Jaime Sanders’ journey with migraine has been life-long. From a toddler with abdominal migraine to a wife and mother with chronic intractable migraine, Jaime has learned to turn her pain into empowerment. She also manages her daily life with depression and anxiety, surviving two suicide attempts, along with fibromyalgia, carpal tunnel syndrome, spinal stenosis and chronic back pain. Despite these conditions and their limitations, she strives to do her best to find her optimal health. Advocating for headache disorders and mental health are her passions. She is the author of the award-wining blog The Migraine Diva, and was the Migraine Patient Advocacy Coordinator for Global Healthy Living Foundation. Through her work with GHLF, Jaime contributed as a patient reviewer for their First Edition Migraine Patient Guidelines. She is also partnered with the American Migraine Foundation and Shades for Migraine and is a stakeholder with the Coalition for Headache and Migraine Patients and the Headache and Migraine Policy Forum. Jaime is a member of the Society for Women’s Health Research Interdisciplinary Migraine Network and helped to curate their Migraine Patient Toolkit. She also sits on the Patient Leadership Council with the National Headache Foundation. Through her advocacy work and blog, Jaime’s mission is to make a very invisible disease visible to the rest of the world and validate the real pain of millions. You can find her written work on Migraine.com, Teva’s Life Effects Program sponsored by Healthline Media, NewLifeOutlook.com, HealthCentral.com, and PracticalPainManagement.com.
Tune in as Jaime shares:
- that she was diagnosed with migraine at eight years old
- that she has lived in chronic pain since the age of two — in the form of abdominal migraine
- that her mom also lived with migraine — and as such, she had a shoulder to lean on from the very beginning, as well as someone to learn advocacy from
- that having support from such a young age was critical to the foundation of her advocacy work
- how chronic pain is directly connected to mental health — and that she lived with depression from an early age because of her pain
- that she was diagnosed with fibromyalgia in 2012
- that she developed fibromyalgia as a direct result of persistent daily migraines, which had her central nervous system working in overdrive
- that migraines often have no known cause, and are totally individual to the person who lives with them
- that she manages her pain with a combination of medications and holistic methods: Botox, nerve blocks, massage, CBD salves, and meditation, among others
- that the pain scale is subjective, and her pain is at level 2-5 daily
- that aside from chronic pain, she also lives with gastric distress symptoms every day — and how the brain-gut connection is so clear when you live with chronic pain conditions
- how she finds self-worth and confidence in her relationships…and beyond her pain
- how she minimizes stress to manage her spoons
- how she tackles the “angry Black woman” and “hysterical” narratives
- that migraine is so much more than a headache
- what’s coming up for her: she is the lead writer on a new white paper aiming to address disparities in communities adversely affected by migraine and headache (the incarcerated, immigrants, and BIPOC, among others)
Lauren: All right, guys, thank you so much for joining us. I am here today with Jaime Sanders. You may know Jaime as The Migraine Diva. She lives with chronic migraines, fibromyalgia, depression and anxiety. And she's going to talk to us all about it. Jaime, thank you so much for joining us today.
Jaime: Thank you for having me. I'm excited.
Lauren: Yes, absolute pleasure to have you on. Let's start at the beginning of your story, as we do every time. I would love to know how you first realized that you had something going on health-wise, and what steps you've taken to control your health and to get these diagnoses?
Jaime: Sure. So migraine actually started for me when I was a child. I was diagnosed with migraine when I was eight.
Lauren: Wow, that's young.
Jaime: Yeah, that's a long, long time ago. And that was really difficult living as a child with migraine. But going back and looking, I actually had abdominal migraine when I was two. So I’ve pretty much spent 40 of my 42 years with migraine.
Lauren: That is unbelievable. Especially as a kid living with chronic pain like that, it's so hard to understand, to process even when adults are telling you what's going on. How have you been able to grow through that and understand yourself with these diagnoses from a young age?
Jaime: What was helpful was, my mother had migraine herself growing up. So I had her understanding and being able to explain migraine to me, and empathize and sympathize and be very compassionate about my pain. That, I think, saved me throughout my childhood. Because if I didn't have that … I also had a first cousin who had migraine, so having that in the family definitely made it a lot more understandable for me. It didn't make it necessarily easier to live with. But I didn't have to deal with not having my parents or my family understand what I was experiencing.
So having that support from a very young age was very critical in developing the person I am today with advocacy, because that's a very strong foundation for me.
Lauren: Absolutely. We’re going to talk about what advocacy looks like to you in a minute. But I'm also curious about these additional diagnoses. How did those come about? And how have you also treated fibromyalgia and the depression and anxiety?
Jaime: I could definitely say, looking back, that I was depressed as a child, just because of the migraine, and how it impacted my life and kept me from showing up and participating in life as a child. And dealing with the stigma, especially back in the ‘80s … it was really difficult back then … “Well, she’s just having a headache.” And during that timeframe, your teachers were all a lot older than you. So when you try to explain to them, “Well, I'm not feeling well.” And every day almost I had some type of abdominal issue, because of the migraine. I didn’t necessarily have the head pain. But I had the nausea, the upset stomach, and definitely the sensitivity to light and all that. But if you’re constantly going to your teacher every day with the same thing, they're going to think, well, you just don't want to be in school.
