Melissa Talwar was diagnosed with fibromyalgia at the age of 14. 20+ years later, living in chronic pain and regularly becoming bed-bound, she watched her symptoms stabilize and her decline subside at her discovery of biohacking and functional medicine. Not long after, she went on to establish the International Support Fibromyalgia Network, a non-profit patient-led organization created to fulfill the unmet needs of the fibromyalgia community. #SupportFibro believes in collaboration. It is open, participatory and dedicated to educating, advocating and inspiring the fibromyalgia community. Melissa is also a Board Certified Functional Medicine Health Coach, Certified Wahls Protocol® Health Professional, and ReCODE coach (Bredesen Protocol). She cites among her heroes Dr. Terry Wahls, Dave Asprey, and Dr. Dale Bredesen. She and Lauren connected at HLTH 2019, where she was also in attendance as an honoree at the WEGO Health Awards. Melissa was awarded with the honor for Healthcare Collaborator: Patient.
Key links mentioned in this episode:
Tune in as Melissa shares…
- that her chronic pain journey started with a sports injury, when she was an Olympic hopeful for CA in the 800m
- that she suffered a concussion and couldn’t even walk up stairs when her chronic pain began — and she was eventually in a wheelchair
- that fibromyalgia had rarely been seen in juveniles when she was first diagnosed as a teen in the ‘90s
- that fibromyalgia itself is far from rare, and its incidence has increased over the years
- that she was placed on numerous anti-psychotics and other drugs, which caused terrible side effects
- that in 2016, still in a state of physical decline (and about to invest in an electric wheelchair), she heard about Dave Asprey and began exploring his approaches, Dr. Terry Wahls’ writing, Dr. Dale Bredesen and his book The End of Alzheimer’s, and functional medicine — and finally began to see a positive change in her health
- that she gathered past labs, studied her inflammation levels, and began to design and implement a 36-variable protocol that gave her back her life
- that mental health has been a big component in her healing
- how she plans to continue the growth of the Support Fibromyalgia Network — through patient education initiatives that empower them to reclaim their health
- that she combats depression by keeping her mind focused and busy — and learning new skills
- that fibromyalgia isn’t currently classified as an autoimmune disease
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Lauren: All right guys, thank you so much for joining us. We are recording again here at HLTH 2019 in Las Vegas … I am joined by the wonderful Melissa Talwar. Melissa is the executive director of the International Support Fibromyalgia network. She’s also a board certified functional medicine coach, and we’re here together because she also won a WEGO Health Award! Melissa, thank you so much for joining us today.
Melissa: Thank you for having me.
Lauren: It’s such a pleasure. We like to start these interviews from the very top, and this is exciting for me, because I haven’t heard some of your story yet. Can you tell us when and how you first realized you had an invisible condition, and when you were diagnosed with fibromyalgia?
Melissa: It’s interesting because I was 14 years old; this was in 1994. So I didn’t even know there was such a thing as an invisible condition, or invisible disabilities and all the stuff that we talked about. And I didn’t even have social media access, because it’s the ‘90s!
Lauren: That was the analog age!
Melissa: And that’s when my chronic pain journey started. It started with a sports injury and a mild concussion. And we didn’t know what was going on. I just continuously was in chronic pain.
I was actually training for the Olympics.
I was an Olympic hopeful for California, and I got to carry the Olympic torch in 1996.
Lauren: This was in track and field, right?
Melissa: Yes, correct, track and field. 800 meters was my event. And unfortunately, they sent me home in a wheelchair with no idea of what was going on. I think that they tested for everything.
Lauren: But how could we know back then, right?
Melissa: I know, and I don’t have any of my records. So we didn’t keep any of that stuff. I don’t know where it went. Those doctors closed their offices, too. So that’s where it kind of just started, and they were, like, “Well, we’re not sure what’s going on with you. We don’t know if you’ll be able to run again; we don’t know if you’ll be able to walk again.” So that’s where the journey started.
Lauren: And what was the injury that you had that sort of set it off?
Melissa: I was trying out for the volleyball team freshman year of high school.
Lauren: You’re so tiny!
Melissa: (laughs) And there was a guy that came in; he called himself a drill sergeant. I guess he had trained football players. So we were diving for the ball out on the grass and he had us doing those football drills and I didn’t even know what was going on. And I think I took a head dive into one of those … I don’t even know what you call it … where the football guys push it across the field?
