Episode 4: Familial Mediterranean Fever with Alyson Roux of CAN and IAHC

Episode 4: Familial Mediterranean Fever with Alyson Roux of CAN and IAHC


In this episode, Lauren sits down with Certified Nutrition Specialist and health educator Alyson Roux (MS, CNS, member of the CAN and IAHC). Alyson lives with invisible illness (Familial Mediterranean Fever and degenerative disc disease), and also operates a weight-inclusive (HAES approach) practice in Silverlake, Los Angeles. Since this interview was recorded, Alyson has gone in for spinal surgery to address her degenerative disc disease, and is currently in recovery.



Lauren: Thanks for joining us. I'm here today with Alyson Roux. Alyson is a certified nutrition specialist and a health educator with a weight-inclusive practice based in Silver Lake in Los Angeles. Alyson, thanks for joining us.

Alyson: Thank you for having me.

Lauren: So you're on the show – sort of for two reasons today, aren't you? You are both someone who lives with invisible illness, and a practitioner. So maybe we should start with your invisible illnesses. And if you could give us some background on what you've got going on, and how you first realized you had it going on?

Alyson: Sure. I kind of have two stories when it comes to invisible illness. One actually started when I was a teenager. When I was about 15, I started having abdominal pain on my lower right side. I had a temperature, so I think I remember leaving school because the nurse thought I might have appendicitis. My mom came and picked me up and we went to the emergency room, and I had a CAT scan done and they thought they saw inflammation near the appendix. So I ended up getting referred to a gastroenterologist. It wasn't classic appendicitis. It was very confusing. My white blood count was a little high, but not super high. The fever was high, but not super high – very kind of amorphous symptoms. And I started what ended up being a decade-long process of seeing multiple doctors about it, and being diagnosed with IBS.

At one point, they thought maybe I had Crohn's disease.

And when I was 16, they actually did decide to just take my appendix out, so I had an appendectomy. And then I saw a doctor who was an MD, but also had a background in Ayurvedic medicine.

Lauren: That's more like integrative medicine, for people who may not be as familiar with Ayurvedic, right?

Alyson: Ayurvedic medicine is a 1000-year-old medical modality that comes from India. Conventional doctors can go and get further training in Ayurvedic medicine. It’s like a lot of traditional medicines. It involves the concept of balance and the idea of when something is out of balance, trying to gently correct it. Which I have all kinds of opinions about as a clinician. But as a patient, especially a young woman who was really struggling with a lot of pain, it was a very safe place for me because I felt, ‘Okay, this person is trained to listen to me and listen to my pain.’ So I finally felt heard after having multiple, really invasive tests.

Lauren: How old were you when you met with the Ayurvedic doctor?

Alyson: I had just turned 21.

Lauren: Okay, so you'd been sick for about six years?

Alyson: Yes. And I had decided to major in biology and I worked in a pharmacology company; researching a drug in neuro-immunology. And so I got into science and got interested in medicine because I was sick. And I was curious  … could I learn about something that could help myself? (I was also studying theater because I loved theater.) But I was majoring in biology, and I couldn't figure it out. And this doctor just kind of suggested that there was this really rare condition and it was possible I met the criteria for it. It’s called familial Mediterranean fever.

Lauren:  That sounds really fun.

Alyson: Yeah, and he said, it’s genetic and it's usually in certain ethnic populations. I do have a somewhat Mediterranean background. My last name is not Mediterranean; no one ever asked about my background.

Lauren: With familial Mediterranean fever … is that something where you have to have some kind of Mediterranean connection?

Alyson:  When this was originally suggested as a diagnosis, that was the belief, because our understanding of genetics was slightly limited.

It's helpful to remember that we had just completed the Human Genome Project at this time. So we very much thought, especially in the conventional medicine world, that genetics were destiny. And so if you had the genes for something, you were going to get it.

Now we have a slightly different interpretation — a concept of epigenetics and environmental factors, turning genes on and off, like light switches. I was a very determined teenager, and took the concept of my future pretty seriously. And I thought maybe, being over-scheduled, which I completely did to myself …

Lauren: I think all of us ladies have been there.

Alyson: Yeah! While it's very powerful that that stress on my body could have triggered this, it's very common that people have their first signs of symptoms around the mid-teens. But here's the thing that my own bias ended up doing. I listened to this doctor and I thought, ‘Okay, this is great.’ But I wasn't familiar with integrative medicine or holistic medicine, and I kind of didn't believe him. And I took the medicine for a little while — there’s a medication you're supposed to take — and I felt better. I felt significantly better. I went from some days barely able to eat food and having major pain in my abdomen; I would get these fevers and it was almost constant — to really, with the medical medication, feeling much better. But I had such a significant life transition. I graduated from college, I moved, I was working in a job I really loved. So I thought, maybe this has a lot to do with my own responsibility.

I think that cycle of ‘Oh, this is my responsibility to heal myself’ is so common with invisible illness.

Lauren:  And would you say it's possibly more common among women, too?

Alyson: I agree. And as a clinician, I think while it's important for us to help patients acknowledge their responsibility to some end, there's only so much a person can actually do with food and lifestyle. And at a certain point, you have to go, ‘Okay, I've met my responsibilities.’

Lauren: Guys, this is a certified nutrition specialist telling us that sometimes food can only do so much.

Alyson: It can do that! But it also can only really, truly do so much. Anyway, I kind of let this go. And then eventually when I was in graduate school, I started getting really sick again, and I was in a program where you just could not miss class, and I ended up finding a new primary care doctor and we were trying different things. And this is super embarrassing, but I was up till probably three o'clock in the morning doing homework. I don't work at three o'clock in the morning anymore, but at the time I was. I had background TV on, and it was an episode of House.

Lauren: That’s ironic.

Alyson: And the episode featured a character who had familial Mediterranean fever.