Lauren: Yeah, it's like the boy who cried wolf.
Jaime: Right. And you have adults who explain to you or tell you how you're feeling — instead of listening to you saying, “No, this is what I'm experiencing,” and accepting that. So that part was very hard for me.
Lauren: It’s got to really sort of skew your relationship with authority in many ways, too, doesn't it?
Jaime: Well, I wound up really hating going to school. And on top of that, I was always in gifted programs, because I was always excelling. I have this perfectionist personality. So that, on top of dealing with this pain, just made school someplace I didn't like to be. And I also had peers who really didn't understand either. And who would say, “Well, you're just faking it, because you don't want to be in school,” and, “Why are you absent so much?” That was hurtful to me, especially if it was coming from someone who I thought was my friend.
Lauren: That’s where able-ism begins, isn't it?
Jaime: Yes. Because you look fine. You don't seem sick. So that definitely fueled the beginnings of the mental disorder, for sure. And I remember my family saying, "Oh, she's so melancholy.”
That's when I started writing a lot of poetry. And it was very sad. But that was the only way I felt comfortable sharing, or expressing how I was feeling.
So, depression and anxiety showed up, I would say, in elementary school, middle school, that timeframe. But I wasn't diagnosed officially until my early 20s.
Lauren: Wow. So you went a long time without any support there.
Jaime: Right. Because I just thought, well, I'm just never going to be happy, kind of thing. And I'm just never gonna be able to feel those feelings genuinely.
Lauren: This is your lot.
Jaime: Yeah. And what finally made me feel like this was not normal was during my last pregnancy, in my last trimester. It was New Year's Day; I woke up and I remember feeling like I had no connection to this baby I was carrying. I felt like when I gave birth to my child, I was not going to be able to love it. And I love being a mother; I was always excited to give birth to my children. So I knew that was completely off — and it scared me. So I called my doctor immediately. And I was diagnosed with pre-partum depression. That was my first depression diagnosis.
Lauren: But also a temporary one — when it's something that you've had since you were a kid.
Jaime: Right. It kind of lingered after that and manifested differently, but I was able to recognize what those feelings were, what they meant. And so I was able to get a proper diagnosis later on.
Lauren: Wow, well, it's a good thing you've got the diagnoses now. I’m sure that makes a whole hell of a difference when you're seeking support and understanding that you can actually seek support for these conditions.
Jaime: Yes, yes. And I'm one who never shies away from speaking about what I'm experiencing. Especially as a woman of color, I know, in our communities, talking about mental health is taboo and it's a sign of weakness. Even on my mother's side, there's this mystery of my great-grandmother and her mental illness. Few people really know the true story behind it. Nobody wants to talk about it. So I’m really upset about that, because that can identify so many things for me and so many other people in my family who have mental illness. That’s a big key that can unlock a lot of mysteries for us.
Lauren: Well, and she could easily have had migraines and depression and anxiety because of it, and because of her generation been called hysterical.
Jaime: Exactly, or maybe going through something, and they labeled it as depression or something more serious, or psychotic, or whatever.
But it was important for me to be transparent and open and deal with my emotions so that they don't overwhelm and overtake me in my life.
Especially as a young mother at the time, it was important that I took care of that, so I could be there for my children.
Lauren: Absolutely. Now, when did the fibromyalgia start popping up for you?
Jaime: That occurred in about 2012. I basically started to feel just run down all the time. My body would just hurt; it would feel like I was a human punching bag. I would have low-grade fevers every day; I would have horrible night sweats where I would wake up and I'd be completely soaked; my sheet would be just completely soaked through. And I would have really, really bad dizzy spells to the point of almost fainting. I had all the tender spots that come with fibromyalgia. I remember going to see my doctor. She was, like, “Well, you have myofacial pain syndrome.” I’m, like, “Well, no. I read up on that, and this seems a lot more like fibromyalgia." And she was persistent that it was MPS. I’m, like, “No, it's not,” and I kind of had to fight with her and be, like, “Well, if you don't get me a referral to a rheumatologist, I'm going to find a new primary care doctor.”
Lauren: This is how you advocate for yourself!
Jaime: So she quickly got me that referral. And I was properly diagnosed with fibromyalgia. And the rheumatologist basically told me the reason why I developed it is because of my chronic migraine. At the time, I had chronic daily headaches, a new daily persistent headache. My central nervous system was on 24/7. So the pain manifested everywhere else in my body.
Lauren: Absolutely. It makes total sense, doesn't it?
Jaime: It does. But it was a devastating diagnosis for me, because I was already at my wit's end trying to find a treatment that would help reduce the severity and frequency of my migraine and daily headaches. And now I had something else on top of that. I was devastated. I cried. Because I don't want to deal with another pain syndrome. It’s too much to handle. It’s really hard enough to deal with one, but to have multiple? At that time, that was my fourth pain diagnosis.
