was something that didn’t quite align with me on it. She gave me a window to clarify. And so I shared with her, the thing is my friend, I have to be aware that this is going to end because I’ve learned the hard way that if I just sit here basking in hope, and don’t prepare myself for the eventual turn, the impact that has on my mental health, when it inevitably does turn is way, bad, way, way, way, way bad. I cannot afford that. And so I have to accept this tax of enjoying my window, you know, to brace myself, because if I don’t brace myself, the fall can be fatal. You know, it sounds hyperbolic. But it’s not. It’s not it’s not.
Sarah Noll Wilson
Well, I think there’s a difference between accepting that things are temporary. And using that as a guide to say, I’m going to really savor this. Because I know that things can shift and change, which is different, I think, then, you know, what people may perceive as pessimistic, right? Like, I look at that as realistic, right, you know, pessimistic is like, oh, I’m just waiting for the shoe to drop. I know what’s going on. Right? Like, and you get almost into a rumination mode of when’s it gonna hit versus just like an acceptance of reality, to me, it’s just an acceptance of all of our emotions are temporary, all of our lived experiences are temporary. And so when things are good, then I celebrate it. And I go, and I say, I tried to savor it. Because I know that it’s temporary, right? Like, just to be present with it. And I and I so appreciate you sharing that example from the standpoint of one what is it look like to maybe go back and go? I don’t? I don’t think that I don’t know that I communicated what I wanted to or I think I did. And then that wasn’t actually what you needed to hear. And because that, oh, man, I I’m sure you you could list off the things people have shared. And like, just look at the bright side.
Oh gosh, bah.
At least you don’t have, like insert, insert, just just, you know, be grateful. But I go back. Gosh, I go back to the words you used. How do I navigate hope, expectations and despair?
Neha Sampat
Yeah, I think you hit the nail on the head for me. And I use that terminology all the time in trying to explain to people, including my family, I come from a lineage of toxic positivists. And it is really, really hard because me having to be a realist has actually created a wall between me and my family. So I’ve lost belonging in my own family of origin. Because we just don’t connect on this, you know, and, and so I’m constantly using that terminology. It’s like, yeah, there’s a difference between pessimism and realism. And I am by nature, a glass half full person. It has not come easy to me to become more realistic. It has been one of the most difficult things I’ve had to do in my life is to become more of a realist. I’ve gone down kicking and screaming, you know, but I’ve had to, I’ve had to become more of a realist. And it’s something that I don’t I think you’re totally right. Like people don’t see it that way. They think you’re being pessimistic. I’m like, No, I’m just looking at what’s around me and calling it calling it what it is?
Sarah Noll Wilson
Yeah, yeah. It comes back to that discomfort with struggle, that suffering. And also uncertainty. This has been a concept that I’ve been exploring a lot for myself of just the when am I comfortable with certainty? And when am I not? And I think that there’s some element of that navigating the uncertainty that you’re living. Right? Which so that was something I was curious about, both for yourself, but also in how people show up and support you in this because when something is chronic and not acute, there is this uncertainty of what is it going to look like today? And how is it going to manifest? And, and even I’m sure, on some level in your journey. What is this?
Neha Sampat
Yeah.
Sarah Noll Wilson
Right? Like I don’t, you know, I’m thinking about that through my own lens. And so what what is that journey of navigating uncertainty look like for you? And then what is it also look like for others who are supporting you?
Neha Sampat
That’s such a good question. And I agree with you, I think, reckoning with uncertainty can be very, very, very difficult. And again, I’m gonna blame the system. And when I blame the system, I’m not saying let’s just throw our arms up and be like, it’s the system, and everyone who’s listening can be like, Oh, it’s not our fault, it’s a system. We are all part of the system. So it’s on all of us to shake up the system. But um, yeah, I think our culture is not built for certainty. Certainly, the American Dream is, you work hard, and you will get X, Y, and Z. And we know that is a myth. We know that is not true for all of us. And it is actually only true for some of us. And for many of us, we don’t even have to work hard, and we’ll still get X, Y, and Z. So it’s that myth of the American Dream that this country keeps trying to shove down our throats and we keep trying to shove down our own throats and everybody else’s throats, that if x then y.
Sarah Noll Wilson
It’s a formula! Just take Tylenol, you’re better.
Neha Sampat
Exactly.
Sarah Noll Wilson
Don’t worry. You’ll never have anxiety in your life. (laughter)
Exactly. Exactly. And that’s not life. I mean, for worse, that it makes my life really, really difficult to live in a in a culture where there’s a premium placed on dependability, reliability, certainty. And, and it also I think, is a wonderful thing, in that there’s some freedom in it, if you really can embrace the idea that there is no certainty. It also means that there is an element of surprise in life and sometimes those surprises are not unwelcome. Sometimes they’re welcome surprises. So there is – I’m not, I don’t like to silver line anything. I do not believe in silver linings. I would not wish your struggle or my struggle on anybody. But I guess, I guess what I would say is something I’ve learned in my journey is that we can reckon with it or not, but but, you know, life is, by definition, uncertain. We don’t know what’s going to happen to us tomorrow. And I think we spin our wheels and I for certain I’m a type A person, you know, I’m a very like driven person, if X then Y, trying to control what we can. And that’s been for me, probably one of the other big challenges that I continue to have to work on, which is where do I find my agency in a situation where I have very little agency. Like first how do I even acknowledge that I have very little agency, very little. And how do I leverage the agency I do have and my pain psychologist just pointed this out to me when I was actually you know, talking about that conversation that I shared with you that I had with my dear friend. And she was saying that that kind of bracing myself that is the that is where I have some agency. To be able to kind of brace myself and prepare myself is one of those tiny little spots where there’s some agency in this moment and so I don’t know the answer to it. I wish I did because I feel like I’d have a lot more emotional and mental peace if I did have the answer, but I will just say that reckoning with uncertainty, which you are faced with in a massive way when you have the illness I have is a beast, it is really, really, really, really hard.