Lauren: Stop!

Alyson:  And I was really sick again and I was really struggling …

Lauren: And the symptoms … so it's abdominal pain …

Alyson: You essentially have what's called peritonitis: inflammation of the lining around your organs. This is extremely rare, which is why it was so hard to get it properly diagnosed.

Lauren: And probably why it was also featured on House M.D!

Alyson: Exactly! And you usually get a fever. And with the fever, you can feel very flu-like, like aches and pains. Joint pain is one specific thing. And some people can get pleuritis, which is inflammation of the lining in the thoracic cavity in your lungs. And the reason it needs to be treated is that over time it can potentially lead to kidney issues that are pretty severe.

Lauren: Just kidney, even though it's affecting other organs?

AIyson: It can lead to arthritis in large joints. These super rare genetic diseases don't have a ton of research behind them — though I know I'm very lucky that we have a center that researches the condition here in Los Angeles: UCLA.

Lauren: Did you move to LA before you knew that?

Alyson:  I had no idea. But I saw it on House and I thought, ‘Okay, I should listen to this!’ Because again, even though that episode very much dramatized the condition in a way, there were a lot of things that just spoke to me. So I did mention it to my primary care doctor: ‘You know, I have been diagnosed with this in the past. I didn't really believe it. Is there any way we can see if this is what is wrong with me?' And he basically said, ‘let's trial the medication’. And I felt so much better. For the first time, I started learning about how you can use food to potentially make you feel a little bit better. So I tried some dietary changes, I started taking really much better care of myself.

And it was like coming up from being underwater after a decade-plus.

Lauren: Did your doctor ever call for specific tests to determine whether or not you had this illness?

Alyson: At that time, no. It’s a condition that gets diagnosed sometimes through genetic testing. But it also sometimes is diagnosed based on a collection of symptoms. And the symptoms are so specific and episodic in nature that I met the criteria at that time. Sometimes people even have a rash, and I had the rash and all these different specific things.

Lauren: But the bottom line was that your primary care doctor believed you?

Alyson: Yeah. Which was amazing.

Lauren: It was lucky!

Alyson: But you know, at that point, I had had other doctors put me on antacid medication. I had a doctor suggest an antidepressant medication.

Lauren: That always happens at some stage with invisible illness, doesn't it?

Alyson: It continues to happen. Because I now work in behavioral nutrition, I know there are appropriate screening tools that you can use as a clinician to assess whether or not someone may qualify to have a mood disorder.

And it's so funny to me to think about the many times I've been in a situation where I say I'm in pain, and there's no proper screening tool used about whether or not I have a mood disorder – and then they just offer an SSRI.

Lauren: It’s definitely happened to me.

Alyson: So I went on this medicine and it really helped. However, even when medication helps, there's always a side effect. And the side effect of that medicine, plus the antacid I was on, is that it impairs a certain nutrient absorption – a B12 absorption. And nobody monitored that for years. And then I started having really severe back pain and a lot of numbness in my legs and tingling. And I was still taking the medication as prescribed. I hadn't had an attack in a really long time. So I felt like it was working, so I might as well keep taking it. But I was in so much pain with my back eventually, I couldn't sit down anymore. And so I went to an orthopedist. They referred me to a spine specialist after seeing the MRI, and those working with the spine surgeon and the spine surgeon said probably it would be a good idea for you to be seen by neurologist. And the neurologist was the first person to run a B12 level. It was extremely low. It still is slightly confusing, but it was probably the underlying cause of significant nerve damage that I have in my legs.

Lauren: So how is the B12 specifically related to your nervous system?

Alyson: So B12 … I'll put my my other hat on now…!

Lauren:  Yes, put on your medicinal cap.

Alyson: B12 and other B vitamins essentially work as co-factors, which means that they help enzymes do their job and they help a lot of things do their job that have to do with nervous system function. A classic example is when someone suffers from … I always mess up this word …Wernicke-Korsakoff’s — they're shaking (that is often seen in alcohol use disorder), that is usually related to a B vitamin deficiency, a very specific one. And so the B vitamins in general have a lot to do with nervous system health.

B12 deficiency is common with certain medications. And for some reason, with my system, these medications I was on were really depleting them, and it ended up causing neuropathy.

So I have peripheral neuropathy in my legs, possibly related to these medications. So that was a really interesting experience because the thing that was helping me was also possibly causing a problem. And then with my back, I ended up having degenerative disc disease. The underlying cause of that is still a big question mark.

Lauren: Whether it was related to this medication or not?

Alyson: I don't think that would be ever related to the medication, actually. I used to be extremely active; I may have injured myself, dancing or something like that.

Lauren: Something minor that you may not have noticed.

Alyson: Yeah. And then when you get a desk job and you're sitting, you lose core strength, and then a disc injury can become more apparent. Also, there are some people who are born with what's called a narrow spinal canal; then you can have stenosis. And if you have a disc that becomes damaged, then it has more potential for harm. Which just may be the case with my anatomy. I can't, you know, elimination-diet myself out of having a narrow spinal canal!

Lauren: Right. But is that something that may have been genetic as well?

Alyson: Possible …yeah.

Lauren: But on a certain level, it doesn't matter. Because the point is that you have it, and you're living with it. So the next step is to figure out how to get better, right?

Alyson: Exactly.

Lauren: Instead of, where did it come from? Because we know you have it, right?