Lauren: Oh, those soft things.The ones that are basically supposed to be football players!
Melissa: Yeah. It didn’t move. I mean, I was, like, 90 pounds. So 90 pounds trying to move that. And I ended up conking my head, because I have a klutzy past, so I did have some other head injuries before then. And they said that I kind of passed out, and I had a concussion — and just chronic pain from that point on that I just could not undo.
I couldn’t walk up the stairs. I was just really struggling; my head constantly hurt.
Lauren: Wow. So when did you actually get the diagnosis of fibromyalgia? How long did that take for you?
Melissa: I think they loosely gave it to me maybe a year after. And then again, when I got sent home with a wheelchair, they were, like, “Okay, well, we’ve ruled out everything else. So I guess it is really fibromyalgia. But it’s rare. We don’t see it in juveniles. We don’t even know what to do with it.” So then became the experiment of treatment plans, and lots of different cortisone shots, pharmaceuticals, to try to just get me back into shape.
Lauren: Well, first of all, you just touched on something … that fibromyalgia is rare. Is it actually rare?
Melissa: No, there’s been significant increase over the years. I mean, maybe in the ‘90s, no one knew. It was starting to come up, but I think, in juveniles, they still kind of deny it. But it’s definitely not rare.
Lauren: Okay. So you started talking about the cortisol shots, everything that you were getting. So tell me about the treatments that you went through and how you’ve gotten your health on track up to this point.
Melissa: Well, they started with the pharmaceuticals. They put me on all kinds of medication, that to this day, no one would even consider putting me on. I was really fortunate enough later to come across a great mental health team. And at that point, one of the doctors really evaluated everything that I was on, and he said, “This is why you’re having all these side-effects.”
Because I was in the worst state ever. I mean, anti-psychotics, anti-inflammatories, anti-depressants.
Lauren: Taking one pill to use as a Band-Aid for the one you were already on, kind of thing?
Melissa: But it was all mixed together, and I was barely 18 years old. So I was having extreme side-effects. And I’m just lucky that my parents didn’t commit me, because it was getting to that point. So I had the doctor look at it. He was, like, “Wow, I would never think to put a teenager on this amount of medication. No wonder.” So he really helped me sort it out, got me into a better place. And we really understood the side-effects, and I’m very sensitive to medication. So I started to look at more Chinese medicine and other alternatives to come into the play, but nothing necessarily really worked. I was still kind of declining, and the doctors told me, “Well, you have something autoimmune going on.” And this was 2013, because it was just getting worse, worse and worse. But again, they’re, like, “Well, take a few Aleve a day, there’s nothing we can do for you. Come back when you have a full-blown autoimmune condition.”
Lauren: Gee, this sounds familiar, doesn’t it!! It’s unbelievable how familiar this story is. It’s like the sick care system, right? We’re not even talking about preventive care anymore. It’s just like, “Come back to us in a few years when you’re really sick.” But you were really sick then.
Melissa: And I was getting worse, and worse and worse. So finally, in 2016, at the end of the year, I was just a mess. And then again, doctors just ran out of tools. I had really lovely doctors; they were nice, but they just didn’t know. Even my GI doctor, he walked me back to the pharmaceutical closet that they give samples for. And he’s, like, “Well, I have no idea what to give you. But here, maybe try a few of these.” And I just broke out crying, and he didn’t know how to respond, but I was in tears because I was so frustrated with what was going on. And I was fortunate enough to come across Dave Asprey on his Head Strong tour in 2017. And he talked about biohacking. And I was, like, what’s biohacking? And here was a software engineer who changed his health, and I was, like, wait, I have a biomedical degree, I can figure this out. I got empowered and excited. I started looking more at functional medicine. I think I was looking more at nootropics to try to get my brain health back. So I picked up The End of Alzheimer’s book, started reading it. I picked up Dr. Terry Wahls’ book and started reading The Wahls Protocol — almost at the same time. And I read The End of Alzheimer’s book and it really reminded me of fibromyalgia every step of the way. Because he talks about different types; you can overlap. It all sounded really similar to everything that I had gone through and everything that I’d heard among the fibromyalgia community. So I took his book with my Brain Octane in hand and just started working away at his ’36 variables of optimization’.
I gathered all the lab tests that I ever had, and looked back at everything and really saw that doctors kind of missed a few things.
