I'm Amber, and this is about IBD.

I'm a medical writer and patient educator who lives with a J pouch due to ulcerative colitis.

It's my mission to educate people living with Crohn's disease or ulcerative colitis about their disease, and to bring awareness to the patient journey.

Welcome to episode 179.

Having a form of IBD affects all aspects of our lives.

This includes our relationship to religion and spirituality.

Many people with chronic illness look to their religious beliefs for comfort when coping with the ups and downs of their condition.

However, there are many ways in which caring for one's IBD and observing religious practices can be in opposition.

This includes following a diet for IBD that doesn't include religious foods or allows for periods of fasting.

There may also be exams, tests, or treatments that don't accommodate religious beliefs.

My guest is Hindi Klein Hindi is a member of the Orthodox Jewish community.

Hindi has discovered that she has to carefully advocate for herself in order to both receive the care she needs and educate health care providers on Jewish law.

She also describes the support she's received from her community, and how being open about her life with Crohn's disease on social media has affected her both mentally and spiritually.

Hindi.

Welcome to about IBD.

Thank you.

Hi.

Let's first start with an introduction so our listeners can know a little bit more about you.

Would you please tell us a little bit more about yourself?

Sure.

So I'm Hindi and I have what we call Crohn's colitis.

I was originally diagnosed with ulcerative colitis, later changed to Crohn's.

And at this point we're not sure which one it is.

So we just call it Crohn's colitis.

Professionally, I have worn many different hats.

I've done quite a few totally different things in the past.

Right now I'm focusing on being a mom to my kids and I also do some social media content creation, which is sort of like a hobby more than a profession for me.

I grew up in New York and about 30 minutes from New York City, and now I live in South Florida.

Wow.

So you have gone.

You've gone the whole spectrum.

You've been diagnosed with like every different form of IBD.

How has that affected you?

Were you surprised at these differences in diagnoses or did it make sense?

Yeah.

So when I was diagnosed with ulcerative colitis, I was really, really sick at that point.

And I remember like, I was trying to find something to be grateful for.

And I was grateful that it's colitis and not Crohn's because for some reason, in my mind.

Yes.

In my mind, I knew that Crohn's can affect anywhere from the mouth all the way down to the anus.

It just sounded so much worse than my mind.

So I was like, okay, at least it's only colitis.

So then when I was diagnosed with Crohn's, it Crohn's.

It felt like a huge blow and I was I was very upset about it.

Um, and I went through that grieving process again.

Um, as time went on, I realized there is no difference.

My case was extreme either way, honestly.

And then when my doctors, like, once I moved here to Florida, is when my doctor started questioning my diagnosis again.

It just created confusion, to be honest.

Um, at this point, I'm still pretty confused about it.

I'm not sure what to call it.

I stuck with Crohn's just because I got used to calling that for so many years.

Yeah, and do you think that it's easier to describe it to people, for instance, outside of the IBD community and outside of the medical community?

If you just say Crohn's because people have heard of it largely.

Yeah, definitely.

Has that really affected your treatment, though?

It seems like ulcerative colitis and Crohn's disease are treated with a lot of the same medications.

But did you need to change things up when the diagnosis changed.

I don't remember what difference it made when my doctor changed my diagnosis.

I was still in pediatric in those days.

Yeah, at this point.

So the difference that my doctor explained is if so, it affects my colon.

So if I ever need surgery, the difference would be.

With Crohn's they usually just remove the disease portion because it would still they could still come back anywhere.

Versus with all sort of colitis I believe they remove the entire colon.

Like let's just get it out.

Yeah.

So that would be the difference down the line medications.

Most of them do treat both like you said.

Um, at this point I'm on Inovio which does treat both.

So there is no real difference.

Right?

How do you feel, though.

About being in the community and then feeling a little bit like you don't have a really firm diagnosis?

Does that change how you relate to other people within the IBD community.

That much I do have.

IBD.

Um, yeah.

I do find that I've experienced things that nobody else has experienced in certain ways.