Alyson: Yeah. And I ended up having to go on disability from work, because I couldn't sit down, I couldn't stand still. And I had a lot of epidurals and then eventually ended up having surgery on my low back. And now I am starting to have the same problem in my neck. And it's impacting my arms and my hands. And now that this is the second round of dealing with this, I actually feel much more at peace with it. The first time, it was so life-altering, I ended up changing my career because I couldn't work in my old job anymore. And I ended up going back to school because of it so I could create a life where I could work and make income and be able to take care of my body. So I'm not gonna have to reinvent my life this round, which is great. But it's definitely something that I continue to face every day. And having chronic pain is tricky. So I guess it's why I said there are kind of two invisible illnesses. I have this auto-inflammatory condition, this familial Mediterranean fever — which, at this point, probably 12 doctors have officially diagnosed me with. And I still …

Lauren: You still don't want to believe it! Because it just is so invisible, right? Because it's sort of, like, there's no reason that I'm having these symptoms. And, you're having all the symptoms. But being able to go, that's the name for it, and get your head around it? Is that what you mean? You still don't want to believe it in that way?

Alyson: Yeah, and I think as you've probably experienced...

...when for years, people just said, ‘Oh, there's nothing really that wrong with you,' you start believing that narrative.

Or if people convince you, just have the mental fortitude to get past the fact that you have a fever and abdominal pain.

Lauren: I know my period feels different than this!

Alyson: Exactly! So, I think, changing that narrative and being accepting — but also still taking a reasonable amount of responsibility for your health and not becoming hyper-vigilant – is so key.

Lauren: And that's a key thing, as you're saying — taking responsibility for your health. Not necessarily taking responsibility for the symptoms you're having, and blaming yourself for having something going on. But actually taking responsibility for finding a way to heal.

Alyson: Yes. And sometimes that responsibility to find a way to heal actually means finding: these foods do make me feel better, these foods might not make me feel as well. And learning how to have a healthy relationship with food. In that regard, I definitely tried all the things to heal myself. And sometimes, it was very functional and normal. And sometimes, some of these therapeutic diets that I would try would put me in a headspace where I would be at the grocery store and staring at a wall of yogurt and feeling totally overwhelmed, thinking, ‘I just want to eat some yogurt.’ And I don't know if I can buy this yogurt, or this yogurt. And so when that healing choice that we've made is promoting hyper-vigilance, we have to take a step back and make sure: is this potential restriction or a choice that I've made to support my health worth it or not? I can also say … I do have acid reflux, I've had acid reflux for a long time, and I'm going to have it probably for the rest of my life … at this point, it’s well managed with all the tools that I've learned in my nutrition training. But I have to honor my health and really limit my raw red onion, for example. And onions are a very healthy food; they actually help feed gut bacteria. There are all these things that they do that are very helpful, but they’re just not good for my personal body. They make me feel uncomfortable.

Lauren: And that's bottom line, isn't it? Being able to listen to your body as well.

Alyson: Exactly.

Lauren: And so you mentioned that you were in one career, and changed to another. So you were pursuing a career in the theater?

Alyson: Well, I was a director in theater, and I went and got my MFA in directing. And I actually fell in love with filmmaking when that was happening. And I realized that I wanted to explore working in the TV and film industry. And so I was very fortunate to come to Los Angeles after the first time I went to graduate school, and I worked at a film studio. The hours were very long and the behaviors, in terms of how a lot of people took care of themselves, now I can look back and make the clinical observation — it was quite disordered. I just remember the bags of meal delivery, outside of executives’ offices.

Lauren: It’s just survival, isn't it? It's not thriving, it’s surviving.

Alyson: Absolutely. And even on the executive side of things, there's so much shame around body image, and image in general. At this particular studio, I recall people spending so much time in the bathroom.

Lauren: Like a whole break in the bathroom kind of thing?

Alyson: Having to go to the bathroom!

Lauren: Oh, so not just people sitting there on their phones!

Alyson: No, like in the stalls!

Lauren: So people were sick. You can talk about poop. We talk about poop on this show!

Alyson: I love talking about poop! It’s pretty much what I do all day long. Because it's such a great barometer for you to determine ‘how am I doing, am I helping my body feel good?’ And everybody's optimal bathroom situation is unique and different, and being more comfortable with knowing what yours is, and making peace with that, is important.

Lauren: I'll just insert an anecdote here, which is that I probably was not okay with talking about poop until I worked with you. It's like a really good indication of what's going on.

Alyson: (laughs) It really is!

Lauren: (laughs) If you have violent diarrhea, something's off.

Alyson: And if you have a really hard time producing a bowel movement, that is a sign there is some opportunity to explore, you know, what's going on. And so often, it can be as simple as, are you drinking enough water? A lot of times, it's a signifier of how you're managing your stress, and that's normal. And then when I had all the back problems, I realized that I wanted to go back to the drawing board and really think about what excited me about working as a director in the first place. And I realized that I really fundamentally loved stories, and I love listening and hearing people's stories. And I really loved helping people be good at their jobs. And food and science. So I felt like, okay …

Lauren: … the natural progression.

Alyson: Yeah, it seemed to combine all the training that I had, and to be able to get quality training in nutrition.

Lauren: So that was your second graduate degree!

Alyson: That’s correct.

Lauren: And that's been the trajectory that you've stayed on. And now you're working in private practice, but also on a consulting basis as well with other companies, right?

Alyson: Yes. And I teach at AMDA College [and Conservatory of the Performing Arts]. I teach health education.

Lauren: Wow, that's interesting. So they're offering health education at drama school?

Alyson:  Exactly. And I think if, when I have the time, and if I ever have the money, I would love to really promote the importance of health education in the performing arts, in conservatory programs. Because as you probably have also experienced, I saw a lot of negative health behaviors. I developed some real bad habits. And all of that is preventable. I'm not saying people need to be eating in any kind of way that promotes perfectionism. But it's pure and simple — emphasizing self-compassion with health behavior, not treating one's body like crap.

Lauren: Which we really do. Having been through drama school myself, I can attest to the fact that I wasn't eating well when I was there. I was working too hard. I mean, you have the college experience, where you're overloading, but you are just surviving. And it's very hard to stay on top of say, making a salad instead of just grabbing that sandwich or whatever is going to be something that's good for your body. And then trying to combine it with exercise. In the meantime, you've got  … particularly women, but certainly women and men in these programs … who are so worried about what their bodies look like, and reflecting negatively on themselves. It makes a lot of sense to be able to provide that kind of counseling to people in those situations.