Or, I had elevated levels in different areas of inflammation, but it was kind of ignored because it wasn’t high enough. Like it was just outside of range, or high range. For example, CRP (c-reactive protein), I was actually at 1. So it was higher levels, and I utilized that to kind of just create this whole 36 variables using his protocol, The Wahls Protocol on nutrition and movement. And got my life back.
Lauren: So you really found the the tools that worked for you. You didn’t commit to one way of doing it; you saw what was useful. You gathered all that information and tailored it to yourself. And that’s what you’re able to do for the people who work with you as a health coach, too, I imagine.
Melissa: Correct. It’s just complicated because I think sometimes we’re looking for that one cure or one thing to cure at all. Or we may try a gluten-free diet, and it doesn’t seem to work for us. But in this case, it was so multifactorial, and all these variables put together, that it’s really a challenge when it comes to personalized medicine to see what happens.
Lauren: So were you able to get off a lot of medications as you started going down this path?
Lauren: So where are you now in terms of your relationship to pharmaceuticals? Dare I ask?
Melissa: I don’t want to be anti-med, but I think we have to get away from mono-therapy. In conjunction to it, I would love to see more tests to see how patients actually react to the medication before you apply it, if possible. I know the tests exist, but it’s expensive and not everyone gets that.
Lauren: It’s genetic testing. You can do that with the full genome, right.
Melissa: Right. I love the genetics. I have the whole Methylation Pathway behind me in my office. So that’s part of what I use to optimize myself.
Lauren: That’s really cool. I need to come visit!
Melissa: Yes, definitely. And I can even send you a Pathway planner.
Lauren: Oh my gosh, that would be so exciting! Because it’s interesting because we do talk about some of these biohackers on the show — people like Dave Asprey and Dr. Wahls, and they definitely come up because they’ve helped a lot of people with varying conditions. It’s great to have someone like you on the show who’s had such wonderful success treating yourself with these ultimately fairly holistic approaches. And that you’ve been able to wean yourself off of your medications, and get to a point where you’re quite well and you’re managing your symptoms in a very positive way, it seems.
Melissa: And I could have never imagined I would be in this position to even get to feel better. Who would have thought that a cup of coffee, Bulletproof coffee, coffee with butter and Brain Octane would change my life forever. So it’s just funny to think about. But it really did.
And now that’s why it’s incredible. Because 24 years is a long time to wait this out.
Lauren: Yeah. So even though you had the diagnosis a year in, sort of, you still waited those 24 years before you were out of chronic pain, essentially, is what we’re hearing?
Melissa: Yeah, it’s definitely decreased my pain level. I’m not cured by any means, but to actually feel so much better? There is no way. If I talked to my old self back in the day, I probably would have flipped myself off — because there was no way I would have believed it. I was just trying to do stuff not to prevent myself from going bed-bound and demented, because that’s where I was going in 2016. I kept forgetting how to get home when I was driving. I was tethered to a bathroom. I had been using my wheelchair so much that I was going to get an electric wheelchair. So that’s the state I was in. So anything and anything that I could have found to prevent this was what I was open to.
Lauren: And no wheelchair in sight now.
Melissa: No, my pain is decreased. There’s still moments, like post-exertion, that I’m still trying to figure out.
Lauren: Well, why don’t you talk to us a little bit about how you’re managing your symptoms on a daily basis? What does a typical day look like for you as you’re aware of your body and your needs to adjust certain activities?
Melissa: A lot of breathing exercises, especially when I wake up in the morning because I’m just trying to calm myself. I know that there’s an anxiety component within this.
Lauren: You’ve mentioned mental health before, and it’s a really important thing to talk about, the connection to chronic illness, right?
Melissa: Right. So I have to manage; I will go through that. I make sure not to pick up my cell phone first thing in the morning. I go and make my coffee and breakfast, and then come back and sit down and do work.
And it’s hard because I have a workaholic personality.
Lauren: It’s always us!
Melissa: So I’m just working and constantly doing that. But I love taking breaks and hanging out with my dog Toby and just rubbing his belly. He distracts me; I think he knows when I need it because he’ll come and nudge my leg and want attention.
Lauren: Time to stretch, Mom!
Melissa: Definitely! So it’s a great break. I grow my own food so I have a vegetable garden. And if I don’t pay attention to it, either the bugs attack it or it just dries out and dies. So it really has helped me focus, and then get outside more, too.
