"Finding beauty through hardship"
Sehreen Noor Ali on the power of witnessing and creating an "online home" for medical needs moms
Sehreen Noor Ali is the founder of Sleuth, a search engine for children's health, which she founded after quitting her job in education technology in 2018 to address her daughter’s medical needs. She founded Sleuth because she saw firsthand how many parents struggled to find reliable guidance online, and found that crowdsourcing data from parents actually leads to incredibly accurate insights. Sehreen’s goal with Sleuth is “to give parents a more reliable, useful alternative to Dr. Google and WebMD.” As someone who regularly texts various mom-friend threads to “consult my medical team,” I completely understand how such a service could be invaluable. While, of course, I ultimately seek the expertise of pediatricians and mental health counselors for my kids, more often than not, I’ll parse through my kid’s symptoms with my friends to figure out what might be going on before I decide which particular health professional to reach out to. Many, many times, these conversations with my “medical team” have alleviated anxieties (“Oh, that’s totally typical for this age - here’s what my kid’s OT had to say about that”) or led me to seek intervention earlier than I might otherwise have (“Yeah, I’d make a call. When we were going through X, this type of intervention was super helpful.”)
Sehreen and I first touched based on Instagram, when I put out a call for newsletter coverage suggestions, and with her first message, I knew I wanted to interview her. Here’s what she had to say.
The world of mom influencing has made it really hard for moms of atypical kids (neurodivergent, special needs, medical needs moms) to be seen. Which kinda takes my breath away because there are so many parents of kids who are managing things, especially ADHD, anxiety, etc. Anyhow, if you ever cover this 'other' world of mom influencers, I think it'd be interesting and helpful because so many of us parents (my daughter has medical stuff going on) really feel alienated, and frankly, left out of the dominant narratives. It's not the normal left out, it's like a 'f*you, you have no idea how much harder you're making it for the rest of us to be seen.'
In cultural critiques of momfluencer culture, we often talk about “feeling seen.” “Feeling seen” can make a mom feel less alone, feel validated in her experiences, and of course, “feeling seen” can urge a mom to buy stuff. But Sehreen’s mention of “feeling seen” in the context of health is something rarely included in mainstream analyses of momfluencer culture. And something that should be. So I’m so happy to share our talk. I learned so much from Sehreen, and I know you will too.
Sara: Can you speak about how your experience as a medical needs mother has informed your view of mainstream momfluencer culture?
Sehreen: One of my daughters has ongoing medical needs, and while I don't share her diagnosis publicly, every time I do share, the response is often: Oh, I didn't know it was that bad. And I think that’s interesting. One of the things I’m working on is being more open about my inner world. I come from a strong faith tradition, and have experienced traumas that have sort of blunt forced me into believing in something bigger than myself, and that faith has really helped me survive. I think this also explains why I’m so bristly about momfluencer culture. It’s so materialistic, like, where are the access points for others with different experiences? And I think why people are surprised if I do share the diagnosis privately is that I must be underplaying it online in part because I don’t know what the entry point is compared to other motherhood narratives.
Sara: Momfluencer culture is so much more about external presentation, right? Versus being rooted in curiosity about lived experiences or inner lives.
Sehreen: I think it’s really inaccessible for people whose inner life feels central. I live so much of my life here [Sehreen points to her heart]. And I understand the world from here. I operate from here. And I think influencer culture asks us to operate from somewhere else.
Sara: When did you first recognize that momfluencer culture might not be representative of many folks’ lived experiences?
Sehreen: When I was on maternity leave with my oldest daughter, who’s almost nine, I wrote something about a Pottery Barn magazine having no people of color in it. And you know, I was irate because I was transitioning to new motherhood, my hormones were all over the place, and like, I didn’t see myself represented. I didn’t see myself. Not just in the pages of Pottery Barn, but in much of mainstream motherhood media.
Sara: Can you talk about milestones and the celebration of those milestones both in life, and online?
Sehreen: Yes! But first, I’ll provide a little context for how I started to think about milestones. I quit my job in 2018 when my daughter started missing developmental milestones. We didn’t receive a definitive diagnosis until 2021, by which point I was living an atypical schedule packed with 18 therapy sessions per week. In mainstream momfluencer culture, moms are talking about being sleep deprived with newborns (which is SO hard), but they’re not necessarily talking about carting your kid to 18 therapy appointments per week. In some ways, I was looking for an online home so I could feel less alone in my experience, and frankly, maybe less at fault. Because for so long I felt like I must’ve done something wrong for my daughter to have gone through what she has.