Yeah, that that’s been that’s been a – it feels like new to me concept that is such at the core of a lot of mental health challenges, right? Like particularly anxiety. I need to go back to – you said something that just sort of cut through my heart as a neurodivergent person. The premium placed on dependability and reliability, that damn near broke me, Neha. Like because it’s, I don’t know that, I don’t know that I’ve ever heard that (pauses) just stated so – I don’t know. Just so clearly and I get and I get why it exists and I get why there is such a high premium on it and and when that is so prioritize then people who have different lived experiences or who bring different lived experiences to the table often will be excluded because they don’t fit into that, that bucket so to speak. I just, I had to just name that one out.
Neha Sampat
How do you, I’m curious if you’re comfortable sharing?
Sarah Noll Wilson
Yeah.
Neha Sampat
How do you reckon with that? You know, because that’s that’s a tough – that one, that one is not just about work, you know, that that’s about like how you show up for people. And I think it can create a lot of insecurity and impostor syndrome, getting back to what we were talking about originally, is like, am I a good friend? Am I a good parent? Am I a good this or that? Because we are, I don’t, I think it’s how we define reliability and dependability in our culture. That’s part of the problem. But I’m curious, because I’m still trying to figure this out, too. Like, how do you manage? How do you deal with that?
Sarah Noll Wilson
It’s, gosh, it’s, it’s so interesting, because, you know, we do so much work around trust. And a lot of times people will say, well, if somebody’s reliable, I trust them. And then I’ll make some kind of a joke, but not a joke. And I was like, yeah, I know, a lot of dependable assholes.
Neha Sampat
(laughs)
Sarah Noll Wilson
Like, I know, you know, like, I know, people who will get the work done, and I don’t want to work with them.
Neha Sampat
Right.
Sarah Noll Wilson
So let’s like dig deeper into this.
Neha Sampat
Yeah.
Sarah Noll Wilson
It’s interesting, because that point of, like, I’ll speak from my experience with ADHD. I do. I struggle with time blindness, that is a very real thing. I’m over optimistic. I think I can do anything and get everywhere in 15 minutes, and nothing will like – (laughs)
Neha Sampat
I share that part with you.
Sarah Noll Wilson
Yeah. (laughs)
Neha Sampat
I don’t know where it comes from for me if it’s cultural or what, but I like, yes.
Sarah Noll Wilson
Yeah. Just like I always joke I’m like, I’m just really optimistic that’ll get there. And you know, and and then there’s the reality of things will be forgotten.
Neha Sampat
Yeah. Yeah.
Sarah Noll Wilson
No matter how many lists, no matter how much compensating, there will be things that – I have more greeting cards that I have bought lovingly to send to people that are sitting in a pile. And so that actually has caused a lot of shame for me.
Neha Sampat
Yes, yes.
Sarah Noll Wilson
Like, a lot of shame. And because there is and again, I, I, until you said it, it had never been articulated so powerfully. Just that premium. So for me, for me, it goes back to that, you know, what is the moment, what is the relationship need? You know, I think that there are times when, you know, so like, (laughs) so I come from a family, I can say this, and I know, like my siblings are all, they all help behind the scenes, and they’re gonna be like, yep. There’s what we call the Noll time, and the Noll time, like growing up was, if the event starts at noon, we’re all probably gonna roll in around two.
Neha Sampat
Yeah.
Sarah Noll Wilson
And which is, which is, is fine. And also not fine sometimes when people are waiting, right? Like, it’s like, what’s the impact of that reliability? Right? What’s the impact of my timing to you? So I think that there’s times when that’s necessary to be more on top of or doing what you can to honor the other person, right? But I also, I don’t know, I think I think for me, I tried to give an incredible amount of grace and go what’s in your heart?
Neha Sampat
Yeah.
Sarah Noll Wilson
Like, what, what do I know about you as a person and what’s in your heart and what and not even necessarily like, what are your good intentions? Like, that’s not what I mean, but you know, like, I’m, I’m not, I mean, I can say this. Phew. Like, I’m not the most dependable person when it comes to like tasks.
Neha Sampat
Yeah.
Sarah Noll Wilson
I will absolutely be the most dependable person when you need to be supported and loved.
Neha Sampat
Yeah.
Sarah Noll Wilson
Right?
Neha Sampat
Yeah. I was gong to say that.
Sarah Noll Wilson
So it’s like, so, so I love that question that you posed of, “So what’s the definition?”
Neha Sampat
Yeah.
Sarah Noll Wilson
And to me, it’s situational. Right? Like what’s the, when do I need somebody to be you know, my, what I need from my doctor is different than what I need from my spouse or my partner or is different than – and so it is something that that I wrestle with a little bit, especially when we’re working with people who are in positional power and authority and, you know, also just like, like navigating cultural differences.
Neha Sampat
Yep.
Sarah Noll Wilson
You know, like, some some cultures we work with, and when they say we’ll get it tomorrow, it could be three weeks. (laughs)
Neha Sampat
Yeah, exactly.
Sarah Noll Wilson
You know, and that’s not wrong. (laughs)
Neha Sampat
You know what we call? You know what we call Noll standard time? In my culture?
Sarah Noll Wilson
Yeah, what?
Neha Sampat
We call it Indian Standard Time.
Sarah Noll Wilson
(laughs) Okay, got it.
Neha Sampat
So there you go. Like Indian people are notoriously, we’re just, you know, different about time, our relationship with time is different. That’s so funny.