Lauren: Yeah, that’s really great. And was that mostly inspired by Dr. Wahls, growing your own produce?
Melissa: I work with someone that teaches people how to grow their own food, so this started earlier. And I think it was also, in part, a rebellion against the doctors, because they were, like, “Go eat organic, go exercise.” And I’m, like, “Well, I’m growing my own food. So how organic can you get? What else do you have for me?”
Lauren: Yeah, absolutely. And I think it’s really exciting. And you do have a couple of different handles on Instagram which we’ll link to, of course, on the web page for the episode. But you talk about the different produce you’re growing, and how you’re using it in recipes, and things like that. So it’s really showing people how many options are out there, if you’ve got the space, and you’ve got a little bit of time. Because actually, even though they do take maintenance, some veggies and fruits are kind of easy to grow if you’ve got the space. So it sounds like you were diagnosed as a teenager … did you discover that you needed a personal advocate at any point in this journey to diagnosis and to wellness? And who has that been, if so? Unless it’s been you becoming your own advocate.
Melissa: I wish I had a personal advocate. It would have helped a lot, especially with school. And I think that’s why establishing Support Fibro has been so important to me, because I don’t want anyone to go through anything that I had to. Especially within the school systems and advocating. I wanted to take less classes for my degree. It seemed like a trend, that people told me, “Well, why don’t you drop out and come back when you feel better?” So these are the things that were given to me.
And had I known there were disability services, that would have helped tremendously.
So personal advocacy is something that we’ve integrated in the nonprofit.
Lauren: That’s great.
Melissa: But I think a big component that I learned, as I started health coaching, was: wait, it’s also about personal advocacy to help people get through these. But in a part of it, I’m doing the health coaching. So it adds this whole new component so they can take it back home. It wasn’t just fighting the system, but how can we integrate that into their own personal lives as well.
Lauren: So you’re really taking the work that you’ve done for yourself, and applying it so that other people are able to seek help, and perhaps more effectively and more quickly than you were able to?
Melissa: Yeah, I can’t let people go through anything. I think I might be an advocate with the biggest chip on my shoulder!
Lauren: It’s a good chip. You’re getting stuff done with that chip on your shoulder.
Melissa: I’m very determined. Now that I’ve gotten a break in my health, I am going for it as fast as possible. Because it pains me to read the comments. And even to meet people in person where they drop out of high school because of a PE coach, or something like that. I was like, no, we need to change this! I mean, there’s so many beautiful minds out there. And we need to empower them to get involved, and I really think that we can change the system.
Lauren: Okay, so let’s jump into your work with Support Fibromyalgia. You founded this nonprofit, you’re working your butt off, getting the word out, you’ve been to DC, you’re getting groups together to lobby. Tell us about the scope of the work that you’re doing with Support Fibromyalgia.
Melissa: It almost feels too much right now because people keep advising me to focus.
But I’m struggling to focus because there’s so much to get done.
Lauren: But you’re focused on fibromyalgia … that’s not enough??
Melissa: Well, all these components — patient education, medical education, research and then advocacy efforts. The amazing thing was, I was able to connect with a bunch of patient advocates across the country who really felt that we needed to come together. So they’re actually taking different parts of the program because they have strengths in it. So we’re all working together to move fibromyalgia forward.
Lauren: Yeah, that’s amazing. And you mentioned in your acceptance speech that you’re going to hit the road in 2020. Can you paint a little picture of what that looks like, and where people can expect to find you if they want to connect with you?
Melissa: I have been traveling around, hitting the road. And I just love meeting people in cities and hearing their stories and sharing the experience — because I need to learn how we can improve this system. It’s kind of my own form of market research. For 2020, we’ve been fortunate enough to receive a small educational grant. So what we’re going to be targeting is not only metropolitan cities, but some of the food deserts to really challenge us to fill in the gaps for people — not only with fibromyalgia, but autoimmune conditions.
Lauren: Absolutely. I was gonna say, it’s not just fibro!
Melissa: We’ve been getting a lot of autoimmune patients, and we’ve been doing a lot of work with lupus advocates.
Lauren: And this is great because you’re getting involved at a grassroots at a local level, but you’ve got a larger scope as well. So you’re working both angles, and you’re building the team as you do it, and gaining so many amazing skills. I’m amazed at the breadth of what you’re doing.