Um, which makes me feel a little bit like the odd one out.

But for the most part, I don't.

I don't notice anything.

That makes sense.

I understand what you were saying about the difference between ulcerative colitis and Crohn's disease.

When I was diagnosed, it was long enough ago that they really did make the two diseases sound totally different, and that they did make Crohn's disease sound a lot worse than the things that I was reading and come to find out.

I mean, honestly, it's six of one and a half dozen of the other, you know, truthfully.

But I understand where you were coming from with that, because I believe I did have people actually say that to me.

At least it's not Crohn's, which is a wild thing to say to somebody.

But.

So that that's not really our topic today.

Uh, our topic today is faith and how it intersects with a chronic illness, like living with an IBD.

So let's first begin with a background handy.

I wonder if you would tell us a bit about your religious background.

I was born Jewish.

My family is very Orthodox, specifically Hasidic.

My family background is very European.

My great grandparents all lived in Europe before the Holocaust.

My father's side of the family emigrated to Israel before the Holocaust, so they didn't actually go through the Holocaust.

My mother's grandparents did go through the Holocaust.

My mother's father actually grew up in Brazil.

That's where my great grandparents went to after the Holocaust.

But my parents both grew up in the US.

They were born and raised in the US, but they do have that very strong European background.

And my father also has a bit of that Israeli culture mixed in.

I grew up in a very Orthodox community and went to an all girls school.

Our day was split in half.

In the mornings we were taught Jewish studies and in the afternoon we were taught secular studies along the level of all the other schools.

I think our school day was longer than the average school, but we had that morning time where we were taught Jewish studies.

My husband's background is slightly different than mine, but similar enough.

He's fourth generation American from his mother's side of the family, so he didn't really grow up with as much of that European mentality.

Right now, we don't live in a Hasidic community here in Florida, but my husband and I still consider ourselves Hasidic, though some will say that we're pretty unique.

And so how do you find this balance?

Because you're managing the IBD.

You are observing holidays according to your faith.

And how do you make adaptations around keeping those two things together?

Okay, so first I want to explain to those who are not so familiar with what Shabbat and what our holidays look like.

So Shabbat is what we call every Saturday.

It's our day of rest and we don't use any technology, so I won't use my phone.

We don't drive cars, we don't turn lights on and off and all that kind of stuff.

And then we have some holidays throughout the year.

Not all of them, but many of them have similar laws as Shabbat with slight variations.

So on a weekly basis, on a regular Shabbat, it doesn't really interfere with my IBD, except that I very much look forward to it, because I get to catch up on some much needed rest and sleep.

There's nothing else to do.

It's just family time and we just get to relax.

Food wise, it could affect me.

We have.

We eat very large meals on Shabbat, so at home I figured out what to eat.

That makes me feel good.

When we get invited out is a little bit more of a challenge.

And then the holidays, we usually tend to go away or eat out more so that you know, was a challenge again and also specifically Passover.

We have much stricter rules regarding food, and they're not necessarily IBD friendly.

So I know that we all, you know, the whole Jewish IBD community, it's a big topic for us how to get through it.

Another challenge is being in the hospital over Shabbat or holidays.

I had that recently.

Another challenge is experiencing an emergency on Shabbat or holidays because I can't use my phone to contact my doctor.

Another challenge is if a holiday falls out during the week, so we have a different calendar than the regular calendar.

So it could be, you know, the holidays always fall out in different days of the week depending on the Jewish calendar.

So if it falls out during the weekend, I'm waiting to hear back from my doctor.

It could be a little anxiety provoking to not be able to communicate.

We have two big ones and then some smaller ones throughout the year.

We have fast days so that could be challenging as well.

Another challenge I had this recently actually, is I was waiting to have a seat and topography and they didn't have any soon enough.

Any available appointments.

Soon enough they did offer me one on Saturday, but I had to decline.

Mhm.

So regarding the hospital, the challenges there is that there's so much electricity involved.