Alyson: Absolutely. And I think if you have faculty encouraging weight loss …

Lauren:  Which is a problem. I mean, [performing arts schools] all do.

Alyson:  I don't know of a program where that probably doesn't happen. And you have an ethical responsibility to provide support.

Lauren: Which is great that AMDA is doing that. So, kudos to them.

Alyson: Yeah, it's fantastic. And I think when you learn about one's body and health, part of it is also learning about how to be a critical thinker when it comes to where your health information is coming from. Are you getting your health information from your friend that did a cleanse from this company that, you know, who knows?

Lauren: It’s really like: is it fake news?

Alyson: Exactly.

There's so much fake news in the wellness world. And we know that it can be so harm-inducing.

And so one thing that I've tried to do with the students is help them learn how to be more discerning. And also, just pure and simple, teach people how to get health insurance and how health insurance works. I think that is also really helpful. And how to find a doctor.

Lauren: Yeah, I wish we were taught those things in college in general. Because it's interesting, we always look back at the training that we had in school and in college, and any math class you took was more about making a graph than being able to balance your bank account or your checkbook. Those practical skills may have been more useful, because some people don't get those skills at home, necessarily. So being able to provide those resources to people is huge.

Alyson: It comes back actually, to the very core concept, also, of consent. We think about consent in terms of sexual consent. But for an artist in training, especially a performer in training, the boundaries of consent get extremely blurry.

Lauren:  You're actually trained not to have boundaries.

Alyson: Yes, and so when that happens day in, day out, and you're working on being as vulnerable as possible, and you’re praised for your vulnerability, there is, I believe, an ethical responsibility to make sure that one's mental health is being taken care of. And one’s physical body is being taken care of. I can remember being in a movement class where we did a movement exercise, and … I am a fairly emotionally and even-keeled person … and the physical work that we were doing felt so invasive to me that I had to leave the room. And that was something that I think was probably stored in my body. This is actually interesting for people to know about. There are licensed mental health practitioners, MFTs or psychologists, who actually use gesture and movement-type somatic therapies around trauma.

Lauren: Well, EMDR and tapping.

Alyson: EMDR and tapping. There’s also somatic psychotherapy. And those forms of therapy in the right hands can provide immense relief and freedom from trauma. And I don't think that movement instructors realize, again, the potential for triggering that some of these exercises can do. I have witnessed that with other colleagues when I was in certain movement classes – certain things feeling really triggering.

Lauren: So, whether or not you have degenerative disc disease, or some actual kind of physical problem going on, you're storing memories or psychological pain.

Alyson:  Exactly. It comes back to the invisible illness question, because we have no idea what somebody is experiencing.

Lauren: And sometimes they don't either.

Alyson: And they don't either. And when you have people leading movement exercises that maybe haven't had multiple years of psychological training …

Lauren: They tend not to go hand in hand, do they! One thing is psychology. And the other thing is movement. And they’re very separate.

Alyson: Yeah, but they are so intertwined.

Lauren: They’re so intertwined. And certain theories of movement … When you go into performing arts training — I'm thinking specifically of what I went through with Laban and that's hugely tied into psychological gesture. And that's a huge part of acting training for a lot of people. So to have the training in both psychology and movement if you're teaching psychological gesture makes a lot of sense.

Alyson: Absolutely.

Lauren: And it's all part of the compassion that we're talking about, people being able to create a bubble of compassion around themselves and being able to give themselves compassion. Which is not only part of being invisibly ill, it's part of being human. And it's something that, particularly in this world where we're moving really, really fast all the time, we kind of forget, don't we?

Alyson: Absolutely. And we have to have boundaries when it comes to our health. And when we're working with other clinicians who might say things or do things that aren't helpful. I can now transition to talking about one of the most important things, which is, I think, the act of being weighed in a medical office.

Lauren: This is a huge one and very triggering for a lot of people.

Alyson: Yeah, and there is a lot of literature talking about and demonstrating the harmful effects of weight-informed medical practice. And when weight-neutral or weight-inclusive practices are explored, you see people having more access to care and feeling more heard and actually getting the care they need. I feel I do have a privilege that my body is a size that is not large. And I acknowledge that privilege, and I think a lot about that. I have been heard by medical professionals, possibly because of that.

Day in, day out with my own clients, I see people who have not been heard. And it makes me really angry and also makes me want to change how this works. And I've also had moments where a physician has said something to me about my body size that really was completely uncalled for.

Lauren: Because what’s uncalled for is prescribing an SSRI when someone's experiencing a physical symptom, isn't it?

Alyson: Absolutely. Instead of just screening for depression or anxiety, which would be the appropriate thing to do. Because of my neuropathy, I have a lot of foot issues, and I was having a problem with my big toe, and I saw a podiatrist who made me get an MRI. It was really just a nail problem; I don't know why I had to get an MRI. And looking at the MRI, he then gave me, I think, four diagnoses for my foot.

Lauren: Like, it's just my nail!

Alyson: Yes, this is just a nail issue!

Lauren: And you're in touch enough with your body to be able to also isolate that sensation, aren’t you?

Alyson: Yes and no; it's tricky. I'm in touch. I definitely listen as much as I can to my body. But I have neuropathy. So sometimes, sensation-wise, I get a lot of question marks with my feet. And I do have limited mobility because of my back. I can't go for a run. I can't go for a jog. I can't go to a yoga class. There's only specific exercises that are very safe for me to do. And it's taken a lot of work to figure out what is safe. What feels safe. You can't go to parties anymore. And he said, ‘No yoga, no dance. You can do pool exercises’. And he's like, ‘You should take vitamin B.’ Which is not a thing, for the record. There's no vitamin B, there are multiples.