Melissa: We tried to start with medical education first, and I really hit a wall. I was trying to target The Institute for Functional Medicine, too; that’s why I became a functional medicine coach. But it’s difficult to maneuver and providers say they don’t have enough time. But how do we educate the primary care physicians? So we kind of maneuvered and then started focusing on patient education. Because if I can empower the patient, get them this information for free, and put it out there … and they can take the initiative to apply it if they need to, but ask questions. So that’s why we’ve got to get this information out there. I don’t know why this worked for me. I don’t know; I don’t claim to have all the answers. But if I can keep giving this information out to people. I’ve met other biohackers on the road who are patients, really struggling and felt left behind in the system … so they’re doing their own work, too, just like I did.
We’ve been really having major discussions and just giving each other the information — and it’s been really powerful.
Lauren: It’s funny because a group of us met for dinner last night and some of us were talking about CBD, and you chimed in, “But has anyone tried MCT and Brain Octane?” And I thought, no, I haven’t. Do I need to?? It’s opening up doors to so many of us, and I think interestingly with biohacking in a way, it’s more of a return to the way that our bodies are built to function anyway. So we’re going to function optimally when we’re treating ourselves right.
Melissa: I know, and it’s constant experimentation and testing. Because even here, I don’t usually do a lot of experimentation on the road, but I was so exhausted the other day, doing all the walking. So I have exogenous ketones, and I just started to give it a try. And I was like, whoa, this actually worked!
Lauren: You’re workin’ really hard. What about balancing work and life? I know you take your time in the morning and you don’t check your phone right away … are you finding balance, or at this point is it sort of do-or-die, we got to do this for everyone?
Melissa: It’s challenging for me to find balance. The amazing thing is, my boyfriend and I do a lot of work together. So when we travel together, we can do work-cations. But I still find so much joy. I think everyone worries about my burnout, but I am so determined. I have a lot of joy when I do the work. I spend time with Toby and we hang out, I take breaks, do the growing my own food. And I use it as a visualization exercise sometimes, because sometimes I see so much stuff that frustrates me. And so I sort of visualize myself … I plant something in the ground, send out that negativity so it’ll grow something beautiful. So, doing those exercises and stuff like that. I think it’s just been being bed-bound for so long and homebound, I had to come up with different ideas — like pulling the blinds just to stare out the window and do breathing exercises. And imagine myself being outside. Now that I’m outside, I was like, I’m just going for it!
Lauren: Yeah, in a way it sort of allowed you to engage more with your imagination, hasn’t it? Being bed-bound has made you go from living more in your mind to being able to apply that into this beautiful, colorful world that you’ve been able to engage with more.
Melissa: Yeah, and I had to keep myself really occupied when I was bed-bound because I really struggled with depression.
And so one thing I reminded myself of was just to keep learning.
So I taught myself how to code. I could build WordPress websites.
Lauren: Who are you??
Melissa: I just had to keep myself focused, learn more of social media marketing and IT support — anything to just keep me focused on work. Which sort of became a coping mechanism in some way, and it’s hard to break — but that’s what I turned to.
Lauren: Yeah, and you gained skills that you can not only use in the work that you’re doing now with the nonprofit but also, that’s those are marketable skills that you can be working remotely doing.
Melissa: And it helped me survive, and it helped me connect with people. I did hide fibromyalgia for a long time. A lot of my clients that I was working with … I would kind of show up for meetings, try to close deals, and then I would go work from bed. So I’d have the laptop on the bed, or sometimes it was so bad, I’d have the laptop on my chest, trying to type.
Lauren: And then you lose feeling in your fingers.
Melissa: But no one knew; I hid it really well for a long time. Because even before I started the organization, some of my clients said, “Why would you start a nonprofit in fibromyalgia?” I was, like, “Because I have fibromyalgia.” And they’re, like, “What?!”
Lauren: Surprise! And now you dyed your hair purple. So we have to ask why.
Melissa: It’s all for that.
I’m naturally an introvert, so the purple hair helps that — especially at medical conferences.
They don’t remember my name, but they’re, like … Girl with purple hair: fibromyalgia!
Lauren: Which is the color for fibromyalgia support, which is awesome.
Melissa: And lupus.
Lauren: And a few other ones, yeah. Now, I didn’t ask you … have you got the symptoms all over your body? Or are they more local in certain areas?