So like adjusting the bed up and down, unplugging the IV pole every time I want to go to the bathroom.

So I'm not going to go into detail about what my rabbi advised me to do, because I think everyone needs to ask their own rabbi.

There are definitely leniency for people who are dealing with illness.

The beauty of Judaism is that we're meant to live by the laws and not suffer because of them.

It's a big part of Judaism, so there are many ways to work around the rules to make things more manageable.

Uh, for those of us who have medical challenges.

So the same also is for fast days.

So especially for women, we easily get away with fasting the little fast.

I've never fasted those, but the two there are two big fast Asian Kippur.

And then there's another one in the summer.

Um, so those of us who have a hard time fasting due to medical issues, we could also ask a rabbi and get quote unquote permission.

Not too fast.

And I want to be clear.

It's not that we need.

It's not that the rabbi controls what we do.

It's just like, you know, how you run certain some things by your doctor to make sure that it's you're doing the right thing because they're more knowledgeable in the intricacies of everything.

So the same way rabbis more knowledgeable in the intricacies of Jewish law.

So I like to run things by my rabbi to make sure that I'm doing the right thing by not fasting.

Um, I also want to mention that Jewish law is all about, um, human life being the most important thing, and we're required to break the laws of Shabbat in order to save a life, even if it's only like a situation that could potentially become life threatening.

We break Shabbat.

It comes first.

Um, I had it recently.

A few months ago, I had, uh, something happened where there was a chance that it might turn into something.

I opened my phone, called my doctor.

I had my phone on me till they called me back.

There was no problem.

Right now, if there's something I could anticipate before Shabbat or holiday.

Then I'll be proactive and reach out to my rabbi and ask for guidance.

But like I said, if something occurs on Shabbat or holiday, I'll always trust my gut and earn the side of caution and break the laws.

If you know if I need to.

If you do need to break one of the laws and you didn't anticipate it.

Is there anything that you need to do afterward?

Do you need to go and speak to your rabbi and discuss it, for instance?

So.

I don't have to.

If I ever not sure, did I do the right thing, did I not?

Then I might run it by my rabbi and be like, hey, did I do the right thing?

What would I do if this comes up again?

That makes sense.

Coming up.

Hindi tells us why keeping her journey private was worse for her than being public.

As you're coping with the ups and downs of IBD, what helps you cope spiritually and mentally?

So I very much believe that every person in this world is in this world to accomplish something.

Every person is different and unique because they each have a unique mission in this world.

So I'd like to look at my journey as my compass of life.

So everything I go through leads me to where I'm meant to be.

Um, good or bad?

Looking back, I can always see how whatever I went through has brought me to where I am now, has brought people into my life, and has taught me lessons, um, has and also shaped me to who I am.

You know how I cope with different things and how I view life and different, even just people.

So when I'm down, it helps to know that this is just part of a big picture.

There have been times when I was hard on myself.

Like, why can't I see the bigger picture and just not be so sad and down?

But I've come to realize that no, I can't always see the bigger picture.

But I do know that it's leading me somewhere, and I'm going to have that to look back at once I'm out of this, and then when I'm up, I can always appreciate what it took to get me to where I am.

Mhm.

Hindi.

In the planning of this episode, you mentioned to me offline that the Orthodox community tends to be more private about certain issues, and chronic illness is one of those issues.

So I wonder if you would explain what is prompting you to share your journey more publicly.

Sure.

So I'm going to speak for my community, which is the Ashkenazi Jewish community.

It definitely varies in different communities.

So my community were largely from Europe.

So, like I explained, the European mentality is very much to keep things very private.

My grandparents specifically are very fine and proper people.

They don't talk about certain things.

My grandmother won't even say the word pregnant.

Oh goodness.

So when I was first diagnosed, my parents kept my diagnosis a huge secret.

Everyone knew I was very sick.

It was very obvious.

It was impossible to hide it, but nobody knew what my diagnosis was.

I was young and I just went along with it.