Lauren: He sounds great!!

Alyson: And he said, ‘You really should think about losing 10 to 15 pounds to take pressure off your feet.’ This doctor had never seen me stand up. This doctor had never seen me without a winter coat on. This doctor had never weighed me.

Lauren: And was male.

Alyson:  And was male.

Lauren: Whether or not that was part of it.

Alyson: Yeah. And I acknowledge that I have the privilege to have a brain and a heart and spirit that can hear that and get angry about it — and not have it completely derail my food and my behavior.

Lauren: So that's a really important thing to pause and highlight here because I think a lot of people would find themselves in that situation and go, ‘Oh well, what the doctor says is … Doctor is God.’ And that's not necessarily always the case. And you were smart enough to realize that this was not the doctor for you, I'm guessing. But sometimes you need to go and see someone else. Sometimes you need a second opinion. Because just because one person says something, doesn't mean that's the end-all, be-all.

Alyson: Completely agree.

And at any point during your care if you feel uncomfortable, or if you feel like someone's not truly listening to you, you have the option of saying that to that provider. As a provider, I hope people tell me that if I ever do something that is unhelpful, or makes them feel shame, or makes them feel not heard.

And I tried to express that to this doctor. It didn't work. The medical assistant apologized after the doctor left the room.

Lauren: And the medical assistant — male or female?

Alyson: Female. Of course.

Lauren: I’m asking these questions because to me, it all follows.

Alyson: Yeah. So that happened to me. And then I kept hearing stories like this from my own clients.

And I realized that it was time for me to take up the responsibility of getting more vocal about the Health at Every Size approach and weight-inclusive practice.

And if there's a way that we can some day hopefully develop not just physician education, but dietitian and nutrition and acupuncturist and chiropractor education that helps them understand when you say something like that to somebody, it can be very damaging. And it also shows your bias. And anytime there is a bias that a clinician is not exploring or acknowledging, there is a potential for harm; there is a potential for something to be missed.

Lauren: And you're not looking at the whole person when you're making judgments like that.

Alyson: Absolutely.

Lauren: And it's also an opportunity for the patient to understand what their boundaries are. So that if someone oversteps a boundary for them, that they're able to say, ‘No, thank you.’ So you're talking about being an advocate for others. Did you ever find in your experience, living with invisible illness, that you had to seek an advocate? Or were there friends or family who came to your aid, whose relationships to you sort of changed – or were enhanced – because of your being ill?

Alyson: When I was younger, I was lucky to have parents that were an advocate for me. I'm very grateful for that. As an adult, I sometimes go into certain appointments, and I will intentionally request that my partner come with me.

Lauren: And that's not unusual. I think that's important for listeners to know, it's not unusual to ask for someone to come with you. And I've had my mother, who grew up in the ‘60s and ‘70s, telling me that back then, a woman wouldn't have been allowed to bring a partner or a parent into an appointment. But now you can. She comes with me to all my appointments, too. It's interesting. You are allowed to bring someone with you, is the point.

Alyson: Yeah, and there is an energy shift, I think, in the room when you bring somebody with you. I encourage – and I say this to my students and to my clients – bring a notepad.

Lauren: I'm writing that down!

Alyson: I often say, don’t rely on your phone. They think you're doing something else on your phone! Bring a notepad, have a pen or pencil. Go in with your questions. And every time the question gets answered, write down the answer or cross the question off so that you know you've addressed it. It gives you a visceral touchstone in the appointment, especially if there's a kind of heightened emotion around what's going on. Make sure that you have an agenda that is reasonable and grounded. That way, if you get information, you can write down what the person is saying.

Lauren: And I think having an agenda that's reasonable and grounded, it's also giving yourself enough credit and compassion to know that your agenda probably is reasonable and grounded — if you're having a problem and you're trying to seek help.

Alyson: Yes, absolutely.

Lauren: We're talking about listening to patients and being listened to … What is the occurrence of hypochondria in your practice? Does that ever come up when you're dealing with patients? And how do you sort of balance that in the work that you do?

Alyson: Oh man, that is such a good question.

Lauren: It’s a big one, I know.

Alyson: It’s really hard to answer.

Lauren: Because, hypochondria, if it starts in the mind, that's the symptom, right? It's something in the mind.

Alyson: I don't know. I think sometimes it's very much in the mind, but it's also so often in the body. Because I do work a lot with gastrointestinal disorders and eating disorders, there’s a lot of literature on the vagus nerve, which is one of the cranial nerves. And depending on how the vagus nerve is being stimulated, it can really impact someone's mood, someone's motility, their frequency of bowel movements. And certain activities, certain things, can trigger that vagus nerve to make one possibly feel more anxious. I hate the word psychosomatic. Because I do believe that there is probably a physical underlying explanation.

Lauren:  Well, and because the mind-body connection exists.

Alyson: Yeah. I've worked in a medical practice, and I've worked in private practice. And in all of my work, I have probably only encountered one person where I think that they were full-on making up what they were saying.

Lauren: And you're speaking from years of experience here, so that's really notable. The likelihood, if you have a doctor (and this is for our listeners to take in) … if you have a doctor telling you it's all in your head, but you really feel like there's something going on – go get another opinion.

 Alyson: Absolutely, get another opinion. At the same time, try to listen to what each doctor says.

Lauren: And if it’s the same thing over and over, maybe that's a pattern, too.

Alyson: Yeah, and I think someone saying it's all in your head is the worst thing you can say …

Lauren: It’s a horrible thing.

Alyson: Because it actually might be all in your gut-brain. Which can promote anxiety and it can promote bloating and physical feeling and pain, and tension and cognitive difficulty. There are so many things that have an underlying root cause that are not going to be found on a test.