Melissa: Oh, it was definitely all over the body. But it started to get worse with the joint pain. That’s what was happening in 2013. My antibodies were super high, but they couldn’t give me a conclusive diagnosis. So I had antibodies in various places — thyroid, indeterminate colitis came up. Definitely RA.
Lauren: Well, yes, I was going to ask, but with RA I believe that some of the tests are a little different. But also you end up having joint issues that sometimes become visible, right. But with fibromyalgia … also an autoimmune condition, if I’m not wrong?
Melissa: No, it is not there yet. In history, it used to be in that category. Because I was looking at all the legislation at congress.gov when I was doing research. It used to be in the autoimmune category when they were doing advocacy efforts. But now they’re doing Central Nervous Disorder Syndrome. I wish we could come up with something conclusive. Every expert disagrees on the definition. They may be, like, “Oh, yeah, yeah.” But then when they go back to practice, they practice something completely different in the definition.
Lauren: It’s really interesting, because we need to know where these diseases start because sometimes the treatment needs to be a root cause approach, right? So at the very least, what you’re doing with your diet and your lifestyle are things that are certainly root cause in their reducing negative environmental factors, I imagine. This is where research is so important.
Melissa: Yes. And that’s why we went to DC this year to do the Fibromyalgia Advocacy Day, Because those are things we’re asking for — increasing funding for fibromyalgia-specific research. But one of the things that we need to do is get the websites updated, because the CDC categorizes fibromyalgia and arthritis. The American College of Rheumatology says it’s not arthritis; they’re seeing more of a neurologic condition. And then even rheumatologists, they say they can diagnose you, but it’s up to the primary care to treat you.
Lauren: So no specialist!
Melissa: There’s no home. And then we’re not put into a neurologic-like category as far as the NIH goes. So where do we fit in? And we see a lot of people with fibromyalgia and the autoimmune conditions. Especially lupus.
There’s a lot of familial genetic components.
Lauren: Yeah, absolutely. We know these diseases exist, right, but it’s amazing to me that there are so many authorities — or companies or organizations that we consider to be authorities — that are all very different in their approach and opinion on all of these things. We’ve all got to choose the outlets that speak to us the most, of course. But that’s why it’s great, because you’re also providing a lot of information and insight for patients and for caregivers. We know that you’ve gone through chronic pain, being bed-bound, being in your wheelchair. Throughout your experience with fibromyalgia, have you had experiences where you’ve had to justify to people that you had something going on because they couldn’t see it?
Melissa: Yes, quite a bit. I mean, just through the school systems. But even in business life. Something that stuck with me … and I had to pick my battles. That’s why it’s like taking this on in a different route was simple stuff, in some sense. I was at a business networking event, and they picked a place to have the networking event that had no elevator. This was repetitive every week, and I just couldn’t get up the stairs.
Lauren: Access, guys!!
Melissa: When I talked to the president and I told her what was going on again, again it’s the whole …”Well, why don’t you come back when you feel better” type of thing. And I just became a problem child within that network.
Lauren: Squeaky wheel though!
Melissa: It didn’t feel like it; there was no disability policy. And my boyfriend was, like, “Well, if you if you take them on now … maybe there’s a bigger fight somewhere else, and you can return back?” But I was, like, “Look, you need to have a disability policy for people so it can be more inclusive.”
Lauren: Absolutely. I mean, at this point, it seems to me if you’re hosting a conference, if you’ve got some kind of networking thing on, if you’re not making your content accessible, then you’re screwing up. I mean, at this point, right? We know that there are people in wheelchairs at the very least; they need an elevator.
Melissa: People forget. I’ve been with Victoria, one of the other winners, and it’s just like the longest pass to get into a place with a wheelchair. Or things are always broken, they’re not up-to-date. This is problematic, all over the place.
Lauren: That something for employers and organizers and everyone to be aware of. So, can you talk to us … has privilege or a lack thereof played a role in your experience in treatment and diagnosis, in the way that you’ve continued on with the fight for awareness for fibromyalgia? Does the word ‘privilege’ have meaning in your experience?
Melissa: I feel fortunate that I had the means to do what I could, even though it didn’t really seem to be helping. But I think that’s why I feel like I’m in a good position right now to help others.
Because I’ve really learned along the way from different people.