I was also very, very private back then and had a very hard time even talking about my symptoms.

But then once I became an adult a few years later, I realized I needed support.

I felt very alone.

I felt like I was the only one that ever went through anything like this.

And slowly, slowly, I started opening up to people about my story, started telling people that I have Crohn's, and I found so much healing in that.

And I realized that I have a passion for showing others that it can be done.

You know that you don't have to keep it a secret.

Also, my husband, as I explained, is more American, so he has less of this private mentality.

And he has also helped me become more open to sharing as well.

I actually had a few friends who were extremely private.

They were so scared to share anything about their condition, not just Crohn's, but like other things as well.

And I'm going to pat myself on the back for inspiring them to, you know, become more open about it.

Like they would join only join virtual support groups with anonymous names like that's how private they were about it.

And they've told me that it was it's been life changing for them.

Like they practiced specifically telling people strangers about it just because it gives them such a good feeling to be open about it and not keep it inside.

This only helped my passion grow, and I realized that by being the one to share my story publicly on Instagram, it's pretty scary, I'm not gonna lie.

Um, but I realized it's going to create a change on a much larger scale.

I don't believe everyone needs to go so public with our story, but I want to help people realize that you don't have to have shame, fear, and stigma with your condition.

That's incredible.

You really are making a huge amount of change in in people's lives.

And not just people that you don't know, but people that you do actually know, which is, you know, absolutely, totally inspiring.

And I wonder, though, with it being so difficult to even discuss your symptoms, how does that make doctor's appointments challenging?

It was very challenging at this point.

I'm totally not like that anymore.

I think I could discuss anything on my visits.

I don't need any coaxing, but back then I actually had an incredible nurse practitioner.

Um, we had a great relationship.

I really trusted her and she looked at me in the eye and one day she's like, Hindi.

I love to talk about poop, so please talk to me about it.

And that really, that really did the trick.

It really I'm not going to say it was like overnight, like, yeah, um, 180 degree change.

But it did slowly show me that?

Oh, I'm talking to people who want to hear about it.

And there are people I can trust so I can tell them about it.

Totally.

Oh, that's.

I'm so glad that you had that experience.

And it gave you permission to actually discuss what's going on with you, because you can't get any better if people don't actually know what's happening.

So also, my doctor has learned that when I say that I'm good, that means that I'm good.

That's funny.

I was just having a conversation today with somebody where we were talking about how when someone asks us how we are, the answer is, I'm fine, but you're never fine, right?

That's not truly what's going on.

It's just that actually explaining what's happening with you is sometimes it's, like, too long.

It's gonna take too much.

I'm fine.

Exactly.

Hindi.

Are there any myths or misconceptions that you've seen about what it means to live with a chronic illness?

As an Orthodox Jew.

So when I lived in New York, I think that all medical professionals like, received like I think the big hospitals there gave all their, um, employees training on, I think, all religions.

But I've seen it with, um, Judaism and they were all very educated.

Like if I would have a male doctor, he would walk into the room.

He wouldn't offer to shake my hand.

For those who are not familiar.

Not everyone is very careful with this, but I don't.

I wouldn't shake the hand of someone of the opposite gender.

But here in Florida, I don't find that to be the case at all.

I find that one of my doctors is Jewish.

She's a little more familiar than the other ones, but my other doctors really don't know much about any of the Jewish laws.

Recently, I actually saw a male doctor and he didn't know about not shaking my hand.

So he walked out and he offered his hand and I explained to him that I'm Jewish and I don't shake hands with anyone of the opposite gender.

Later on, I went back to my visit notes, and I saw that he wrote that I declined a physical exam because of religious reasons.

And that's a big misconception.

Yeah.

For medical purposes, I'm allowed to have a male touch me, which is for social reasons.

I'm not.

Another thing is that maybe this is protocol, but before my surgeries, I always get asked if I'm willing to receive blood transfusions.

I know some other religions wouldn't accept blood transfusions, but for us, it definitely is.

Yes, I've actually received blood transfusions in the past.