Lauren: Such as familial Mediterranean fever!

Alyson: I never finished that story! I actually went off the medicine, which you're not supposed to do. And I did end up having two pretty severe attacks, one ending up in the hospital — I had to go the emergency room. But fortunately, I went to a hospital in Glendale where there is a large Armenian population. And that is one of the populations that has a high frequency of Mediterranean fever. And they knew exactly what it was.

Lauren: Oh, that was really lucky!

Alyson:  And the reason I wanted to bring that up is because for the first time in all my life of having ER visits because of this weird, crazy thing, they were like, ‘We know what that is. Here are drugs!’

Lauren: Oh, so amazing! That was so easy!!  I feel like you had it really good!!

Alyson:  Well, I mean, it took …

Lauren: …It took a few years!!

Alyson: It took 10-plus years to finally get it really, truly properly diagnosed.

And it's still an everyday struggle of, like, ‘Can I say that I'm going to that friend's party?’ Because I don't know how I'm going to feel. ‘Can I actually make sure I can schedule clients during this time?’ Because I don't know how that day is going to go.

Lauren: But you’re managing to hold down a very full-time career, and you've made your work, work around you.

Alyson: To the best of my ability. I always wish I could do more.

Lauren: But that's also the wanting to help people factor, isn't it.

Alyson: Yeah, I think so.

Lauren: And that's where you're an advocate. And people are lucky if they are able to work with you, to have someone who is looking at a broad picture of who they are, and listening to them.

Alyson: Yeah, absolutely.

Lauren:  So, we're talking about lots of different kinds of invisible illness, and you're dealing with eating disorders — which, in my mind, also is in that spectrum. And I know that you are working more specifically in the world of nutrition. But is there a particular illness that you find comes across your desk more often than others?

Alyson: I think there is a lot of poorly-managed irritable bowel syndrome. And especially when there is irritable bowel syndrome plus a history of possibly disordered eating or an eating disorder, that is a very kind of red flag territory. Because we have evidence-based dietary approaches to working with irritable bowel syndrome. But if you have a history of a difficult relationship with food, you have to be very cautious about how you include a therapeutic diet. And so, if you start experimenting with that diet, it's really important that if you have IBS and a history of even disordered eating, kind of borderline eating disorder — and especially if you have an eating disorder history — it's really important that if you want to work on treating your IBS, you work with a dietitian or a certified nutrition specialist who has training in eating behavior. And that it's a supervised process. Right now, there’s a lot of self-treating …

Lauren: And reading about diets online. We were talking about this right before we started recording. People look at something like AIP, for example — the Auto-Immune Protocol — and a lot of people who are behind the AIP movements are purely Paleo and maybe don't have training in nutrition, or science for that matter. So how do you help people who are looking at that, and they might have a disordered way of eating, but they need to find something that works for them? Is it elimination diet territory … and that's something where they should be working with a professional?

Alyson: I really fundamentally believe that if you're going to be exploring an elimination diet, where you're eliminating entire food groups, it is wise to do it with a professional. And really important to make sure that your mental health and relationship to food is being monitored during that time. And that it is absolutely medically necessary.

We have literature showing that restriction promotes disordered behavior around food.

There is a study — and I'm going to try to do it justice in describing it — where they took two groups of children. With one group, they put food in front of them; the foods were very specific colors, and they said, ‘Eat as much as you want.’ And the other group, they said, ‘Okay, you can eat as much as you want. But you cannot eat red food, no red food for you.’ The two groups ended up eating about the same amount of food. Kids are really good intuitive eaters, for the most part. Then they sat them down again, with the same food, and said, ‘Okay, now you can eat as much as you want. And if you want a red food, go ahead, eat the red food.’ And those kids that had been told to not eat the red food before ended up eating more of the red food. This is just restricting color …

Lauren: So imagine when it's sugar or something that we have an actual addiction to?

Alyson: Well, I could talk about deconstructing the concept of food addiction! That might be time for another day! But yeah, restriction is a very powerful thing. And it can potentially be harmful. And so any time that someone finds ‘this food doesn't agree with me,’ I always encourage them to think, ‘Are you making that choice because you’re worried about your body size, or because of how it makes you feel? And in your calendar, in three months, put a note to try the food again.’ Unless there's a full-on allergy, which is different.

Lauren: You can also do testing for allergies and sensitivities and things like that?

Alyson:  Absolutely. You can get full-on allergy testing from an allergist. So it's really important that we know the self-compassionate choice is to always advocate for as diverse a diet as possible. And that's going to look different for different people at different points in your life. When I was in college and I was getting diagnosed with IBS and all these different things, when it was the familial Mediterranean fever, I remember seeing a dietitian and they told me to stop eating dairy. So I spent all of college eating the crust of pizza.

Lauren: Oh my God … which is probably just as bad!

Alyson: It didn't help my symptoms at all. And I remember she had recommended I eat soy yogurt.

Lauren: And then you're dealing with lots of soy!

Alyson: Yeah, and it's really hard to digest for some people. It was for me. And it was also just really gross! I really tried to restrict dairy for a really long time, and I recently just tried to reincorporate it — and it makes me feel great.

Lauren: Oh, that's amazing.

Alyson: There's certainly a threshold that is too much for me. But again, I just want to go back to acknowledging that I have the privilege that my mind around food is, for the most part, not disordered. And the literature shows that is definitely not always the case with a lot of people. And so we have to be able to determine: If I try this intervention with food, is it going to make me hyper-vigilant? Is it going to make me not be able to be social with my friends? Do I need social time, as somebody with an invisible illness, more so than making sure I'm restricting this food that may or may not actually help me feel better? So much of this restriction messaging that's coming through integrative, functional, “holistic practitioners” … I will just make the observation that is often a man, a white male voice ..

Lauren: Well, how surprising!

