Divya: So Molly, first off, thank you for meeting with me today. It’s been a little bit of a logistical nightmare putting this meeting together because according to Zoom it’s the end of the pandemic! We’ve lost our free unlimited 1-on-1 meeting privileges. You heard it here first folks, 40 minutes of free time is all Zoom gives us now. 

Molly: Yeah, I still use Zoom for a lot of my consulting meetings and who meets for just 40 minutes, right? You need at least the hour.

D: Well let’s hope this interview gets in the hands of the right people then! But in the meantime, why don’t you tell us about yourself a little bit. Your journey so far and your brand BetterBelliesbyMolly.

M: Alright, jumping right into it? Well, my name is Molly and I’ve been working in healthcare and public health for about ten to twelve years now.. About ten years ago, I was diagnosed with Inflammatory Bowel Disease in the form of Ulcerative Colitis. I also have Irritable Bowel Syndrome (IBS-D). Anxiety, of course, comes with that entire package. And in 2018, I was just sick of living alone with this– with the symptoms, the pain, the struggles. I had learned so much on my journey, I wanted to make sure other patients didn’t feel like they were alone. Thus began BetterBelliesbyMolly, which started as a blog, which is now an Instagram account open to the public!

D: And your page is extremely well-curated and gives a lot of great advice. I think that people are very lucky to have someone like you speaking so openly about, frankly, a topic that a lot of people don’t want to discuss. There is obviously a lot of stigma surrounding digestive system issues. Our society often marginalizes these topics as impolite conversation, but like you’d probably say, your body is your body and you have to find a way to let it take up space in this world.  It’s going to become very clear in a minute how much I’ve stalked your page, but why don’t we start with you describing your diagnosis journey. Through your lens, what was that like?

M: I was one of the lucky ones in that I had to fight for good care, but I did not have to fight to get my diagnosis. For me, symptoms started with bowel urgency, cramping, diarrhea… and then more diarrhea. I just felt so fatigued all the time. Eventually,  came the bloody bowel movements, which is when it became clear that something was really wrong. And really scary.

D: Of course. 

M: So I went to my PCP with all my symptoms and he sent me to a GI. The first GI I went to was very curt, not very warm at all. He performed a rectal exam, which I was not at all prepared for. Honestly, I felt violated a little bit. I did not have a warning. I certainly didn’t know what to expect. Afterward, he just said to me, “Okay! You’re going to need to have a colonoscopy. You should have someone with you after the appointment. Here’s a video, you can schedule it on your way out.” And then she just got up and left. That’s it. At that moment, I had to do everything I could not to cry in the clinic. I had just moved to this new city (Atlanta); I knew no one; I had no one to take me to this visit. I just felt so defeated, deflated, alone, and scared. I don’t feel well, I don’t have social capital; how do I do this? I was lucky enough that ultimately, my parents had the means to fly me to Vermont, to where they lived and go to their colonoscopy office. But you can’t help but wonder about people that don’t have that option. And even with me, I had to take off work, which was an 11 dollars an hour gig at the time. So you don’t get paid if you don’t work. I was on the verge of tears constantly. I got my results eventually over the phone, being out of state. And I was sitting in my car, listening to the doctor through this speaker when I had to face the fact that I suddenly had an incurable disease that I would have to live with for the rest of my life.

D: I cannot even imagine what that was like.

M: And obviously he couldn’t even give me resources over the phone. So I had to follow up with local GIs, a lot of whom told me repeatedly “This is just the nature of your disease. There are good days and bad days. That is just how it is.” I remember saying over and over again that I was not okay, that I couldn’t live like this… but there was nothing out there for me. I eventually met with a physician associate in a GI office one day and she was the first person, after months of this constant shutting me out, to tell me, “Hey, actually, the goal of healthcare is to help you find a way to live with this condition. We do have things that we can do for you. The goal is to get you in remission.” This was completely news to me. 

D: Let’s hone in on this life changing physician’s associate experience that you had. As you probably know, PAs often train under doctors. This is great, but I also believe very strongly that future doctors should train under RNs, PAs, and NPs and other such professionals as well. What do you think young doctors can learn from these individuals who are in different healthcare roles?

M: I think I’ve just had better experiences being listened to sometimes– people who are PAs or NPs are open to other options for treatments in my personal experience. I can send peer reviewed articles back and forth with my PA and we can talk about things that I want to try that aren’t always out there quite yet. It’s a certain shared level of decision making.