Lauren: Wow. And this is one of those things that none of us would choose to have these syndromes. If we could all live pain-free, we'd much prefer that lifestyle. But then being accused of others, because we live with pain, and people don't believe it, that can be even more pouring of salt on the wound, really. So how are you keeping your pain under control? How are you managing your body pain, your head pain with the migraines and the nausea and all the side-effects from day to day?
Jaime: Well, for the fibromyalgia, going on six years ago, my therapist at the time recommended her good friend who was a naturopath. So I went to see her to help with the migraine and the fibromyalgia. The migraine was really difficult to combat, but with seeing her and really tackling my gut health, and my diet, and going through different protocols and detoxes, I was able to put my fibro in remission. And it's pretty much stayed that way. I don't have the night sweats. I don't have the fevers, I don't have the dizzy spells. My body is still very sensitive; I still have the allodynia, the sensitivity to touch — that part's still there.
But I don't feel like I'm getting beat up all day.
And I remember telling my rheumatologist when I was first diagnosed that my feet felt like I had ‘Jesus feet’. That was the only way I could explain it, because it felt like I was getting stakes through my feet. I was, like, "I feel like I have Jesus's feet!”
Lauren: That’s a great description!
Jaime: Yeah, that's the only way I could put it in a way where people could understand that type of pain I was experiencing in my feet. I'm not experiencing that anymore. She definitely helped me get that into remission. The migraine … I think because I've had it my whole life pretty much, and migraine is so mysterious and individualistic to each person who experiences it, and there's no known cause, that really has not changed for me. I am currently intractable; I've been intractable for 13 years. So I've been in pain every day for that amount of time. And it fluctuates. I've been able to pretty much manage my pain through a variety of preventive medications, getting Botox and nerve blocks, getting massage therapy, using meditation, relaxation, deep breathing; CBD salves really help me, essential oils. Doing that helps keep my pain in a place where I'm not at a 7 or above every day where I used to be. I'm pretty much between a 2 and a 5. Once I get above a 5, then I classify that as an attack — even though I'm currently in one every day. If it gets above a 5 on the pain scale for me … and it’s subjective, because my 5 is different from somebody else's 5 … but when I get to about a 6, then I'm not able to function as well. And that's when I have to resort to possibly using my horde of medications with my rescues. That's pretty much what my life is like; pain is involved in it every single day. I don't really experience nausea and vomiting. That went out the window as I became an adult, which I'm kind of grateful for. But I do have gastric distress, so I get a lot of abdominal pains, though. And lovely diarrhea. TMI. Sorry!
Lauren: No, we talk about poop all the time on this show! (laughs)
Jaime: And that can last … the worst episode I had of that was like 12 hours.
Lauren: Wow. So it's like having a stomach flu?
Jaime: Yeah. Because there's a whole nervous system in our digestive tract and in our intestines.
Lauren: It’s our second brain!
Jaime: Right. It’s completely affected by migraine and with fibro — that's why we have IBS and things like that. So it can be quite a struggle. Ginger is my best friend. There's lots of ginger; I travel with it, it goes everywhere with me.
Lauren: Well, this is the thing about … have a friend who has chronic illness — because we always have a survival kit with us!
Jaime: Yes, yes. I have my migraine toolkit and those of us in the migraine and headache community talk about our toolkits, and we do not leave home without it. It is mandatory.
That is our life jacket, basically. All of our stages of rescue are in there.
We have our first line, our second line, our third line, and so forth. So that's very important that we carry that with us.
Lauren: Where is your pain right now, today, as you're talking to me?
Jaime: My pain right now is behind my left eye. That's usually where it is. And it's fluctuating. Before we started, it was about a four-and-a-half; it has kind of dialed back down to a three-and-a-half. It will probably continue to do that all day. So I'm hesitant using any medication right now, just because it's kind of doing its thing. But what I'll usually do is use my salves and my essential oils. One thing I really like to do is to take a shower, and I use Dr. Bronner's Peppermint Castile soap, which I love.
Lauren: That’s my favorite!
Jaime: I put a couple of drops of eucalyptus oil to defuse in the shower. So the combination of the two really helps to alleviate some of my pain. I'll do that. So I try to attack my pain as naturally as possible. And if I need to, then I resort to my medication.
Lauren: So let's swing back to this discussion about you becoming your own advocate. Because it sounds like, certainly when you were younger … and your mom has migraines as well, so she was able to guide you through those early experiences of pain, and must have advocated for you and been an example of how to become your own health advocate. Can you talk to us a little bit about that relationship, and how that advocacy impacted your relationship with your mom, as well? And with yourself.
Jaime: Sure, absolutely. I remember my mother always sticking up for me and always arguing with teachers and other people. They’d say, “Oh, she just has a headache.” “No, it's not a headache, she has migraine is completely different!” This, this, this, this, this, and she would set them straight every single time. And that made me feel so validated and made me feel really, really good. And I think that played a big part in our relationship, because we are extremely close. She's my first BFF.
Lauren: She was the first person to believe you.