Sarah Noll Wilson
Yeah. And I think when we add that into this conversation of, from like the standpoint of like, the expectations we put on place, the, what the, what we clarify as, like, in the workplace as good performance. As you know, it’s, a lot of people get shut out. Or they’re not given the space they need. I think that, you know, one of the things that I, you’ve mentioned, and you’ve talked about, you talked about it with your, your experience with your doctors of being dismissed or minimized. And, you know, and I, and I see that in the workplace, too. And, and it’s, like, one of the things that’s coming up for me, is, you know, people will say, but what’s the, like, how much do you tolerate? Like, how much do you accept, right, that somebody needs to be out and resting for every 10 minutes, every five minutes that they’re working? What’s that balance? And, and like, I hear that, and I really struggle with that from a humanity perspective of, but if, if when they can give me their full selves, then I get that, god that is feels like an even bigger gift.
Neha Sampat
Well, I think it makes the case for diversity too, you know, because we’re not talking about just, you know, racial diversity, we’re talking about ability diversity as well. You know, because it would be hard for me to lead a team of a bunch of people who have the same exact gifts and limitations that I have. One, we would just not be great at performing if we have the same challenges and same strengths. This is part of why you know, what I, the sort of dependability and reliability I need because I’m unable to be as dependable and reliable in the traditional sense, is a little different. But what do I bring? I really appreciate that you made this point about how you’re dependable, you’re reliable when it comes to being there for people, right, like, and I think that’s where I, that’s how I’m searching. Like, I’m searching, to find within myself, and be very cognizant of this. When I look at other people, when I think about other people, you know, what do people bring, instead of, and I think it’s easy when you have a chronic disease, that, you know, certainly comes with its share of mental health issues as well, which just exacerbates this issue, to be hyper focused on what you can’t do. And that’s because that’s what, you know the reliability and dependability conversation we’re having is exactly that, you know.
Like, I constantly feel like, oh, gosh, I’m not as reliable and dependable as I know I would be if I could, you know, as I know, is expected of me. I’m not as a friend as reliable and dependable. I’m not as reliable, dependable, you know, for my kids, unless I really, really reclaim the terms and define them in my own way the way you just did. But that hyper focus on what I’m not, it’s just so, it just, it happens so easily, because that’s how we’re seen. Like when we talk about the premium placed, it’s that our culture prioritizes and overvalues these certain aspects of us and undervalues the heart that people like you and I bring, right? Like when we show up, we show up in a way that – it’s like why people enjoy that last episode of us together. It’s why I feel like you and I immediately (snaps) go beneath the skin, you know, because there’s, there’s a courage, there’s a connection that’s felt deeper. And I think that’s something we bring that maybe other people don’t bring, it doesn’t mean that there’s anything wrong with anybody. It’s just we all have our different skill sets. So I’ve been trying to make the point to myself, because I need this point made to me and I don’t have people, enough people making this point. So that’s where I think, you know, community comes in. When we talk about how people can support those of us who struggle with chronic illness, chronic disease, chronic pain, you know, don’t just look at what we aren’t, you know, don’t let us just look at what we aren’t. Look at what we are and some of what I am is, much of what I am is, I will not say it’s because of my chronic disease. I will say that my chronic disease has shone a spotlight on certain aspects of who I am, that I would not have necessarily been able to see as clearly, you know, like my tenacity. Like I’m still appreciating about myself, but I think there’s such a lack of appreciation of who we are when we can’t show up in the traditional, reliable and dependable ways. We’re just like, you know, crossed out, instead of like, what is the magic that these people bring that other people don’t bring?
Sarah Noll Wilson
Yeah, it you know, the thing that was coming up for me, as you’re talking is, how fine of a line that could feel between that and toxic positive. Right? And what I mean by that is, right, like how you might approach it. of, of, if you have someone in your life, who maybe you’re listening to this and going, oh, I want to help them see what they bring. And what would it look like to say, you know, instead of a look at the bright side.
Neha Sampat
Yeah.
Sarah Noll Wilson
You’re tenacious, you’re –
Neha Sampat
Yeah, totally.
Sarah Noll Wilson
Like, no, –
Neha Sampat
No, no, no.
Sarah Noll Wilson
But to say, but to say, I imagine this is really hard for you. And I, I can appreciate or imagine that you might get stuck looking at all the things you’re not doing, can I share with you all the things you are doing? And how powerful that would feel, to receive that? And how powerful that would feel to say, you know, you are incredibly tenacious, you are, you have a resilience, even when you don’t feel like you do. You do, right. And so what would, what does it look like to pour into each other not, not to remove the discomfort with the uncertainty, the suffering and the struggle, but to pour in so that we can – I don’t, you know, still be connected to our whole selves? What that looks like, at that time, right? Or in that, in that that mode?
Neha Sampat
Yeah, I think like, you know, what I’m hearing and I agree with is this like, invalidation that happens, because people see it as an instead situation like a but or it can, it’s one or the other. And you said a word, just as a matter, of course, that was quietly said that I want to amplify, which is and, and I think if people can believe both, you know, believe that I suffer a lot. I suffer on a daily basis, more than many of them could imagine. You know, I’m in pain right now. Like it. And I still, I still grasp and hold on to life, you know, and I’m resilient. And I’m tenacious, but this idea that both are true. And I think where people feel like they’re trying to dismiss, minimize or invalidate without realizing that’s what they’re doing. But they are trying to because it’s uncomfortable for them. They’re trying to like, let’s quiet that down. It’s like, you cannot quiet that down. That is there, acknowledge it, and acknowledge this as well. So I think there’s the and piece of it. And then the other thing when you were talking about resilience, and I didn’t come up with this, I, I saw someone say it, I don’t even know where. And I’m like, That’s it. And I’ve started to adopt that is that you are so resilient and I wish you didn’t have to be.
Sarah Noll Wilson
Ah.