D: You’re almost part of the healthcare team with her, it sounds like. And that, in my opinion, is the future of our field. Patients and their preferences are critical in informing care with MDs and PAs or NPs. And so in that vein, on your page you discuss reckoning with the fact that you have a chronic disease. How it was sprung on you and how you had to learn how to be someone who can’t necessarily get rid of or solve this problem that you are now going to face every day. Given that reality, how did medicine as a discipline succeed in helping you or preparing you to fight this condition even when it didn’t have the perfect answer?

M: I am extremely thankful for the drugs and they are wonderful in all that they are able to do. I am also glad that medicine can give me something that works right now and something to try if that fails, and another thing to try if even that fails as my condition evolves and changes. But unfortunately, medicine has not been able to give me much outside that spectrum. Almost everything I have learned, about diet, about lifestyle, about disease, I’ve done on my own. I haven't gotten a single pamphlet, a single video, nothing. I had to learn everything about IBD- the community, the types of medication, the options, all on my own research. This is why I was “called” to share all my knowledge with others in an accessible way through something like social media. 

D: And speaking about social media, you posted just today in honor of mental health awareness month. You spoke specifically about this concept of the gut-brain connection, which I thought was very interesting. I’m curious as to how you experience this axis between the two distinct organs, and what you are doing this month to take care of it.

M: Over time, I had noticed that periods of stress would make my gut worse. As I’ve delved deeper into the process of learning about my disease, I have started to become more in tune to these patterns. Particularly with IBS, I would get really nervous or anxious and instantly I would have to go to the bathroom… my rectum would start spasming. Taking a flight, writing an exam, or like the day I got married, I had to have a talk with my body and tell it “you’re fine! Everything is going to be fine!” In terms of doing things to heal the connection, therapy is great. I love therapy. Exercising and being regular about that is really helping. Not overworking myself, especially at the end of the day, taking the extra time to put my work away. Giving myself grace is the biggest thing.

D: I do think the therapy angle in chronic illness is very important. Was that ever given to you as a referral by a GI practitioner?

M: Never! It was never recommended to me ever.

D: That is interesting, because it is pretty well documented that there is a bidirectional relationship between chronic illness and mental health. Especially IBS and IBD. 

M: Yep! I’ve been told to go relax. I’ve been told to go do some yoga. I’ve been told to calm down. But no one ever told me, “Hey! You can get actual professionals to help you with some of what you’re experiencing.” I mean, how am I supposed to relax when I feel like I am going to poop my pants every minute? 

D: That is a very good question.

M: I know this is a lot to ask– I’m a public health professional, so I’m not calling for this lightly or uneducatedly– but when you get a diagnosis for IBD and IBS, you should get links for therapy. You should get linked to a dietitian and maybe even someone else like social services who can bridge all the different streams that your care will have. Ideally, this should be a PCP’s office and yet so much of my medical reality is that all my practitioners from different specialties and treatments barely talk to each other through their interfaces. That puts a lot of responsibility on  a patient to communicate medical information that they may not be best equipped or empowered to do. And from a social justice perspective in healthcare, if you’re diagnosed with MS you need to be linked with the MS foundation; if you’re diagnosed with Crohn’s and Colitis, you need to be linked with the Crohn’s and Colitis Foundation! 

D: These support networks are important not only in helping patients have resources to advocate for themselves, but also this other dimension I haven’t spoken much about so far in my interviews… but how EXPENSIVE it is to be a patient with chronic illness. These are the places that may begin to offer patients help. 

M: Ughhh. I have to get on a call with my insurance right after this meeting actually.

D: So let’s get into that for a second, right? Because– and I’m counting on my fingers here– there is the cost of care, there is the cost of prescriptions, and then there is the cost of all these extra things, like therapy, exercise classes/instructors, specialized diets etc. How does this price tag of your disease affect your day-to-day?

M: Wow… I mean, it affects everything. It affects where you can work, because benefits are going to be such a big driver of your treatment. It affects what you can buy. I’m the last person to, I don’t know, buy an Apple Watch. Everyone is telling me I’m like eight years late to the game and yeah, I’ve always really wanted one, but I was only JUST able to purchase it because hey, I have a chronic illness and I can’t just buy things! I have to pay for pills first. And then I have to pay for doctor’s appointments and then there’s another laundry list of things that needs to come first to get my healthcare costs met. And this also means that sometimes I have to stop doing something that really helps me because it simply costs too much. Like dry needling is a therapy that helps my neck but it’s too expensive, so I have to stop it. Or if I want to do something that is not covered by insurance, then it’s like do I buy groceries or do I go to that therapy? Do I buy a new piece of clothing or do I get this new treatment that is working? Do I purchase something I want, or does what I need end up being too expensive?

D: Right… And while taking on insurance companies and health policy to make some of these things more accessible is something we definitely need to do, it’s a massive fish to fry. Today, as a patient and a public health professional, if I have to ask you at a clinic level and hospital level– or even actually at a provider level– what can we do to cut some of these costs for patients in the system, what would you say?