Jaime: Yeah, most definitely she was. And because of her, I was able to get diagnosed that early, and actually see a neurologist at eight years old in 1986. Like, who does that?
Lauren: Yeah, no, that’s pretty exceptional!
Jaime: It is exceptional; my story's very exceptional. And I always make sure to say that I am a rare case, when it comes to that — especially as a child in the 1980s in New York City, as a child of color … like, that doesn't happen. So she definitely advocated for me, strongly and fiercely.
And she definitely instilled in me the voice that I didn't know that I had until much later on in life.
I'm very grateful to her for that lesson of advocacy, and standing in your truth and being okay with that. That there's nothing wrong with correcting somebody — in a way that's not disrespectful, but just … I'm here to let you know this is actually what I have, this is how I experience it. And it's much more than what you believe it to be.
Lauren: Absolutely. And in terms of your development of self, over those years, particularly from childhood on … because you were encouraged to become your own advocate, do you think that's something that influenced your relationship to yourself in terms of self-confidence … or ability to reflect back and know that your truth was solid, that your mom instilled in you something that enabled you to stand on your own two feet as well?
Jaime: Now, that's a very interesting question. Because of my major depressive disorder, it severely impacted how I saw myself. I still struggle with feelings of low self-esteem and not having a lot of confidence. That surprises a lot of people, just because of the strength and calmness of my voice when I speak, and the humbleness of this internal power I may seem to show. But I am a very scared little girl trapped inside this body. And even though my mother taught me these things, this goes to show how mental illness can really affect how you see yourself … and it's still something I'm working on … I really don't have a lot of confidence, even though I do this every day. I'm always questioning my ability to follow through and get something done. Am I good enough to do this? And is my story even that important for somebody to hear it or want to hear it? I struggle with that. But that's because of the mental illness. And when that happens, I have to go back and say … okay, that's not me inherently thinking that, that is the the negative thoughts that come with depression. Then that ignites the anxiety, which then fuels that worry. And then that vicious cycle starts. So I have to remember to take a moment, take a step back and be like … okay, these really aren't truths, I'm telling myself. Even though it's very rational to the depressive and anxiety little brain, they're not real truths. I have to step back and look at exactly what I have accomplished despite a daily life of pain. I step back and look at my children and how well they've grown up and the adults that they are now, and just how wonderful they are. And I have to step back and look at the fact that my husband has stayed by my side throughout all of this, and has encouraged me and uplifted me, and has not made me feel guilty or blamed me for any of my illnesses. And show myself that that's a reflection of who I genuinely am. It's not all of this negative self-talk that I am so quick to jump onto, that bandwagon, and believe; it is everything else. So, self-confidence is something I struggle with. And I have to do a lot of internal work to remind myself that I do have it. I just have to take a moment and go through the timeline of my life to verify that yes, you do have it, you've shown it, you've exemplified it, and you're good.
Lauren: It sounds to me like you've learned some really amazing coping techniques through mental health support. But imagine someone who didn't have access to mental health support going through something like this. It's amazing what a difference it makes. Because you're still, as you say, a scared little girl inside this strong woman's body. And that you're able to delineate between the rational and irrational is a real gift, because that is a very thin line.
Jaime: It is. Extremely thin. And it takes a lot of practice, and a lot of therapy!
Lauren: I’m with you on that one.
Jaime: Lots of therapy, and I'm grateful that I had health insurance that covered that, and covered as many specialties as I needed. That isn't everybody's situation and I'm very aware of that. I just wish that behavioral health was seen as just as important as physical health. Because getting your physical every year … your mental health is equally as important, if not more important. And should be something that everybody should do at least once a month. Even if you don't have a mental illness, check in with somebody. I just wish that was seen as something that was necessary.
One thing that seeing the naturopath has taught me is that I was putting Band-Aids on arteries years before seeing her.
I needed to take a different approach and to heal not just myself physically, but mentally, emotionally,
Lauren: From a root cause perspective, and spiritually.
Jaime: Yes, and however you connect with the greater universe, it's important to rectify that relationship and become one with that. And really enforce that connection; it's really important. So I am a huge proponent of holistic, true holistic healing, and treatment. I just wish that was something that health insurers really validated and incorporated.
Lauren: We'll get into that in a minute, too! I was wondering if you could also walk us through … obviously, as you've said, you've made some lifestyle adjustments to work around your symptoms and potential triggers of your symptoms. I'm wondering what a typical day looks like for you. How are you balancing the demands of work and life, as you manage potential chronic pain and depression and anxiety?
Jaime: Well, I get to work from home, because I've been on disability for quite some time, because I just can't maintain a normal 9 to 5.
Lauren: Well, you say normal, but the expectation of 9 to 5, it's actually harming more of us than not, isn't it.