Neha Sampat
Right? You are so tenacious. I wish you didn’t have to be. You’re so strong. And wish you didn’t have to be. Because the truth is like this, this is not a gift this this situation gives us, you know, we’re not – at least that’s how I feel, everyone deals with things differently. For me, it does not help me to be like, well, at least I have the gift of tenacity, right? Like, this is the gift of the situation. It’s like this is a bunch of bullshit.
Sarah Noll Wilson
Yeah. (laughs)
Neha Sampat
I am resilient. I wish I didn’t have to be, it’s not fair. Life is not fair. And I’m not going to just accept this in a way that I’m not going to keep fighting, you know?
Sarah Noll Wilson
Yeah, yeah. It’s a, boy that, yeah, you’re resilient and I wish you didn’t have to be.
Neha Sampat
Yeah.
Sarah Noll Wilson
Is really powerful. And, and the and, you know, I know, I’ve had moments of crying to Nick and be like, I know I’m gonna learn a lot from this. Like, I know tha,t I know, I’m gonna come on the other side. I know that but I was like, but I’m fucking tired of learning and I’m tired. Like, it’s like, I’m tired. I’m just tired. And I know, I know, things will like, you know, in my situation, right? Like with my mental health and my, you know, new diagnosis with OCD. I’m like, I get it. I know. I know that I’m learning, I know it’s going to open up my capacity for other people. I get all of that.
Neha Sampat
Yeah.
Sarah Noll Wilson
And it sucks right now. (laughs)
Neha Sampat
Totally.
Sarah Noll Wilson
You know, and and I know there will come a point where I will be able to even more confidently and compassionately, and maybe courageously hold both of those things. So this is the grief and here’s what I’ve gained. And those, those go hand in hand. And, and just holding space for all of that, which again, goes so beautifully back to how – I just feel like that’s the question as being a human. How do we navigate hope, expectations and despair? I think that –
Neha Sampat
Yeah, and I think the first thing is like understanding that there is despair. And that’s where most people get stuck until they’ve been in a situation of despair. That is not acute, you know? That is more chronic. I definitely think that for me, that’s, that’s, that’s where it’s at, too. It’s, you know, how do we, how do we navigate it in a world that does not leave room for despair? That actually does not want to see despair? Yeah. It’s isolating, you know, it’s so isolated, need to be in despair and to, to not be seen, and if people can’t see your despair, they’re not going to sufficiently help you either.
Sarah Noll Wilson
Yeah, yeah. Have you found that your world has gotten a little smaller? That – you don’t have to answer that? But –
Neha Sampat
Yeah, and it’s definitely gotten smaller, but it’s also gotten bigger, in some ways.
Sarah Noll Wilson
Yeah.
Neha Sampat
You know, like, I’ve plugged into the chronic migraine community, for better and worse, like, there are times that it really bums me out. I mean, Thanksgiving week, I think we lost three people who died by suicide. And, you know, it’s such a reminder of the suffering that this illness brings, and the amount of pain people are in. And so being in the community, like, it really was, I was a wreck, you know, for a few weeks, just, I don’t even know these people, but I know them, you know, like, I know, their dream. And so, and I get it, I get why I get why. And so, you know, there’s that kind of piece of it that sometimes can make my life day to day a little harder. But to be seen and understood in a way that I’m not in my other communities is important. I think what’s really where I’m still struggling, is the multiple marginalization, right? Because I can find so so I found I’ve lost a lot of people who weren’t, as I started to become more public about my my illness, the impact of it and my needs. People were like, peace out can’t meet your needs. And I’m like, yeah, no, there’s not room for that, because if you can’t accept me with my needs. You’re not really accepting me, and I don’t belong. So I’ve had a lot of heartbreak this past year. But I’ve also very cautiously, you know, have welcomed new people into my life that I don’t know if they’ll get it. Certainly the migraine community, there are people who get it, I’m just not like super close with people. But I have other people who are not part of the migrant community who who so far seem to be, you know, a lot more willing to acknowledge that part that you were talking about that people often just try to be like, Oh, just, you know, just focus on the positive. So that, that there’s some hope there. For me, it’s been interesting, the intersectionality continues to be a real struggle, because, you know, I will have conversations with other, you know, Asian American women. But, you know, I’m an Asian American woman with a disability. And that that makes my experience different. And so there’s a disconnect there. Like, there’s not like, I haven’t found my community of Asian American women with disabilities, you know, so I think it’s, the more marginalized you are, it can be hard to really find a place that you are understood, and you can share lived experiences.
Sarah Noll Wilson
Yeah. I mean, it just feels like another stone stacked.
Neha Sampat
Yeah. Yeah.
Sarah Noll Wilson
A little bit, is like the image that was coming up for me.
Neha Sampat
Yep.
Sarah Noll Wilson
How, how do you want to be supported? Or maybe how has somebody supported you in a way that was really powerful? Because I think that, you know, again, sometimes people think they’re doing the right thing. You know, I’m, like, I’ve gotten to a point in my life where, you know, it’s usually my mom, I love her, but usually like, “Sam, don’t worry about it.” Like, I, mom, I love you. And I know you’re trying to be helpful, but I’m telling you that in this moment, that’s actually not helpful.
Neha Sampat
Right, right.
Sarah Noll Wilson
Like, here’s what I need, right? And I just gotten like, and it’s not, I’m not like accusing her or judging her because I know it comes from this beautiful place, and I don’t want you to suffer struggle anymore. Right? So I’m going to do this. So what, what has that, either what has that support look like in a way that was like, oh, this is what I needed, or what might it look like?