Alyson:  And it is often a white male voice that also encourages potentially over-exercising and weight loss. And that is a lens through which … I just don't think it’s safe and inclusive.

Lauren: How do you think you developed such an inclusive lens? How do you think you somehow escaped disordered thinking in that way? Is it because of your training and being able to see the science behind everything?

Alyson: I think we all have our disordered thinking about something.

Lauren: That’s very true.

Alyson: And I think I've taken the time to figure out where mine lies, and I've done a lot of work on that. Way back when I was first starting (I was actually just talking about this with a dietitian this morning), I recall working with someone, and I did as I was trained … I put them on an elimination diet, because they were experiencing fatigue and IBS and all these things. And they didn't lose weight. But they felt so much better. They got through their workday better, they had more energy, they were sleeping better. They were going to the bathroom very comfortably, all those things. And they requested that I weigh them to decide whether or not they were successful in our work together. And I tried to resist. This was when I was a baby nutritionist. And I just totally capitulated and weighed them, and they’d lost like two pounds, and that was not …

Lauren: … and they felt like a failure.

Alyson: They felt like a failure. And at that moment, with everything I was already intuiting, I realized: okay, if somebody's already struggling with an invisible illness, why would I ever do this to them? Why would I ever profit from their shame? And I never, ever let that happen again.

Lauren: Yeah, amazing. It's interesting … I'm thinking, I've got a scale in my bathroom, but I’ve never used it. It’s got a hamper sitting on top of it. It’s time to just throw it out.

Alyson: Throw it away!

Lauren: It’s probably broken anyway! (Laughs) But it is really interesting. I don't know how many of us have moved and thought, oh, must get a scale to have in the bathroom. That's the way we've been taught, with low-fat diets and the way the American system and the FDA and the AMA have told us. But actually, maybe it's time to buck the trend.

Alyson: And there are so many other ways we can attune to our body's needs. And it's heartbreaking to see, when I start working with somebody new who has been given really harmful advice by another practitioner or doctor or clinician, and we kind of have to undo diet culture.

Lauren: That’s huge. And it's not just a personal thing. It’s everything around you, too. So it’s undoing your personal feelings about it. But also the lens through which you are seeing billboards and, you know, different advertisements in magazines, and things like that. Yeah, that's huge. Obviously, we're talking about living in this country, the systems within which we live, obviously negatively affect people. What are your thoughts about the U.S. healthcare system?

Alyson: Oh, my goodness!

Lauren: I know I'm opening up a can of worms here! With regard to the way in which it works very generally, but more specifically, work-life balance … You've been on disability. So you and I both understand how that works. But how often are people ending up with it because the system is not working for them?   And even something like disability insurance … is that a consequence of our current healthcare crisis? How would you frame your thoughts about what’s sort of going on right now — health care for all, versus private health insurance and all of the stuff that's floating around here?

Alyson: Well, we are very lucky that we live in the state of California, because the way State short-term disability insurance works here is extremely more beneficial for the patient than most other states. So I know, had I not been working in California when I had to go on disability, I would have really struggled. Without going too much into the battle that I had then with a short-term disability, private company … that was a very dehumanizing process, I was not quite “sick enough” to get the benefits in the timeframe that they decided. So private industry disability insurance is very different from a state disability public program, and the one in California is actually, compared to other states, from what I know, and I'm not an expert in this area, quite generous here. It’s still not perfect; you have to work for a certain amount of time to even qualify for it. So especially in LA, we have so many people who don't work enough to qualify for it …

Lauren: A lot of freelancers, yeah …

Alyson: Yeah. So that's where it really doesn't help people. And then with short-term disability, you have to meet certain categories that their staff physicians decide would be appropriate to reimburse for. And I personally experienced that what my physician thought was not what their physicians thought. That also happens, in terms of a separate conversation about health insurance, because first for a procedure or test to get approved through your health insurance, it has to be medically necessary. And I think most of us who struggle with chronic illness realize that that approval is actually not up to our doctors, it’s up to a physician that works for a health insurance company, potentially. And I'm right now in a waiting game waiting for a certain procedure to get approved. 

Lauren: You and I both.

Alyson: It's making me not be able to work as much while I'm waiting for that. So I'm not able to contribute to our economy. And potentially that waiting game then could promote other health issues. So that to me doesn't make very much sense. And the amount of money that I personally have to spend on health insurance, just the premium and then my co-pays and my deductible, are exorbitant. I don't get to go on trips.

You really become so limited on how you're able to spend your money and your time when you have chronic illness. You have to be so deliberate. It causes you to be deliberate with every minute of your day. In a way, that is exhausting. 

Lauren: And in a way that a lot of people don't always understand, particularly not health insurance companies.

Alyson: Yeah. Or employers potentially, which is also why I primarily work for myself.

Lauren: Absolutely. And that’s, I guess, a tip for people who are struggling with a chronic illness who may be listening in … find a way to make your work, work for you – instead of working for your work.

Alyson: Yeah!  I don't know where this quote came from. I saw it recently in social media, and I could not stop laughing. It’s: Do what you love, and you will end up having to work all the time!

Lauren: (laughs). Yes, I’ve seen that one too!

Alyson: (laughs) That’s pretty much it!

Lauren: And also because if you're emotionally involved in your commitment to your work, because you really do care about it, that care doesn't ever switch off, does it?

Alyson: Exactly. Yeah. And I think actually for those in the health professions, now you can do more training in what's called ‘compassion fatigue’, so that you can develop healthier boundaries.

Lauren: I love that there's a name for it. And you don't have to be working in the healthcare industry to have compassion fatigue. You could be like me, and just be too nice! (Laughs).

We've talked a lot about so many things today. And I like to end on a lighter note. The top three lists! And you're coming at it from both sides of the spectrum here, as a patient and as a practitioner. So I'm very interested to hear what you have to say about this. But, what would be your top three tips for someone who suspects they might be dealing with some kind of invisible illness and is looking for help?