Jaime: True, very true. But my typical day is … my alarm goes off at 8am, and no matter what, I'll get up the regardless of how I'm feeling. The first thing I'll do after I wash up is, I'll make my cup of coffee, I'll put the dishes in the dishwasher away. And I'll sit and have 15, 20 minutes to myself. After that, I try to carve out four hours in the day to do my work. Once that four hours is up, I'm done. I'll just put it aside, and I'll deal with it the next day. If within that four hours, my pain starts to creep up or I'm starting to feel feelings of depression flare up, or the anxiety is starting to become a bit more increased and I’m realizing, okay, I need to take some self-care moments here … I’ll close my laptop, put it aside, and I'll do something for myself. Whether that's watching my favorite movie, or going to the pool with my daughter, sitting by the poolside and getting some sun and getting in the pool for a little bit. Or we'll go to Target, walk around with our masks on.
Lauren: Now that's a new thing, the COVID mask situation!
Jaime: I'll make sure to do something for myself, no matter what that is.
Jaime: Self-care is very, very, very important. I try to spend as much time as I can with my kids. They’re 22, 19 and 18. They all live at home with us still. We'll break out a board game or play a game of Uno or something, or they'll help me make dinner in the kitchen. So, that's usually what my day is. I go on despite the pain. But if it starts to become burdensome, I am okay with not being okay. It's not the end of the world. And there's always tomorrow. I can put what I'm doing aside. And the beautiful thing about working in the arena I work in, everybody around me understands that, and they don't expect me to be this plowhorse that's going to power through everything. So the expectation isn't demanding at all. I can kind of make my own timeframe for things, but I just do what I know I can do.
And if I'm not able to achieve that in any particular day, that's fine. I can do it the next day. I don't do more than I can.
Because that's not beneficial to me; that's only going to create more pain for me, and discomfort. And then I'll be just completely out of commission for two or three days after that — and that's not worth it.
Lauren: It sounds like you're doing all you can to keep stress at a minimum. Because stress is a major trigger, too.
Jaime: Yes, it is. It’s not helpful at all. And stress is going to come because it's life and we can’t avoid life and unexpected things happen. All the time. So if I can minimize as much as I can the things I can't control, I'm going to do that.
Lauren: So you mentioned that when you were younger, and as you've dealt with various health care practitioners moving through the system as an adult, you've had experiences where people have denied the existence of your diagnosis because they couldn't see it. I'm wondering if you could share with us any anecdotes about times when you were confronted and forced to justify or validate the existence of your pain, to people who didn't understand it because they couldn't see it? How did those situations manifest for you?
Jaime: Oh, a very unique situation I always like to go back to … I really haven't had any healthcare practitioner not believe I was in pain. But I've had plenty ask me if I was doing enough about my pain. And I hate that question.
Lauren: Right, because it puts all the responsibility on you.
Jaime: Or it just implies that I'm not doing everything I can to get better. And I usually get that question in Urgent Care. There's this one particular doctor who I saw a few times at this Urgent Care. I don't think she liked me. I have what I call my migraine binder. In my binder, I have my protocol from my headache specialist — it's written on letterhead, and it gives a brief synopsis of my diagnosis, what I've taken in the past, what has failed me, what I'm currently on now. And when I use my rescues at home, but they fail, my next step is going to Urgent Care. And these are the medications I would need, and the doses to bring me back to my baseline of 2.
Lauren: So all anyone has to do is look at the medication, prescribe it, and Bob's your uncle.
Jaime: Yeah, but there's quite a bit on there, so it scares people. Now, there are no opioids on there. So it really shouldn't be that difficult. But the amount of stuff that's on there, I have to get quite a few things. Because I'm intractable. And you have to give me quite a big punch to bring that pain down.
Because by the time I come into Urgent Care, I've been dealing with this high-level migraine for at least two weeks.
It scares some doctors, though. But I don't know … she didn't like my binder, maybe because it looked like I thought I knew too much, or I knew more than her; not all physicians or health care providers like a very informed patient. That particular time was my third time there, because just nothing was helping. And she was, like, ‘Well, this is like the third time you’re here. Are you’re doing everything you can for this migraine?” And basically my whole story I just gave you … I told her everything I’d done. If my insurance would cover X, Y and Z, I wouldn't be in your Urgent Care. And then she was like, “Okay,” and she took my protocol and filled it. Why did I have to do that? Why are you questioning me about what am I doing? I've had surgery, I had a neuro-stimulator implanted in me. I had that for five years; worked for two, didn't work for three, but I kept it in there to just give it another chance. I've done so many things. I’ve paid out-of-pocket for so many things. I should not have to sit there and validate everything I've ever done to make you feel comfortable enough to give me my protocol — that is written up by my headache specialist who specializes in headache medicine, which you do not, in order to fulfill this treatment for me.
Lauren: Yeah. And to take me seriously.
Jaime: I was so angry, and my husband was, like, “I think you were a little bit too hard on her.” I said, “No, I wasn’t!”
Lauren: And you were also in pain! That’s the thing, doctors are dealing with people who are already under duress because they're in pain or otherwise. So not taking patients at their word is one way to make people even more frustrated. You’re going to be dealing with an ornery patient when you do that.