Neha Sampat
I could go on about this for forever. I have written about this. So I will send you the piece that just recently was published. It was about when I went to a conference and I hadn’t been to a conference in years, you know, over the course the pandemic and my migraine being so flared up. And I went to a conference. And it was the first time, you know, since I started being more and more, I’ve never hidden my, my disability and my disease. But I’ve been very intentionally, very public about it over the past year for myself and as an advocate, and for advocacy purposes. So I wrote this piece about kind of what went right as far as receiving community support, and I’m happy to share that with listeners. So I’m going to also talk about what hasn’t gone right, because I think that that can help people understand what could go right. I think one big thing that I worry about a lot, and I’ve experienced is that we are not taught in our culture, how to understand and support in a chronic way, we are taught how to deal with things acutely. And I have a disease, you know, as it sounds like you are struggling with similar things that are not acute, they may ebb and flow in different ways. They can be better managed at some times, but they’re don’t magically just oh yep, had a week of that, over now.
Sarah Noll Wilson
(laughs)
Neha Sampat
And it’s so strange, because literally, like, you know, through the pandemic, people are like, freak – COVID has been terrible. COVID has been terrible.
Sarah Noll Wilson
Yeah.
Neha Sampat
But it’s been interesting, you would think it would give people a window, I feel like you’re one of the only people who connected the dots, you know. When you struggled and you were like I am, you put those, you had those COVID glasses on, and you were like, now I can envision a little bit of what it’s like for people with chronic diseases. And that is not what most people did. You know, like, I think people were sick. Some people were very sick. And it was like, it’s done now, you know, those who were lucky enough to not have long COVID. And I think that’s how we are, we are raised to be that way. And it means that, like we talked about earlier in this conversation, people are waiting for me that just get better. And it feels like the support doesn’t, doesn’t sustain. Because they’re just, that’s just people don’t know how to sustain. And yet my suffering sustains, you know, and so how many times am I gonna, like, let people know, I’m still suffering, like, it’s, it’s taxing for me to keep saying the same thing over and over. And then, so so one, I think people need to really try to wrap their brains around chronic illness and think about when they do have an acute illness, actually think to themselves, what would it be like if I felt like this every single day, and there was no cure? And literally, I, I have a lifetime ahead of this ahead of me of this, like really think that and I have a friend who has texted me at time she’s like, you know, I just had a really bad headache or had a really bad migraine on Sunday. And I just was thinking about you, I was thinking about my god, like, how do I make you know, it was so terrible to be in that moment that day. And what must it be like for you? Right? So like, we can’t imagine it’s true, no one will understand, I can’t understand exactly what your life is like in your struggle. You can’t understand mine, but we can try our best, you know, we can, we can be there for one another without conflating our challenges. So I think if people can “bear” to try to imagine and even if they can’t bear push themselves to bear to try to imagine because I don’t have a choice. You don’t have a choice. You know, we were stuck with this. We don’t even have to imagine. And then I think also I have done a lot of writing this past year about my experience with chronic migraine. I’ve started using a #chronicmigrainechronicles, on Twitter X, whatever the hell it is, on Facebook, on even on LinkedIn, which LinkedIn.
Sarah Noll Wilson
Yeah, that’s where I’ve see your stuff.
Neha Sampat
That was a big, that was a big – that one was hard for me to like, be like, I’m gonna own this among my prospective clients, because I knew there was going to be people who were like, oh, we don’t want to hire her. She’s not going to be dependable, you know, even though I show up every dang time for every single thing I commit to. But I think that – I lost my train of thought, what was I saying?
Sarah Noll Wilson
Well, we were talking about like ways people have supported you.
Neha Sampat
Oh, yeah.
Sarah Noll Wilson
In good ways and ways that they haven’t.
Neha Sampat
So when someone shares their experience, engage with it. So here’s my fear. My fear is this podcast episode goes out with a title about chronic illness. And a bunch of people are like, oh, I’m not gonna listen to that one. That one’s not. Right? And so it’s the same thing. Not the same thing. But similar with other aspects of diversity. You know, we see the same similar things happen as we were talking, I was thinking about how similar this is to like, the racial diversity issues that I’ve struggled with, you know, like this idea of, oh, just be thankful for what you have. That toxic positivity, that’s applied in racial, along racial aspects as well. Like, oh, you had to struggle? That’s what made you so brave.
Sarah Noll Wilson
Yeah, yeah.
Neha Sampat
It’s like, I don’t – Great, I’m brave. But I wish I didn’t have to be and I shouldn’t have to be, right? And so similar sort of thing here, you know. This isn’t a conversation for you and for me, although, of course it is because I love talking to you. My hope is, this part of the conversation particularly, is for people who don’t struggle with the issues we struggle with. And my worry is those people are not going to be listening to this. And it’s you and me preaching to the choir, so to speak, because that’s what I see happen a lot with what I put out on social media, you know, it’s like, crickets. And it’s so scary as a person with a disability that brings me to tears most days, to put something personal out there, and literally have nobody respond to it. I’m like, wow, I am really alone. You know, and it’s not that people are like, eff her. You know, it’s that I think, one there’s the algorithm, which is problematic and two, people don’t see it is their issue, or three, people are tired of hearing me complain about it, quote, unquote, right? They’re really tired of me. But I’m like, I’m tired of having chronic migraine, you know, but it’s not going away. So if I’m stuck with it, you’re stuck with hearing about it.
Sarah Noll Wilson
Yeah, yeah.
Neha Sampat
But it’s tough, because I see it happened with other people I follow on social media too. Like, we don’t see these issues as ours. It’s the same thing with you know. I mean, George Floyd, I mean think about George, like going, I literally just had a conversation about that moment in history. And it’s like, if you don’t see George Floyd as yours, if you don’t see George Floyd as your family, you’re not going to activate. And we do this. We don’t, we don’t, we don’t actually activate until it’s our problem. And that’s what happens in all these areas of diversity. We don’t, we don’t really that’s not for me. It’s like, no, it’s actually exactly for you.