A really good friend of mine in college, I’ve just watched her take on two jobs, do a biomedical degree. I’m so impressed with her. She graduated with a PhD in immunology, never getting any help. So she taught me so much when it came to these circumstances. And then I get to talk to other people. Just having a Patient Advisory Board with patients on SSI, single parents, veterans … I am learning so much. And we’re all coming together to create real solutions for the patient community. And that’s what is going to really matter.
Lauren: When you say the patient community, you literally mean across the board, all socio-economic statuses … really everyone. Really creating an inclusive community.
Melissa: Yes, across the board. I really saw, even in Stockton, California with a lupus and fibromyalgia event, there’s some racial bias that’s coming up. And even just, like you said, filling in those gaps of food deserts. Because the data is there, so that’s why we’re tackling that in rural parts of the country. And let’s see if we can figure out better solutions to get people on a better track of empowering them.
Lauren: Yeah, absolutely. Well, while we’re talking about getting people on a better track and all the work you’re doing, let’s touch very briefly on a very big can of worms … which is the health care system. I’m wondering, in what way you see the healthcare system working for patients with fibromyalgia? And in what ways you can tangibly imagine improvement?
Melissa: It’s improved with providers knowing what fibromyalgia is. And I think there’s a lot of assistance programs out there that are getting patients the health care that they kind of need. But we can definitely go much further. I think this is the struggle. It was hard watching an earlier panel today; it just feels like every time we watch all these debates, the politicians are just arguing about health care, but no one’s getting solutions. All these co-pays, and pain trying to get insurance — just in general.
Lauren: And this is just across the board.
Melissa: Yeah, it’s across the board for all of us. And I think that’s why it’s so important, too … not only focusing on disease specifics. We’re working on fibromyalgia, but what I really want to do is collaborate with other organizations and other illnesses, chronic illness advocates, to really come up with solutions for those major issues. Because we’re going to need numbers.
So if we’re going to go to DC, let’s all gather to address insurance issues and affordability of prices, and those things.
Lauren: And it sounds like this is a great opportunity to get the word out a little bit, and get people to start coming more so that more of us have a seat at the table … and perhaps throngs can appear in DC. Last time, it was 30 people; next time, maybe it should be 300. The more of us who show up and who stick together … because we all want the same thing. Even people who don’t have chronic illness, right? We all want it to be better and to work better for us.
Melissa: Right. And 2020 is going to be a big year, and I keep telling people … all of the politicians are traveling around the country. Let’s go to their events; let’s be there as a presence when they have town halls. Let’s make sure our questions are answered. That’s what I’ve kind of been doing. So anyone that’s been coming to LA, I’ve been going to their events and trying to get my questions answered, meeting with them. Whatever time I can to get with them.
Lauren: You’re a goer!
Melissa: But I think we need more people showing up. I mean, even if we made it fun. We could have matching T-shirts so we’d stand out or something. But really just to be in their faces all the time. And especially with polarizing conversations like opioids. They’re talking about that, but they need to hear from the chronic pain community constantly. So those of us that can go and physically be there, let’s do it. And let’s join forces all together.
Lauren: Absolutely. So we’re coming to the end of the interview. And I wanted to round things up, as I always do with my Top Three lists … two Top Three lists. The first one is: What are your Top Three Tips for someone who maybe suspects they have some kind of invisible chronic condition going on, someone who maybe already has a fibromyalgia diagnosis and is at a loose end? What would you recommend for people tuning in, that they can do to cope better?
Melissa: Well, the biggest thing is to always just keep fighting for your health. I know sometimes it gets discounted and frustrating; you’re jumping around from doctor to doctor. You don’t feel well.
And there’s something going on when you just don’t feel well. And maybe there’s not a label for it yet, but just keep looking at it.
Of course, keeping your records has been an important part of my journey.
Lauren: That’s a really important tip.
Melissa: And just keep asking. You can ask the doctors to give you the records. And now with online data, you can get more information. Even lab testing. So just keep on top of that. And then keep updating the doctors frequently with it. Even if they specialize in something, I always just say, always just bring everything with you. Keep fighting for your health. It’s super important.
Lauren: And if you don’t know how to do that, look for Support Fibromyalgia and other organizations that can help you learn how to advocate for yourself and how to keep those records, and how to talk to your doctors in their own language sometimes, right?
Melissa: Right. And that’s even a bigger point … reach out to other advocates. There are so many amazing bloggers, podcasters, doing great work; just reach out to them. Everyone’s personable and responds; ask questions.
Lauren: We don’t bite!