Alyson: Find a physician, whether it’s primary care or a specialist. Or a physical therapist, potentially even. Find a clinician who listens to you, who every time they send you to someone for a referral, that's a helpful referral. I have a doctor that I trust, if it’s not my primary care doctor …

Lauren: Is he a neurologist? Because you actually sent me to him at one point and he was amazing. I was actually recommending him to someone the other day!

Alyson: Yeah, he's fantastic. And every single recommendation ever made has been extremely helpful. He's extremely smart and thorough. And also, when he doesn't know the answer, he says, ‘I don't know the answer. I need to spend more time on this.' And he actually talks to my other doctors. So even if I go to another doctor who does not potentially appear as thorough, whether they are not … sometimes you really can't tell … I very much feel like I'm in good hands with that physician.

Little things, like at the office, if you don't want to be weighed, and you say, ‘I don't want to be weighed,’ they should listen to you. I've said that at a physician's office, and the medical assistant said, ‘You have to. It has to be in the chart.’

I actually got this advice from another nutrition professional, who's even more senior in terms of their experience, and they said, ‘Say: Patient politely refuses to be weighed; put it in my chart.’

So those are my two big ones around dealing with the clinician’s office. Have the boundary around whether or not you want to be weighed — because you're already in pain; you don't need to add more trauma, of making it about your body size. And then find a clinician or some kind of person who can really work with you and does listen to you. I think it's really important that you do have a care team that is talking to each other, if there's any way to encourage that. The other small kind of subset advice: Just because you got referred to a physical therapist does not mean that that's the right physical therapist for you.

Lauren: Yep. I’m nodding a lot while I’m talking to Alyson today. I’m doing some big nods right now!! (Laughs)

Alyson:  (laughs) It’s really important that you find physical therapists, occupational therapists, whoever it is you end up working with, on that piece — that person you're going to see a lot. And they need to be really a good fit for you. I am so grateful that I that I have the one that I have. She has kept me mobile. She has helped me make discoveries that I never would have been able to figure out on my own, or with a different type of physical therapist. So I think that's really important.

Lauren:  I think those are really awesome tips. And then … my other top three list, and this is one of my personal favorites … Obviously, you've done a lot of dietary changes over the years, and you focus a lot on nutrition in what you do for work. It doesn't even need to be nutrition-related, because I know even when you and I have worked together, you suggested things like meditation to me.  What would be your top three, either/or here, secret indulgence behaviors for someone living with chronic illness, for your particular case – or comfort activities? Because I think sometimes they go hand in hand. Just sort of indulgence activities that make you feel good. What are your top three?

Alyson: Time in nature, I think, is really important. And time in nature that is accessible for your body.

Lauren: Well, you’ve got Griffith Park, right here.

Alyson: Yeah. And I love it. I love being there; I'll take my dog. There are definitely days where my fatigue is pretty intense, and that's not going to be a good fit. So figuring out how you can get outside in a way that meets your mobility needs. And I encourage also, making that time when you feel like it, social … might be nourishing. So I think time in nature is really important. That is crucial. It's a big reason I live in Los Angeles and not in Massachusetts anymore.

Lauren: But isn’t that interesting because people don't think of LA as a place that has nourishing outdoor activities, but actually it really does.

Alyson: It does, we're so lucky! You know, technically you can go out to Joshua Tree for the day and come back.

Lauren: If you don't have too much fatigue, because the drive is a few hours! (Laughs)

Alyson: Yes, it’s like two hours!

Lauren: But you could have a friend drive you!

Alyson: So I think that's really, really helpful. And … I once did one of those float tanks.

Lauren: Oh my God, what are they like?

Alyson: I will disclose that I'm extremely claustrophobic. And I was totally fine. It wasn't one of the pod ones; It was a room one. And the water is full of Epsom salts. So you actually do float, and it was very relaxing. If you do have a meditation practice, you can meditate while you're in there. You just hang out. That was incredible. So that felt really good. So finding something like that …

Lauren: … That’s a sensory deprivation thing?

Alyson: Yeah, I think it's really crucial that you prioritize. Whether it’s bodywork, or a float tank. I have also incorporated Feldenkrais.

Lauren: What is Feldenkrais?

Alyson: It’s like Alexander Technique. It’s an autonomic nervous system movement integration technique. So whatever is the thing that works for your body. Because it doesn't work for everybody. I imagine there are people who are going to think a float tank sounds horrible. Whatever the thing is … you’ve got to prioritize it. Put in your calendar. Be your own assistant. Prioritize that time. That is absolutely crucial.

Oh, and have a pet!

Lauren: You know, it's funny. I've actually said to people, because I honestly think (particularly with dogs), if you're someone who tends toward depression, having an animal that wakes you up in the morning with ‘Best day ever!’ is the best. But also there are so many studies that have proven that just petting a cat or a dog can majorly reduce anxiety and promote comfort in general.

Alyson: Yeah, and you know when I did not feel like I had the ability to have a dog — when I was really in the thick of recovering from the first major spine surgery — we had a fish! And I’d hang out with the fish! So you can find a good fit at varying levels of what is going to work for your body, pet-wise. I made sure to get a smaller dog when I did get a dog, so that I can handle her; I probably couldn't handle a larger dog. And I think that dog has probably been one of the most healing things in my life.

Lauren: Yeah. And you also have a partner, so that probably helps with taking care of the dog. For me, I'm single and a cat is right on. Some days I couldn’t get up to take a dog for a walk, so having a cat who shows up and taps me on the face … you know, it can be really great.

Well Alyson, thank you so much! If anyone wants to be able to find you, they can find you on AlysonRoux.com. And thanks so much for being on the show today and sharing your experience.

Alyson: Thank you for doing this.


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