Jaime: Yeah, and I have to be very careful about my response because I can come up as an angry Black woman. And that's another barrier that a lot of people …
Lauren: Yeah, I want to talk about this. Because this idea of the angry Black woman … I'm wondering about how much of these experiences that you've had with doctors like this, who won't validate you immediately, have potentially had to do with either gender or racial discrimination. We hear this idea of the angry Black woman, but if you were a Black man, you might not be considered the same. If you were a white woman or a white man … I wonder if your circumstances would be different if you presented differently than you do as a woman of color. Do you think that perhaps that's true?
Jaime: Oh, absolutely. If I was even a Black male, I would be prescribed an opioid probably more quickly than as a woman of color, just because of the gender difference, right? Men are prescribed pain medication way more than women are … because women are hysterical … it’s all in your head. We’re misdiagnosed as having mood disorders, given Prozac or some type of antidepressant … “Go and take this and stop being so stressed.”
Lauren: Like, I already know I have a mood disorder, thank you.
Jaime: Right. Definitely there's that. But especially when it comes to migraine, because it's classified as a women's issue and women are historically seen as creatures of hysterics, it’s a lot harder to validate your pain condition in the healthcare environment.
And then as a person of color, we're seen as people who don't experience pain the same, or just don't experience pain at all.
So, it's extremely frustrating. And then I have to be very conscious of how I show up. When I go to Urgent Care, I want to be in my pajamas and my slippers, but I'm afraid to do that because I don't want to be dismissed because of how I look physically. Even though it shows and represents how I feel internally, because I feel that bad that I can't put clothes on. But I get fully dressed and I fix my hair so I really don't look like I'm in pain. I'm just afraid of being completely dismissed based on how I look physically. Or maybe classified as somebody who is of low socio-economic status and doesn't have insurance. I shouldn't have to do that. But I'm consciously aware of that. And consciously aware of the words that I choose, of how I speak. I have to be calm. As much as I get disrespected, I stay calm. I try to take a breath and try to answer things to just make sure that person knows I'm extremely educated in what I'm talking about. I do this every single day. This is my job. I know more about my disease than you do. But it's exhausting.
Lauren: And it's a stressor, which can make your pain worse.
Jaime: Yes. It just begs the question. How many white women have those thoughts before going to Urgent Care, to their doctor? Do you really think about how you look? Do you really think about how you're going to sound when you answer questions?
Lauren: The difference is that an angry Black woman is an hysterical white woman. The white woman isn't called angry, the Black woman is. That these same states of behavior have different labels depending on your race. Which really demonstrates this inherent bias in the system.
Jaime: Oh, there’s so much bias. It's crazy. But that’s just another layer of things I've had to deal with. I've had another neurologist — actually the neurologist, who gave me my Botox injections — who basically blamed me for my pain. He got fired that day.
Lauren: That's good. But this is the other thing … you’re an advocate, so you know that you can move on to the next doctor because this doctor wasn't for you. But not everyone knows that.
Jaime: Oh, yes. We feel like we are indebted to our physicians, when they actually work for us.
Lauren: Thank you.
Jaime: We are in charge of our own health and our health care and how we see our treatment going. And it is a 50/50 relationship. It is not a dictatorship.
Lauren: It’s a partnership.
Jaime: It is a partnership. So if this physician is not willing to work with you, you can fire that physician. If they do anything that discriminates against you, you can file a complaint. Which I did with this neurologist because he flat-out lied to me; he gave me false information about Botox and CGRPs [calcitonin gene-related peptides] and killing people. And that wasn't the case.
Lauren: So he had a problem with Botox, then.
Jaime: Yeah, he didn't want to give it to me.
Like, if you just don't want to give me the Botox, don't give it to me. Don't lie to me about it.
But he didn't know who I was and how educated I was, and that I actually knew reps from the pharma company that makes and produces Botox. So okay, that's fine. You can say what you want to say. But I made a complaint, got my $20 co-pay back because I got no services that day — and he got fired. You have all the autonomy in the world to take care and manage your health care, not your position.
Lauren: Absolutely. So well said. And would you also say that this racial and gender inequality discrimination … I mean, outright racism and misogyny that we've seen in the healthcare system … would you say that this is a public health crisis?
Jaime: Absolutely, it is. There are so many health care disparities that affect access to care, utilization of care, and available treatments. Even when it comes to marketing, how it's targeted, there are so many groups of people who are completely missed — because usually we're talking about people who have insurance. What about the underinsured or the non-insured? And not everybody has access to technology.
Lauren: Or to information, for that matter.
Jaime: Exactly. And we're completely ignoring people that utilize community health centers. Not everybody sees a private physician, or has this big HMO. So, it’s definitely, biased. It is a public health crisis. And it is because healthcare is seen as a luxury in this country, and not a right. And until that changes, many people are going to be left behind in the healthcare system.
Lauren: And that's going to have to be an entire mindset shift, which is what we're trying to enact with these tellings of patient stories. I'm also wondering about your advocacy work. I would love for you to share with us how you started The Migraine Diva, how you have educated yourself as an advocate, and also paid it forward to the community. Talk to us about that.