Sarah Noll Wilson
Yeah. That’s, uh, yeah. But I’m gonna definitely, like, hold on to that. Because, you know, it’s, it’s true, and it takes a an intentionality to say, I’m going to learn about this, and sometimes it’s not until it’s, right? Kind of like, what’s near to you becomes dear to you, and how do you make more stuff become near to you?
Neha Sampat
But even friends, you know, like, even friends. Like for me, I need to know, when I share an article with friends, like, Hey, I wrote this piece, you know, about my disability, that they read it, I need them to circle back, either respond to the article, wherever I posted it, or circle back and be like, I read it, you know, I’m hearing you. That you know, like, but when I don’t hear back, I don’t know that they read it. And it’s really hard. Because for me, this is me, and everyone has their own journey. I’m trying to make meaning of my struggle. This is how I personally make meaning of it is like, alright, I’m going to get involved in advocacy, I’m going to share, I’m going to try to make this world more inclusive, I’m going to connect it, it’s connected to my work. It’s connected to my mission as human, but to, to not it and and I need to be seen by the people who care about me, to not get that, like, let me oh, I want to eagerly read it and respond. It’s that really, really, really, really hurts me.
Sarah Noll Wilson
Sure. Yeah. And I and I would imagine, like feels even more like invisible. Right?
Neha Sampat
Exactly.
Sarah Noll Wilson
Especially – and you’re like, you know, – I it’s it’s, I mean that, gosh, that point you made about we don’t know how to show up for chronic illness, chronic pain, chronic suffering. I mean, I remember, a dear friend of mine, he passed away very suddenly at 50. And his his widow, was like a month later said everybody wants me to be over it.
Neha Sampat
Yeah. Yep.
Sarah Noll Wilson
And, you know, and like, everybody, you know, it’s, it’s, it’s similar, like, what’s that –
Neha Sampat
Very similar.
Sarah Noll Wilson
You know, there’s something about, I don’t know, this, this is gonna make sense. There’s something about the human experience is sort of like a game of endurance. And what does it look like to endure together? Right, like, how do we share the burden together? I mean, I sit there and I think, because even when you just have one or two people who, even if they don’t get it, right, like, even if they don’t understand it explicitly, but are like, but I’m walking with you, I’m going to you know, I think about Nick, Nick endures a lot with me. Right? Like, and I like to think that, you know, when he needs me to hold the burden too I hold it with him, and it is, yeah, I don’t know.
Neha Sampat
I think you’re totally but first of all, you just did like a million frickin mic drop moments.
Sarah Noll Wilson
(laughs)
Neha Sampat
And what you just said, you’re gonna go back and listen to it and have like a zillion quotes to put on T-shirts. Because that was actually mindblowing.
Sarah Noll Wilson
It’s systemic, it’s systemic, it’s systemic. (laughter) You’re gonna get a mug with that. I’m gonna like, email you right away and be like, we gotta get a mug for Neha.
Neha Sampat
You have to have one too because it’s ours together, right?
I will. (laughs)
Talk about together, I mean, I think that’s been the big struggle. That’s been one of the struggles for me, too, is exactly what you said. It’s like, how do we how do we suffer together? Or how do we struggle together? And how do we go through something with someone? And that’s where I feel like our American culture is just the opposite of that. It’s super individualistic and not communal. And that for people who have chronic illness is a huge, huge problem. I literally, there’s a song I’m gonna have to like, give my props to Depeche Mode. There is a really great Depeche Mode song. There are many great Depeche Mode songs. But Judas. Yeah. Judas is a really great song that as I’ve been struggling with exactly the point, you were talking about, that the lyrics really speak to this about how, you know, let me put it this way. Abled people do things based on convenience. I don’t have the luxury of doing things based on convenience. I do things based on survival. And when I have needs, oftentimes, people will not show up for those needs based on their convenience. And it’s so hard for me to you know, what, what I really want, it appears is too much to ask, which is like, can you give something up? I have to give things up, every day of my life I’m giving things up. Would you mind giving up one thing today to be able to, like, help me out? And I think, I don’t, I, I think it’s just how our culture is, you know, this identity, this idea that it’s the privilege conversation that you and I have had before too right? Where it’s like they don’t understand, I think. They don’t understand that, like, I don’t get to make decisions based on convenience. Like, my need is so dire. And when I see that they can’t show up for my need because they, you know, are going to do whatever that’s like a luxury that I can’t even dream about doing. That’s hard, because then I feel like you’re not with me, you’re not willing to lose anything.
Sarah Noll Wilson
Yeah.
Neha Sampat
And I’m losing every day, every moment so much. And I’m carrying, I’m having to carry that, for the most part on my own and being slightly hyperbolic, because it’s not like they’re not willing to do anything.
Sarah Noll Wilson
Sure.
Neha Sampat
But there’s it there’s not this idea that I’ll walk the hard path with you. You know, my life will also be hard because I will walk the hard path with you.
Sarah Noll Wilson
Yeah, yeah. Okay, so there’s this, this movie, and it’s gonna seem like a really strange, like, what was it? Midsommar? It’s like a horror film. I don’t know if you’ve seen it.
Neha Sampat
I have not.
Sarah Noll Wilson
Anyway, it’s a strange movie for me to be referencing. But there’s a scene where the main character, the main female character, she she experiences an incredible amount of loss. I won’t explain why. But all of these women in this sort of like strange, right, like, culture, mourn with her and they are breathing with her and they’re crying with her.
Wow.
And I, and in the context of the movie, it’s like, they presented as creepy.
Neha Sampat
Yeah, yeah.
Sarah Noll Wilson
Right? Like, yeah, supposed to be unsettling. But when I was watching that scene, I went, what would that be like, –
Neha Sampat
Oh, my gosh.