Within a month after her diagnosis, my daughter went through a six hour surgery with the best pediatric neurosurgeon we could find. We were supposed to be in the hospital with her for 5 days. We were there 2.5 months. One of the biggest issues is that she lost her swallow function during surgery and it took her a year to rehabilitate, with INTENSE therapy, INTENSE battles with insurance, and INTENSE masking on my part of appearing to be almost normal on the outside but really nothing even close to normal on the inside. We had a whiteboard wall full of the feeds she had to get (which I had to battle the medical device company on every month), we've been in the ER several times, and we have more doctor's appointments than I have hair on my head.
This is where social media is interesting. My world of medical needs moms is an implicit tribe. All of us are fighting different battles, but we get that we fit in a different category. We’re not liking the posts about how annoying it is to wash infant baby bottles as much as we are activating our own networks to help the mom who posted about feeding her child with food allergies during the formula shortage.
I do think all parents, mothers especially, confront widespread systemic failure – we’re all depleted. And I think moms in atypical caregiving situations are more invisible because it feels like few really try to witness what we go through. And that's the gap - the lack of witnessing combined with the systemic failure that special needs/medical needs mom experience more acutely. Medical needs moms (or any mom of a kid struggling with something) can witness mainstream parenting accounts online, but the reverse is rarely true. Because no one really wants to hear about sick kids or kids who struggle. It's taboo.
Sara: I think this also clarifies how the narrative of mainstream momfluencer accounts is very much one of upward momentum. A celebration of life’s best moments.
Sehreen: Right. And people don’t talk about health issues. When I first started researching for Sleuth, I was really looking into speech development, because often that is the first sign of other pediatric health issues. And there were a few accounts back then, but now you have folks like Ms. Rachel, who has totally exploded. A few years ago, though, Instagram accounts dealing specifically with speech delay tended to be pretty small. But if you went on Facebook, you could find these massive parent groups, which could be SO amazing for moms searching for answers. These groups are also a bit anti-influencer. Like, if you try to “influence” in these groups, you will be expeditiously kicked out.
Sara: And do you think that parents and mothers are going to social media to figure out their health questions and concerns because of bigger issues within the healthcare system? I mean, why are we googling speech delay and going to Instagram or Facebook rather than calling or pediatrician?
Sehreen: I think we are calling our pediatricians. I think we also ask quite a lot from pediatricians, many of whom are leaving the workforce because of burnout. I mean, what other doctors are tasked with taking care of a body (that changes so much!) from age zero to eighteen? Pediatricians are also not trained in speech development specifically. And with so many of these developmental milestones, the protocol is very much “wait and see.” There’s often good reason for these protocols, but that doesn’t release parents from worry. So we go to other parents online. Because despite how I might feel about mom influencer culture, I do, by and large, trust other moms and their relentless search for getting to the bottom of their kids’ health concerns.
Sara: I mean, as moms, we're supposed to somehow know what's best for our kids. And we're really given so few tools or resources. So I completely understand looking online for help. And I’ve certainly done so myself! But what’s the danger of bad faith actors getting involved and upholding themselves as experts without proper credentials in these parent communities?
Sehreen: There’s room for harm. Sometimes the loudest person gets the most views, right? But it’s only one piece of the puzzle which can be mitigated. Wall Street Journal came out with an article about how Facebook mom groups stress moms out. And I felt triggered by it, because there’s another side of the story totally ignored in that assessment. Often, one parent will simply share a story about how she accessed care for her child, and her story will give another parent context she can use to get her own kid care. That happens time and time again. Personally, for example, I had no idea what early intervention was until another parent shared her experience with me. So many parents have told me that the most helpful health advice came from other parents, advice about specialists, how to advocate for early intervention, what to use an OT for, how to know if your child might have ADHD, etc. And this is a circumstance where technology has the capacity to actually do a lot of good.
With Sleuth, you get a bunch of parents who know a lot about their kids. You apply machine learning to their knowledge, and then you are actually almost guaranteed by data science that you are surfacing the most reliable information. So anyone who claims that Windex will cure the common cold is not going to show up on Sleuth. We can do incredible things with technology if we do them thoughtfully.
Sara: Ok, I know nothing about this, so can you talk me through how Sleuth weeds the Windex people out? How does Sleuth ensure that the most helpful, factual info rises to the top.