M: A couple of things. First, don’t make patients come to appointments they don’t need to. If and when they can do telehealth, have them do telehealth. Try to save the patient money as much as possible. Be aware of what you are prescribing and how much it costs. You have the tools to say “here’s a sample to get you started” or “here is a co-pay card,” so use them! Or telling the patient “you’re going to need this medicine and you need to do  X,Y, and Z to get it covered” or “you want to call your insurance and ask this question and this question and this question to make sure you get the best shot.” One step beyond that, clinics need to have more educated and better trained staff on billing and coding, because even a small mistake in this step can cost the patients thousands of unnecessary dollars. It can send a person to bankruptcy. These employees need to have more support and training so they can help patients.

We also need more patient navigators who can educate people on their insurance and what its difficult and obscure terminologies mean. And I know that insurance is as much of a hassle for providers as it is for patients, so providers should take the time to fight for these basic healthcare functions alongside us. I love providers who can say, “ Here is the medication I want you to take, but sometimes it is not covered by insurance, so here is what  you can try with your company when you call them. And if that doesn't work here is a co-insurance card or a co-pay service.” And asking yourself, if I need to prescribe my patient a diet, can they afford that diet? Do they have access to that in their neighborhood grocery store? Can they get to it on their bus? What is going on in their lives that influences the prognosis I envision for them?

D: I do agree. Strongly. And if you can’t have a provider do that, then you need to have someone IN the clinic that the patient can see at the same appointment whose sole job it is to counsel patients on how to manage the lifestyle features. Like if you have a patient with a chronic illness maybe you split up the appointment time between the M.D. or the D.O. or the NP and this social worker who can help them find a way to make sure their healthcare plan can actually be executed effectively! And speaking of effectiveness, one thing you talk about on your page is how paperwork and the registration process can be such a big hassle when you’re a patient. What are some of the redundancies you find in these environments that we could do better on?

M: Yeah, a couple of things. My main argument with patient forms is that there is just never enough space on them. You want to know my history, you want to understand all my comorbidities, but I can barely even fit my name on the box. How do you want me to do a thorough job giving you a picture of my health? So many of the forms leave so much to be desired. Patients cannot indicate their quality of life, they can only indicate their symptoms but not the social determinants of that symptom or the repercussions that one symptom may be having on other organ systems. And that starts a pipeline of the nurse who takes you back misunderstanding the entire truth of your experience and then the provider misunderstanding because they only have fifteen minutes to see you and then it gets billed as something that doesn’t adequately capture what is going on. You get the picture. And another piece to patient intakes is health literacy. These forms are not written at an eighth grade or lower reading level, which is how things for the general public are supposed to be written. You can’t be throwing words like hypertension or hyperglycemia out there without “high blood pressure” or “blood sugar” in parentheses.

D: You’re so right! Overusing medical terminologies can make the process of healthcare and coming to an already scary clinical environment even more alienating for a patient. And it disempowers them from their bodies to describe their health in terms that they don’t even share. And so at your intersectionality as a patient and a public health professional– essentially, someone who has sat on both sides of the paradigm– what do you think we get right among all this chaos in our system today?

M: Definitely continuing to fight for care and continuing to do research is good. Whether it’s biosynthetics or biologics, biomimetics you name it! Moving into telehealth and expanding the digital health space in general is certainly one of our greatest strengths. Also the openness that we have to partnerships with companies that bring patient perspectives into the mix. Pharma has started doing that a lot more than they used to. All of this is progress!

D: And we see that a lot in pedagogy today. Being a medical student in this decade, there is this underlying expectation that you will be a researcher too, a lifelong learner, and innovator. I think the thought with that is to put the person who is aware of the developments and also aware of the patients and their daily clinical struggles in conversation with each other through the persona of the provider, to help better serve our population. And being researchers also forces providers to be humble and recognize that there is stuff we still don’t know and knowledge we still need to get. And so with that, if I were to ask you to write an open letter to the medical system today, what would you say?

M:  For the existing providers out there I would want to say “don’t forget why you’re a doctor.” If you are not in it for the patients, maybe there’s another profession for you. The patient and their quality of life should be your main priority at work. Validate them, stand by them, fight for them, and let them know you support them. Don’t only treat them and help them get well, but make sure they can meet their goals. To new providers, I want to say, you have the ability to change… well, the world. You have the ability to change your profession. You have the right to ask how you want to practice. You can say we are not going to work those hours and we are going to fight for diversity and inclusion and justice in medical care. Rally together and create a safe space for your communities.