Sarah Noll Wilson
That if if somebody was in a moment of despair, if somebody was in that moment of grief, like just pouring out, and we all just like, we just met them, and we were holding it with like, I just, I’m getting goosebumps. And again, like in the context of the film, it’s, I think, I think they intended to have a different reaction. But when I saw that, I was like, shit, that’s what I want in my life. That’s how I want to try to show up for folks like, how do I show up? You know, and I’m not always great at it, right?
Neha Sampat
Me neither.
Sarah Noll Wilson
Like, I’m part of the system.
Neha Sampat
Oh, yeah. Me too.
Sarah Noll Wilson
It’s in my DNA. Like, I mean, I get excited when my neighbors asks me to like water her plants. I’m like, yeah! Let’s be in community together! I have a cup of sugar whenever you need it, right. Like, I get excited about that because it doesn’t, it just doesn’t exist in our very like, right? As suburban has spread out, as families have separated, as third places have ceased to exist and right, and also just the sheer individual nature of our culture, it, it, it’s just so isolating. And you know, the other thing that I can’t help but reflect on as we’re talking, I feel so so incredibly fortunate to have colleagues who I feel like will share the burden with me, like and I think we do that really well with each other. So as people are listening to this, and I know we have a lot of folks who are in leadership or HR. It’s important for us to have that community, you know, outside of work, but also realize you can build that community inside of work, too. Which is critical, because that’s where you’re spending most of your time. So I’m just having a moment of appreciation.
Neha Sampat
I totally, I feel that too. I mean, that’s why that piece I wrote, you know, it was with colleagues, but, I mean, I need to write a piece about friends too, because as much as I feel like, things could be different, you know, and how we, as a culture show up for one another, and my gosh, that movie was like, I totally, what a beautiful way to express what exactly what I was trying to say. I mean, that’s it.
Sarah Noll Wilson
I mean, it’s super, now to be clear. I’m not. I’m not like recommending, it’s a really fucked up movie. (laughter) It’s really messed up. It’s like, super psychologically uncomfortable. It’s a lot of things. But just that one little scene.
Neha Sampat
Yes, yes, yes.
Sarah Noll Wilson
Because I don’t want people to be like, oh, I’m gonna watch this movie. And it’s gonna – no, it’s horrifying. It’s terror. It’s, it’s horrifying.
Neha Sampat
But they got one, right.
Sarah Noll Wilson
That scene was so interesting. So anyway, I feel like I need a caveat there. People have seen the movie or like, why is she bringing it up when we are talking about this?
Neha Sampat
That is so funny. Well, I appreciate at least that one little part, even though they probably didn’t intend it that way. Yeah, I think that, you know, I think you’re totally right. I think that we need this in our in our workspaces, connections that are mutually supportive. Understanding that this type of support I need may be different than the type of support you need. And this moment, a moment from now. But I feel like I’ve, you know, really discovered in a lot of ways through this journey, you know, who is there for me, you know, as much as I’ve lost people, I’ve also like, come to appreciate people who have shown up in incredibly compelling ways. I mean, it’s, I literally had, I have a friend who literally has checked on me every single day, for probably at least the past six months, probably beyond, on that every single day, you know, and asking the question, like you asked, just the way you put it, how, how would you like to be supported? How did one friend put it to me? Or what would nurture you in this moment?
Sarah Noll Wilson
Oh I love that.
Neha Sampat
And I really, really love that. And I think it’s for me, sometimes it’s the little things, it’s understanding that my limitations are not just like, big things. But it’s the little things like one of my friends came over and took me out to dinner, because I never go out, you know, anymore. And that in itself was lovely to just spend time with someone.
Sarah Noll Wilson
Yeah.
Neha Sampat
And then when we got back, my bag was on the floor of her car, and I was getting out of the car. And I went to reach for my bag, and she’s like, let me get it, let me get it. Like just such a simple gesture of like, reaching down to get my bag. You know, I think it’s, it’s reminding me that I’m not holding you to our plans. Like, I know you want to be there. It’s things like, I had a group of friends who were going to dinner together that I’m a group of, and I was like, I don’t know, if I’m, we’ll make it because of my migraine. And later, I realized, oh, and I told them, I’m like, what you could do in the future is if I can’t make it, bring me back something.
Sarah Noll Wilson
Yeah, yeah.
Neha Sampat
You know, like, don’t just make it that I miss out on everything, I’m gonna feel sad and be crying at home, that I can’t be with you all that I’m left out, but at least come by and bring me the food, you know. Think of activities that I can do, and bring bring those activities to me, you know, because I need connection too. I need to feel like I belong as well. So it’s all sorts of things from checking in, oh, my gosh, doctor’s appointments, like, you know, if you have a friend who could use help, like getting to and from doctor’s appointments, that’s huge. The checking in after a doctor’s appointment, how did it go? Because interacting with the medical system, as we talked about earlier, it’s incredibly, it’s honestly traumatic for me, and for many people. It’s traumatic. And so I often find myself having a lot of emotional needs going into those appointments and coming out. But I think even just asking the question, and sometimes just act without asking. Sometimes just show up and give your friend a hug, you know, just show up and don’t ask, what can I do? What can I do? Just show up and be with like you said, walk the path with them.
Sarah Noll Wilson
Yeah, yeah. I love that. I. And I think that like, you know, the only thing I would add to that is just like an offer it right. Like, hey, would it be helpful if, you know. I know, one time we were going through, we had lost a couple family, this was during the pandemic, and we had lost a couple of family members. And I remember, Teresa texted me and said, carbs can be healing. So do you have any issues with me dropping off some cinnamon rolls. And I’m like no, and it was just such a glorious, right? Like instead of asking instead of, and just those little things, and I think part of it is trust. Trust, the thing that’s coming up for me is and trust that you will tell the person if it’s not right.