Sehreen: We have basically surveyed 62,000 parents. So in that data set, maybe 10-15 are making Windex claims, and they are literally outnumbered by everyone sharing legitimate information. Our model will show the Windex claims as being backed up by very few people. And then you have ways to actually correlate symptoms and treatments together that makes claims like this clearly erroneous. We also have actual human eyes looking at this stuff and deciding whether or not the Windex claims go in. They don’t! I also want to clarify: we don’t do diagnosis. We simply provide crowdsourced information about parents' next steps based on similar symptoms and diagnoses to your child's.
Sara: I can see Sleuth being really helpful in terms of collecting informed questions to bring up at a doctor’s visit, for example.
Sehreen: Very helpful. One thing I am constantly fighting against is this notion that once you become a mother, you suddenly know less. WHY? It’s so sexist. The amount of times I get underestimated when people I find out I’m a mom is mind-boggling. You now have another human under your care 24/7, and suddenly you know less about the world? But think about children’s health – so much is based on what you know about your child. Think of common ADHD assessments, for example, which explicitly ask for parent observations. You know a lot!
Sara: Can you talk more about the need to feel witnessed as parents?
Sehreen: During the almost three-month stint in the hospital with my daughter, Labor Day came and went. I remember looking at the East River in New York on Labor Day as boats passed by. I pictured everyone traveling to the Hamptons or to barbecues or to the beach. And here I was, getting no break. And in the moment, something just shifted for me. And I posted something on Instagram about it, which was really the start of me sharing more online.
My therapist recently asked for an update on my daughter, noting that I wasn’t telling her (my therapist) much, but she could see I was posting about it online. What’s that about? she asked. I think I need people to see that part of my life. It hurts, not being seen. If my experiences aren’t seen by others, it almost feels like I’m not showing up to my own life as a whole person.
I'm also really reluctant to tell friends what I need and how hard it is. I think a lot of us have trouble asking for help. I think I'm afraid that people will feel sorry for me. And yet, when I don’t share, I miss the words that people might offer.
I remember once messaging with another founder, who was helping me figure out my daughter’s formula, because she actually used to work for the medical supply company that I was battling at the time. And she was like, If you need any help, just let me know. I just want to let you know you're doing a great job.
Sara: That phrase can go so far.
Sehreen: It means a lot. And I think that's sometimes what we’re missing if we don’t share. The power of witnessing someone else's inner life with their child who is struggling is amazing. It breaks you. I was thinking about Rob Delaney, the actor who wrote a beautiful memoir about his son who passed from cancer. And it’s like, we don't want to see these stories because we’re scared it'll happen to us. Which I get, because who do we love more than our children? But I also can’t sit with the lack of witnessing.
Sara: I teared up as soon as you said, “you’re doing a great job.” I think a lot of mothers do. And I think it says something about how desperate mothers are to feel witnessed and to feel like their work matters in a broader context.
Sehreen: I think all of us have something in our lives that makes us think, like, If you only knew. There’s this tendency to refer to special needs moms or medical needs moms as heroes. And if a mom is referring to herself as a hero, great. It’s right that she should name her own experience. But when that title is foisted on you, it’s very different. I do not resonate with being called a hero because it feels like a gap being placed between me and the other person. Or like, “Everything happens for a reason.” Or “Our kids are here to teach us.” That’s not fair.
Sara: And I can see the “hero” thing being a form of erasure. Because heroes are mythical. They don't actually exist. And they don't have needs. They don't have feelings.
Sehreen: Right! When in fact, I actually have more needs because of what I’m going through. Not less.
Sara: In our email exchange, you mentioned the need to celebrate children’s achievements online. Can you talk about that?
Sehreen: I mean, let’s take soccer, for example. You could not pay me enough to sign my kid up for soccer. She hates soccer. And I don't want to push her into something just to check some sort of box of my own. I wonder what signing our kids up for a million activities is actually about. For us, and our identities as parents, I mean. There’s so much fear of “missing out on opportunities” because I think so many of us feel like parenting is about how well we’re performing (I suffer that). But these “opportunities” are all wrapped up in “doing,” and less in “being.”
We left the hospital at the end of 2021, and I asked my older daughter what she wanted to be in 2022. Not what she wanted to do. And her answer was, “I want to be proud of myself.” And I think we need more room for children to be curious about knowing themselves or about who they’re becoming; there’s always so much pressure on doing and achieving, which is directly related to capitalism, which is why these “doing” things are always so celebrated on social media.