Like I mentioned earlier, our priority is life.

We value life a lot, and whatever it takes to save a life, we do it.

I think that people don't realize how much, how much nuance there is.

Yeah, there's a lot, a lot of nuance.

Hindi.

Are there any particular prayers or teachings that you turn to for comfort and strength?

So I'm not very into prayer.

I never really connected to that.

I also like to form a deep connection, like with my soul and with God.

So there's a concept in Judaism called emunah.

And so those are Hebrew words that mean belief and trust in God.

I like to learn a lot about what that looks like and how I could apply it to myself.

I'm always a work in progress, but overall I try to let go and leave things up to God.

The more I'm able to do that, the easier it is for me to cope with things mentally.

Um.

I've come to a place of fully trusting that God does not make any mistakes, and all my health struggles are part of my purpose in this world.

Um, this gives me a lot of peace.

And it's part of why I'm so passionate about sharing my journey publicly.

I feel that by inspiring others and helping others and fulfilling what God has intended for me to accomplish in this world through my health struggles, this is why he gave it to me.

The messages I receive, such incredible messages on my page, and those like people tell me that you know how much it means for them to see what I share.

And those messages have definitely affirmed that, you know, this concept for me.

And they really keep me going.

Mhm.

And support from the IBD community is so important.

It's a huge part of the journey.

What kind of support have you received from the Jewish community or through your synagogue?

And then I wonder if you would also tell me a little bit more about the support that you receive sharing your journey on Instagram and other places?

Sure.

So there's so much I hope I remember everything.

Um, that's something about the Jewish community where there's an organization for everything.

We're very into helping each other out.

Um, so specifically for what I deal with, there are some incredible organizations out there, and they've helped me a lot.

I'll talk about my hospital experience.

Um, each day it was Passover.

So there were volunteers that came by my room to offer kosher for Passover home cooked food so I wouldn't have to eat the hospital food.

Um, somebody, a different volunteer would come by also and ask if there's anything I need at all so she can get it for me, or take care or arrange or anything.

Um, also in the case I would be discharged on the holiday.

They have a service that I can have the hospital call, and they would send a car to take me home.

Also, in all the big hospitals, they have a kosher room with food stacked up.

So if anyone ends up in the hospital at any time, they always have access to kosher food.

Um, that has been tremendous.

Not just now, but anytime I've been hospitalized.

I actually met some of my best IBD friends through some of these organizations.

They have some support groups, um, virtual support groups, even in person.

Another story I had recently is that I've been trying to get in to see a certain specialist.

There's another condition I suspect I might have.

Um, and the disappointment they had available was in six months.

So I actually posted about it on my Instagram page, and several people reached out suggesting different organizations I could reach out to.

So there's one that's known to help patients get appointments that they need sooner.

Um, but they're based in New York.

So I reached out to them and they told me they probably can't do much.

They're going to try to help.

A different friend reached out to me.

She's a nurse, and she's on a chat with a bunch of nurses.

And the purpose is to try to help other people.

So she posted it on that chat, and she got me a contact for someone that's part of an organization here in Florida.

I got in touch with him.

He got in touch with a doctor that works with his doctor, and I got an appointment for this Wednesday.

Oh my gosh.

Yeah, that's six months sooner than I would have gotten otherwise.

Yeah.

Also, when I was recently hospitalized, I had surgery.

Um, my community stepped in tremendously to support me.

Um, so it happened while I was out of state, and they all did so much for me.

They sent gifts.

They, um, offered to send food.

They offered to take care of my kids, which I didn't need to take them upon up on.

But, um, just having that support just meant so much, and it really kept me afloat.

And then once I got back here to Florida, the women from my synagogue set up a meal train so that I had time to settle back into routine without having to cook for my family.

Wow.

That's amazing.

I found it scary watching you're watching your journey on Instagram when you were hospitalized like that and you weren't.

You weren't even at home.

You were away from home.

That was really something else.

I'm so glad you had all that support at that time.