Neha Sampat
That’s right.
Sarah Noll Wilson
Like, like, you know, maybe maybe I think I’m being helpful by reaching for the bag, you’re like, No, actually you need to, you know, learn to do it or whatever, just like trust that they will, they’ll, they’ll guide you in what is going to be most supportive. And, and then you know.
Neha Sampat
That is so true. Don’t be scared to help because you’re scared you’re gonna like, give them the wrong thing. You know, I think that’s huge. I mean, it’s it really goes to difficult conversations and like, I think of it with migraine, like people don’t know what triggers my migraines. So I think it holds some people back from sending things. it’s like, okay, you can ask me, you could be like, thinking about sending this, but would that make your migraine worse? Or might it help soothe you?
Sarah Noll Wilson
Yeah, yeah. I, I love you.
Neha Sampat
I love you, too. You’re so frickin’ cool.
Sarah Noll Wilson
I wish. I mean, I wish I you know, it’s the I’ve had this thought before. Like, I just want to sit on the couch. And you can just like, keep your eyes covered. And I can just hang and just sit in silence together. Because sometimes I think we don’t do that enough, either of just like just coexisting. Like, we don’t even, don’t even need to go out to dinner or do something. Like I love. I love the moments with people. And usually it’s family, right? But I would love to have more friends where we just exist together. Like, you just come over and we watch TV. So anyway, I wish I wish. Now, I mean, this is just, you know, hi, everyone. This is Neha and Sarah time.
Neha Sampat
Yeah.
Sarah Noll Wilson
I just want to exist with you Neha. I’m so grateful for you.
Neha Sampat
I feel the same way. And I think there’s something really beautiful about that. I just want to exist with you. Something very meaningful to my heart. And I also kind of more practically speaking want to say that, I’ve had to learn how to do that with some friends, you know, like, and but it’s been so freeing to do that. Like, I just traveled with one of my dearest friends, the one who calls me you know, checks on me every single day. We traveled for a weekend together. And usually we fill our time, we have so much talked about, we’ve been friends for a lifetime. But like we’ve had to learn how to have the silences because I have chronic migraine. She has like episodic migraine, and we’re like, it’s okay, like, it’s okay, we can be together and enjoy our togetherness, without filling that space with words, you know. But it was something that I think took some practice, because that’s not how we ever were. But what a beautiful notion. What a beautiful, vulnerable notion.
Sarah Noll Wilson
Yeah, that’s, uh huh. Well, we can clearly continue talking, and we’ll just have you on again. And you know, we’ll have for some other some other topic, but I’m so grateful for you. And I’m so grateful that you were willing to come on and talk about your experience. And you know, and hopefully we can get more folks to listen to this. Right. Like, I mean, I hear what you’re saying earlier of like, we don’t want to just preach the choir. We want to preach to the people who are supporting the choir.
Neha Sampat
Exactly, exactly. This is all of our issue, right? We don’t carry our illnesses as individuals, we carry them as communities. Thank you so much, Sarah, you’re, you’re truly a gift and you bring out, you helped me know myself better. And you really just pull wisdom out of both of us I feel like, so thank you so much. You’re wonderful.
Sarah Noll Wilson
Thank you.
Neha Sampat
I adore you.
Sarah Noll Wilson
Likewise.
Our guests this week has been Neha Sampat, and they’re – I just always leave so fulfilled by these conversations. But some of the things that I’m definitely holding on to is that idea of how much of a premium we put on dependability and reliability, and how that can exclude folks, depending on what they can offer, and how do we how do we help people bring their whole selves, whatever that looks like. So for those of you who want to know how to connect with Neha, we will be sure to put her contact information in the show notes along with the articles that she referenced. Please be sure to follow her on LinkedIn, or on your preferred social media platform. So you can see all the great work that she’s putting out And we want to hear from you. You can reach out to us at podcast @ Sarah Noll Wilson.com. And let us know what resonated for you, what, maybe you have a story that you’re navigating or you love someone who’s navigating a chronic illness, please do not hesitate to reach out. Also, my DMs are always open on my social media platforms. And if you’d like to support the show, please be sure to rate, review and subscribe to the show on your preferred podcast platform. That helps us get exposure and bring on great guests and explore topics like the one we did today with Neha. Also you can become a patron you can go to patreon.com/conversations on conversations where you’ll get access to ad free shows, early episodes as well as some pretty great swag and your financial contribution will support the incredible team that makes this happen.
So speaking of them, let’s give some love to our incredible team that makes this show possible. To our producer Nick Wilson, to our sound editor Drew Noll, our transcriptionist Becky Reinert, our marketing consultant Jessica Burdg and the rest of the SNoWCo. crew. And just a final big, wholehearted big hug from Iowa. Thank you to Neha Sampat for showing up with courage and helping us learn how to do the same. This has been Conversations on Conversations. Thank you all so much for listening. And remember, when we can change the conversations we have with ourselves and others, we can change the world. So until next week, please be sure to rest, rehydrate and we’ll see you again soon.
Sarah Noll Wilson is on a mission to help leaders build and rebuild teams. She aims to empower leaders to understand and honor the beautiful complexity of the humans they serve. Through her work as an Executive Coach, an in-demand Keynote Speaker, Researcher, Contributor to Harvard Business Review, and Bestselling Author of “Don’t Feed the Elephants”, Sarah helps leaders close the gap between what they intend to do and the actual impact they make. She hosts the podcast “Conversations on Conversations”, is certified in Co-Active Coaching and Conversational Intelligence, and is a frequent guest lecturer at universities. In addition to her work with organizations, Sarah is a passionate advocate for mental health.