Melissa: Just ask questions; there’s great information and tips out there. It’s just an amazing experience to be involved with the community.
Lauren: How are you so positive? I love how you were bed-bound and in a wheelchair … now you’re, like, “Yay!” How did you make that journey mentally? You were depressed, but it’s hard to believe that, sitting here with you now, because you’re so positive and productive in the work you do. It sounds like there was just a switch that went off at some point.
Melissa: It was a process. I mean, a great mental health team is really important. Psychotherapy really helped me to let go of all the shame and guilt I had, because I didn’t have any coping skills at 14; they don’t teach that in school.
And yeah, there were long points in time where I struggled with all of the suicidal ideation. I just wished I’d never woke up at points.
So the transition has been a long journey of just understanding that I can do this and figure this out, and I’ve always had this element of hope.
Lauren: But it sounds like the hope is in the educating yourself and empowering yourself to actually be able to speak up. It’s in the being able to … if you can’t stand up on your own two feet, maybe you can stand up on your ideas.
Melissa: Right, and I think that’s the weird thing … what biohacking brought me is, like, oh wait, I do have the power to take back my health. I just was running around so much to doctors and giving everyone else my power. I was, like, wait, I could do this.
Lauren: It’s really wonderful. I think it’s very inspiring for everyone listening, too. Okay, the last Top Three list: top three things that give you unbridled joy … that maybe you’ve made adjustments in your lifestyle, obviously with biohacking … top three things that you’re not willing to compromise on … that you might still cheat with, or have a guilty pleasure … even a comfort activity. Three things that you turn to that you will never give up because they just make you so damn happy.
Melissa: I’m pretty honest. It’s interesting with my character strengths. The top one turned out to be honesty, so I have to probably watch that one.
Lauren: Not willing to give it up, though!
Melissa: No, I think just being open-minded and talking to people is a big part of it. And standing up for what I believe in. I know I get a lot of tips for business … “You should do this. You should do that.” I really go with my gut instinct that I know from life. So what were the hiccups in my own life; let’s go fix those things.
And it is a struggle to stop working sometimes.
But I think what’s so amazing is that when my boyfriend and I get together, we do a lot of the creative aspects. I love creativity; I love science. So even though I’m studying methylation pathways and histamine pathways, I just get so much joy out of it. And again, growing food, playing with Toby is all an important part. So I do take breaks, but there’s just something so amazing when you get creative and talk about marketing all the time, or yakking about science.
Lauren: So, never giving up those creative ideas — or that wonderful garden you’ve got at home, too.
Melissa: And being okay being nerdy!
Lauren: Yeah, you’re really okay with that! I mean, don’t you even call yourself nerdy on one of your Instagram profiles?
Melissa: I’ve just been told all the time, “You’re such a nerd!”
Lauren: That’s such a good thing!
Melissa: It’s kind of taken in a negative context; it’s a backhanded compliment sometimes, but I’ve just embraced it. Just being outside the box.I’m really into punk rock music. So we’re going to just stand up for people.
That was the principle with Support Fibro that I told everyone on our team: We’re going to take the mosh pit ethics here. When the circle pit starts, if someone falls down, we pick them up.
Lauren: I love that. I really, really love that. So Melissa, tell everyone where they can find you online if they want to learn more about your work and about Support Fibromyalgia.
Melissa: Well definitely, you can add me on Facebook — Melissa Nerdy Talwar. You can find us at Support Fibromyalgia — SupportFibro.org — we have a Facebook page, Support Fibromyalgia. We’re on Instagram. Twitter is Team Fibro, because for some reason I couldn’t get Support Fibro.
Lauren: Yeah, some of them are already taken. And Instagram, too?
Melissa: Yeah, Instagram is @SupportFibromyalgia. I also have @BiohackFibro, which is there for my nerdy side of the health coaching.
Lauren: Exactly. It’s more for the health coaching, for sure. Well, Melissa, is there anything else you’d like to add before we let you go today?
Melissa: This has just been great, connecting with everyone in chronic illness. I just want people to know that you’re not forgotten. If you’re out there feeling left behind, alone … we are definitely creating solutions. And we’re going to fix this. We’re going to create the change, and you’re definitely not alone. Reach out to all of us.
Lauren: There’s hope. Thank you so much, Melissa. It’s been a total pleasure having you on the show.
Melissa: Thank you so much.