You can see this so clearly when you're parenting a child with disabilities, i.e. that we want our kids to perform and be productive and be physically capable, etc. etc. The kid who goes to ballet and outperforms; the kid who enrolls in soccer at the age of 4 and scores a goal ---- it all feels like achievement. And achievement is great, that kid and their parents should be happy about the goal! But we can also celebrating being. Because it often feels like capitalism is overreaching into our family life in the most intimate ways. Like, I need to buy this. I need to perform this. But who are you? Are you the person who speaks up if they see someone left out on the playground? That’s not capitalism. That's community.
Capitalism doesn't like anything that's broken, particularly bodies. And so it can feel, sometimes, like it trickles down to what we expect kids' bodies to do (sports, singing, not being lazy) (this then extends into how we treat the elderly). But if your child's body can't do something, then what? Then, as medical moms learn fast, you just be.
And it's hard to de-program into that being-ness but for me, it's been a gorgeously liberating space to know that "being" is a more fundamental human value that "doing.” I'm happiest when I'm working, and I'm a perfectionist, which makes it really hard for me to just "be" and so I'm coming to the conclusion that "being" and "doing" can co-exist; similarly, I don't think capitalism is necessarily bad, it's just important to know what we're participating in and making a choice of when/where we participate in it. Ideally, moms would be able to navigate the spaces of community and capitalism more seamlessly and have options for both. Without capitalism, many of the recent inventions that make our lives better - breast pumps, Ubers, Instacart, telehealth - wouldn't exist. And with community, we'd feel more witnessed, seen, and supported.
Sara: How does achievement and the celebration of milestones show up in your life as a medical needs moms specifically?
Sehreen: Medical needs parents also want achievements for their kids: that first bite of food at the age of 5; the first day of non-seizures; the first time going to the doctor's appointment and taking the IV with bravery. But we don't get to celebrate those wins with a broader community. But they should be noted, which is why, for example, when we designed the health tracker on Sleuth we made it as flexible as possible.
Sara: Since you’ve started sharing more about your experience as a medical needs mom, have you forged online community? And how does the experience of sharing and the experience of witnessing different feel different, for example, from talking to your therapist?
Sehreen: I think sharing online allows access to comments like “You’re doing a great job,” or “I see you,” or “What you’re going through must be so hard.” Psychologically, that does a lot for me. And people have told me that my sharing has helped them acknowledge some of their own struggles. I have a friend whose son was hospitalized because of the flu several years ago, and she was like, You know, talking to you has made me realize I have my own medical trauma I never processed. So there’s that. And also, I’ve gotten practical, tangible help, like with insurance issues after posting about them online. And there are so many other moms creating incredible communities online. It’s really empowering and humbling. And I'm so excited to see that space be filled with their voices.
Sara: Anything else you want to add?
Sehreen: When people go through hard things, they try to find meaning. And the meaning-making can be very beautiful. There’s so much beauty to be found through hardship, and I want people to feel peace from that.
Thank you so much Sehreen!
In the spirit of crowdsourcing and community strengthening, which social media accounts have helped you with a parenting situation not often addressed in mainstream momfluencer culture? I’m opening up the comments for everyone this week, but if you’d like regular access to In Pursuit community discussion, you can upgrade here.
Fantastic piece and I'm jazzed that the world has Seheen contributing in her perfect way. I am 2/3 through Momfluenced - excellent, horrifying, validating. I have a 15 yo with neurodivergence and I've always cringed at the term special needs. I call it extra needs. My younger child doesn't struggle or need all the interventions my 15yo does and parenting her is a relative breeze. "Special" feels like gaslighting in some ways. It ain't special: It's exhausting, worrisome, demanding, lonely, full of second-guessing, expensive and heartbreaking. I think there's also the issue of posting about the truth and then perhaps having to navigate the following responses: advice and/or brightsiding. I've learned a lot from the work of Kate Bowler (would love to hear Sara and Kate weigh-in on prosperity gospel/new age intersection of mom culture and she interviewed Rob Delaney for her podcast for upcoming episode) on how the overlay of hero/bravery/everything happens/brightsiding/advice-giving/pity makes the journey so much harder for those of us navigating hard stuff. Ultimately, if we in the trenches find a way to find or create meaning from our experience it's for us to proclaim as true for our journey and not universal truth. Suffering platitudes leaves others feeling like they helped us (or at least helped them feel better with their discomfort about our situation) and leaving us to feel gaslit. The creation of the machine-learning assisted app and being honest about the challenges of having a child with extra needs is a real gift. Thank you Sara and Seheen.
This is a shockingly wonderful interview and piece of writing. I feel so validated and seen and inspired and empowered and humbled. I never would have heard of Sehreen or Sleuth otherwise and I am so, so grateful. Thank you so much.