Jaime: My blog came about because I felt extremely alone in my diagnosis with chronic migraine and chronic daily headache, daily persistent headache. I didn't know anybody that had any of those diagnoses. And even though I had a wealth of support around me, nobody was experiencing pain like I was. I just needed to be around other people in the migraine community. And since I have a background in writing, and I learned about this thing called blogging, it was, like, well, I'll start one and see what happens. The whole point of it was to just be very transparent and share my story. But also use it as a platform to help dismantle the stigma around migraine and headache, and also the stigmas around mental health and mental illness. Because that was also a big part of my life. It was just as chronic as the migraine was. So it was important for me to be very open and honest about both, but that it wasn't a reflection of who I was as a person. And it introduced me to a group of wonderful people, a wonderful community that I didn't know existed before that. I think that saved my life in many different ways. I felt like I had a place where I could be myself. I didn't have to explain anything. They just got it. I could just say, “Oh, I'm feeling this. I'm feeling that.” And they’d be, like, “Oh, I know. I know. I felt that way, too. I deal with that, too.” Just not having to always explain what migraine is, and having people give me unsolicited medical advice all the time — which is another part of having chronic illness.
Lauren: Major pet peeve. Believe me, I've tried yoga!
Jaime: Yeah, or increasing your water intake.
Lauren: That’s a good one, too.
Jaime: Yeah. But that was just a great door opening for me. And a few years into writing my blog, I got an email from a marketing company which worked for tele-pharmaceuticals. And they were putting together a panel for the BlogHer conference in 2016 in LA ,and it was their More to Migraine campaign. And they asked if I could be on the panel as a patient advocate. And I was, like, oh!
Lauren: Amazing. BlogHer is a wonderful organization.
Jaime: It is. And I was, like, this is huge. I didn't even know I was a patient advocate, but okay!
Lauren: I think that happens to so many of us, we start just sharing in order to find community, and we accidentally become advocates — and it saves our lives, you you said.
Jaime: That's exactly what happened. They just found my blog. They loved it. And I mean, my blog had, at the time, like 43 followers, you know, and I was, like, okay, this is so weird. So that was the first time I did any kind of advocacy work in sharing my story to a roomful of women who didn't openly share that they had migraine.
When we asked the question, “How many of you have migraine?”, 95% of the hands went up. It was just such a fulfilling moment.
And there were other people in the room who took to my story and my candor, and it just led to other things. It's been like a whirlwind ever since; it was not my intention when I started my blog. I just wanted to be a part of a community. And I wanted to do my part in dispelling the stigma, because it affected me my whole life. And the fact that it brought me to this space where I could not only get stronger in being an advocate for myself, but use my voice to advocate for others who hadn't found theirs yet, is extremely gratifying. And it's given my pain a wonderful purpose.
Lauren: Oh, that's so beautifully said. Absolutely. Just to pivot back to the healthcare system, because the work that you're doing as an advocate is an addition to the health care system, right. It's providing a service to so many people and to yourself, that's not provided by our current health care system. You've been in the health care system since you were a kid. Do you think that there are ways in which it's working for us here in the US? Because we know that there are ways in which it's falling short with bias, lack of belief, lack of access, which you mentioned — people who are insured, or uninsured and are using community health centers. But if we look at it in balance, in what ways Is it working? In what ways is it not working? You're allowed to say if it's not working at all!
Jaime: I was pondering that question for at least 10 minutes. If I'm completely honest, I don't think it's really working. Honestly, it only works for you if you have access to it. And that really isn't that many of us in this country. Thanks to the Affordable Care Act, more people have access to the public health care system.
Lauren: But of course, that's constantly under threat.
Jaime: It is.
Lauren: Adding another stressor for patients.
Jaime: Yes, but my honest opinion, it really doesn't work. Not really, because there are too many things wrong with it. There are too many barriers in place that hurt patients and hurt the doctor/patient relationship. Health care is a for-profit industry. It is not about the overall health and well-being of people. We are seen as numbers. And until that shifts and changes, it will be a broken system. It continues to be a broken system. I can't say there's anything working for it right now.
Lauren: I am clapping you so many times over in my head right now! Yes, yes, yes, absolutely! I have a couple of Top Three lists. I was wondering if you can give us your Top Three Tips for someone … maybe they suspect they've got something off? Maybe they're diagnosed with a chronic pain condition? What would your Top Three Tips be for someone who's living with invisible illness like you are?
Jaime: Top Three Tips. Like, how to get through it?
Lauren: Even if you were talking to your younger self, what would your top three pieces of advice be?
Jaime: Okay. Number one, you are not your illness. Number one, you are not your illness. Number two, You still have value.
Lauren: Yes! You're nailin’ it!
Jaime: Number three, your new normal is just as acceptable as your old one.
Lauren: it’s just a little bit of a mindset shift sometimes, isn’t it. Such good advice. What about … and this one's my favorite of the Top Three lists … I want to know what the Top Three things are in your life that give you unbridled joy. We know that you've had to make lifestyle adjustments because of your diagnoses. And because you've taken a root cause approach, particularly with the fibromyalgia. But I want to know three things that you're unwilling to compromise on. These can be guilty pleasures, secret indulgences, comfort activities, especially if you're having a high pain day. But three things that light you up, that you turn to for joy.