It's really what kept me going.

Yeah.

Gosh.

So how about in the IBD community?

How has sharing your story and getting more involved affected you?

So it has given me such a strong feeling of fulfillment, like nothing ever has other than being a mom.

I've come to learn that what I feel so passionate about something, then that's a clear sign that it's my mission.

Like my God's plan for me and my mission in this world.

Um, and this really helps me when I'm in pain or dealing with a challenging situation.

I can understand that there's purpose behind it.

I love that that's how you think of it, because sometimes it's hard to see what the overall reason for things are, and but trusting that there is a good reason for it.

Um, I think is is a big comfort.

I should say it's a lot easier said than done.

I'm not perfect about this 100% of the time, but I think having it in the back of my mind really just helps me stay afloat.

Yeah, definitely.

So, Hinda, you are a mom.

I wonder, could you tell me a little bit about your kids?

Sure.

So I have a five year old daughter.

She's a Covid baby.

She was born at the end of March in 2020.

And then I have a set of twins, a boy and a girl.

They.

They're actually turning three soon in August.

Um, they were born when my daughter was two and four months.

So that was a bit of a hectic two and a half years.

I feel like now it's starting to get a little easier.

My twins are much more independent now.

They are so cute.

I love to see them on your Instagram.

And so I'm going to lobby for as much content with your kids involved as possible, because I love to see it.

Thank you.

Do you have a specific gratefulness practice?

I don't, and I'm not going to say this is for everyone, but for me, I am naturally a positive person and I find that I have a tendency to lean towards toxic positivity.

So for some reason, I find that if I focus too much on being grateful, I don't give myself space to sit in my negative feelings and I think I need to learn that more.

I don't, I don't focus on being grateful.

I think I I'm pretty good about it.

Naturally.

Great.

Great.

Well, you can always sit next to me.

So anyway.

Andy, I want our listeners to be able to find you online.

So where can people find you?

So my Instagram handle is hope in Hindi.

I'll spell that.

It's h o p e I n h I n d.

I love interacting with my followers.

My DMs are always open.

My favorite part of Instagram is getting those DMs and I always keep my DMs private.

I never share with anyone.

I never share screenshots.

Nothing like that.

So you know, if you feel like it, reach out to me.

I'd love to chat.

I love that you brought that up because I.

I am the same.

I will keep DMs private and even, uh, other, you know, any form of communication, any patient that's reaching out to me about something.

I always keep that private.

I would I would never share a screenshot of it.

So I'm so glad that you brought that up.

So to point it out that it is a safe space to discuss things, it's not going to go any further than the DMs.

And I'm very non-judgmental that people tell me, like, I I've had it where people are, like, so hesitant to share something with me because I might judge.

I I'll never judge.

Yeah.

I've been through enough of my own things and I always had that fear of judgment.

So I know there's always a reason behind whatever anyone is dealing with and the way they cope with things 100%.

Totally, totally agree with that Hindi.

This episode was your idea.

You came to me and you offered yourself up.

I'm so grateful for that.

Thank you so much for everything that you're doing for the IBD community because it is so very needed.

I was trying to do some more research on this topic and was not coming up with very much.

So.

Hopefully after people listen to this, there'll be some more things that we can engage with in talking about how faith and IBD intersect.

So thank you so much.

Thank you so much for having me.

Hey super listener.

Thanks to Hindi Klein for being so transparent about her journey.

I looked into the research on faith and IBD or chronic illness in general, and there's not a lot of research in this area, nor is there a lot of discussion about it.

I hope Hindus work is the beginning of a larger conversation.

As always, links to a written transcript, everyone's social media handles and more information on the topics we discussed is in the show notes and on my episode 179 page on about IBD.

Thanks for listening.

And remember, until next time, I want you to know more about IBD.

About IBD is a production of Mail and Tail Enterprises.

It is edited, written, produced, and directed by me, Amber Mixon.

Sound design is by Matt Cooney.

Theme music is from Cooney Studio.