Jaime: Number one will always be my children. Always them. I remember when they were younger, just laying quietly in my bed during a really bad attack, just to be close to me. To help lower my pain a little bit. They will always be my number one.
Number two would be my husband. Because he taught me the greatest lesson. And that was my number one tip — that I am not my illness.
And it is okay not to be okay. Number three would be The Lord of the Rings. Because I cannot get through any bad migraine without that trilogy, or the book, which I've read I don't know how many times. I have to have that in my life. I would never give that up!
Lauren: I love that. Because it's a real fantasy. There's so much in those stories that is not of our world the way we know it. And it's a real escape, isn't it, those stories.
Jaime: Oh, it is. Every single time I've watched it. I don't know how many times.
Lauren: Those movies are so great. They're so immersive.
Jaime: Yeah, I mean, I know them verbatim. That’s how many times I’ve watched them. So it’s definitely a problem! (laughs)
Lauren: It’s not a problem. I think that's awesome. So what is your ask for listeners today? What can everyone who's tuning in today do to support you and your community in your ongoing work?
Jaime: What people can do to support the headache and migraine community is … just become more aware of the diseases and the different headache disorders there are, and how severe they are, and how much they impact Americans. And how truly disabling, especially migraine and cluster — those two, particularly — are. We need as much help as we can to bring more eyes to the egregious lack of funding that headache disorders receive from the National Institutes of Health. So if we can get more people to donate to the Alliance for Headache Disorders Advocacy, which puts on the Headache on the Hill event every year … which is probably the largest scale advocacy event I've ever participated in. Where we go to DC and we lobby our congressmen and representatives with a specific ask every year for changes. But for the most part to raise funding, or increase the funding, for headache and migraine disorders, as well as chronic pain overall. Because it's so misunderstood in this country. Donations to that would be great. Participate in a Miles for Migraine education day, or go to an event to support someone that you know and love that has migraine. And just be more empathetic and sympathetic when it comes to migraine. I hate saying this, it’s so cliche … it's so much more than a headache. You don't have to experience head pain to have migraine. There are so many other disabling symptoms that go along with it, including cognitive impairment, which is one of the more serious symptoms that I deal with.
Lauren: Brain fog and stuff?
Jaime: Brain fog, memory loss; I lose my words, aphasia is a big thing. I can be in the middle of a sentence, and my mind goes completely dark and I have no recollection of what I was trying to say. It happens to a lot of us with chronic or intractable migraine. It's very frustrating, and it impairs your ability to drive to an extent because your processing of information is slower so you don't trust yourself behind the wheel. But just become more aware, and support those patient organizations and advocacy groups. Like the Headache and Migraine Policy Forum that pushes those advocacy issues that affect patients and patients with migraine and headache; it's really important. Do a little bit more research, and support those around you that have headache and migraine, and do a little bit of education.
Lauren: What’s next for you in your advocacy and wellness journeys?
Jaime: Well, for advocacy, I have a huge thing coming up. I am a partner with the Coalition for Headache and Migraine Patients (CHAMP) as one of their Patient Opinion Leaders. We are currently working on an issues brief to determine what the racial disparities are in headache and headache medicine.
Lauren: Wow, that's amazing.
Jaime: I would be the lead author on this white paper.
Lauren: That’s incredible! Good for you.
Jaime: And the purpose of this is to hopefully launch my new non-profit, which will aim to address disparities in communities that are adversely affected by migraine and headache. Usually that will be low socio-economic communities, people of color, indigenous people, those who are incarcerated, immigrants.
My goal is to look at and help those communities who often are overlooked because I'm usually the one chocolate chip in the whole cookie when I'm in the room.
I'm always addressing and bringing up this issue. So my goal is to start my own non-profit to hopefully help those who are underserved. And eventually grow it to a point where it is all people of color, all BIPOC — Black indigenous people of color — regardless of your socio-economic status, who are adversely affected by health disparities in this country.
Lauren: That’s incredible. We'll have to have you back on the show when you're launching the non-profit.
Jaime: Sounds good. I can’t wait. Yeah, it’s exciting work. I'm just really excited for where we're going in headache and migraine.
Lauren: That's so exciting. I’m really thrilled for you, Jaime. It has been such an honor having you on the show today. Can you also briefly share with everyone where they can find you and your work?
Jaime: Absolutely. So my blog is The Migraine Diva; you can find it at TheMigraineDiva.com. I am on Facebook; you can find me at The Migraine Diva. And Instagram and Twitter, my handle @MigraineDiva.
Lauren: Amazing, Jaime, it's been such an honor speaking with you today. Thank you so much for taking the time to talk to us, and to share your journey with us. I am so excited for what's next for you and for what's next for so many of the underserved in the headache and migraine and chronic pain communities. We need more lights like you in the world, carrying the torch and bringing equity and justice to all . So thank you so much, and we look forward to talking to you again soon.
Jaime: Thank you so much. It was a pleasure speaking with you, I had a great time. I look forward to our next conversation!