Healthcare Access & Affordability: A Conversation With Jaime Sanders

Nora McInerny:

Life sometimes has a way of blindsiding you with a feeling of being overwhelmed at the worst possible time. That's why you have your self-care, your coping strategies. That's why you have us.

I'm Nora McInerny and this is The Head Start: Embracing the Journey, a podcast where we'll be taking all those things you usually save for your friend group out into the open so we can all find a bit of optimism. For those battling Chronic Migraine, these conversations are going to be even more helpful and relatable so definitely stick around.

This show is brought to you in partnership with AbbVie. So first, let's hear some important safety information and stay tuned to the end of the podcast for more.

Indication: BOTOX^® (onabotulinumtoxinA) is a prescription medicine that is injected into muscles and used to prevent headaches in adults with chronic migraine who have 15 or more days each month with headache lasting 4 or more hours each day in people 18 years and older.

It is not known whether BOTOX is safe and effective to prevent headaches in patients with migraine who have 14 or fewer headache days each month (episodic migraine).

Important Safety Information: BOTOX may cause serious side effects that can be life threatening. Get medical help right away if you have any of these problems any time (hours to weeks) after injection of BOTOX:

• Problems swallowing, speaking, or breathing, due to weakening of associated muscles, can be severe and result in loss of life. You are at the highest risk if these problems are preexisting before injection. Swallowing problems may last for several months.
• Spread of toxin effects. The effect of botulinum toxin may affect areas away from the injection site and cause serious symptoms, including loss of strength and all-over muscle weakness; double vision; blurred vision; drooping eyelids; hoarseness or change or loss of voice; trouble saying words clearly; loss of bladder control; trouble breathing; and trouble swallowing.

Please see additional Important Safety Information, including Boxed Warning, within this podcast or on the website below.

Nora McInerny:

Hello and welcome back to The Head Start: Embracing the Journey. I'm Nora McInerny. Language has an immense power to it. It's a tool for understanding each other and it also leads to a lot of misunderstanding. So, do me a favor, think about a time in your life when you were going through something hard. Think about all the things people said and did that made you feel seen and heard and supported.

I am willing to bet that none of those experiences that you're thinking of included someone saying, "Well, it's just..." There's something about the word "just" specifically that tends to just suck out all of the empathy from an interaction. It's an automatic minimizer. It's a way to kind of gloss over what is happening and rush to a solution that might not actually be that helpful for the person you think you're helping.

And when the person you're talking to is experiencing Chronic Migraine, minimizing their experience is not only unhelpful but harmful.

Today's guest is a writer, an advocate, and a woman who has been living with Chronic Migraine for most of her life. Jaime Sanders has made it her life's work to bring more appropriate language and awareness to talking about Chronic Migraine.

And as you probably know, I am not a doctor, but we are joined every episode by my friend Dr. Christopher Rhyne.

Dr. Christopher Rhyne:

Hey Nora, what's going on? Excited to be here to chat with you a little bit about Jaime's story.

Nora McInerny:

Same always. So, Dr. Rhyne, you and Jaime are both vocal advocates for breaking the stigma surrounding Chronic Migraine and migraine disease. How can the rest of us step in and support this work? Is there specific language we can use that helps us understand the migraine community more?

Dr. Christopher Rhyne:

Yeah, there is really great language that I think we can turn to. First, we want to talk about the correct use of definitions because these are super important not just to describe the things correctly that they're experiencing or that maybe we're seeing clinically, but also to show respect for what people are experiencing in terms of particularly the disability that migraine brings.

Migraine is a central nervous system disorder. And a lot of people brush it off which shows that they don't fully understand what migraine attacks are if you refer to their experience as just a headache.

Again, Chronic Migraine is 15 monthly or more headache days where eight of those days meet the criteria for migraine. And those headaches need to last for four hours or more, less frequent would be considered episodic migraine. In terms of treatment, there are a couple of words and definitions to know. Acute and preventive treatment are really the two different categories that we want to think about.

So, acute treatments are often used to treat a migraine attack when it's occurring right then. Some of those medications are available over the counter and some are prescription medications. And then preventive treatments are taken on a schedule. And these helps prevent the attack before they start.

Nora McInerny:

Thank you, Dr. Rhyne. Now let's hear from today's guest, Jaime Sanders.

All right, Jaime, I like to start by asking a question that is truly unimportant to you anything except my own curiosity. Have you seen any good movies recently? Doesn't have to be new.

Jaime Sanders:

Well, the last thing that I watched that was excellent was the series with Sofia Vergara. She was wonderful in that. And the remake of The Color Purple, that was really good as well. I saw it at the Kennedy Center in DC when Fantasia was playing Celie.

Nora McInerny:

Oh.

Jaime Sanders:

And so, that adaptation is just so wonderful with the music and everything. And my daughter and I went to see it in theaters in December. So, those two I would highly recommend.

Nora McInerny:

Okay, good. So, Jaime, you have had a very long journey with Chronic Migraine, and you've advocated for yourself, you've advocated for others, and one thing that I would love to get your perspective on is how your father was so well positioned to advocate for you. Can you tell me more about that, his role in the community, the importance of community healthcare centers?

Jaime Sanders:

Absolutely. I am so privileged to have been able to experience community healthcare. But my father, having a unique experience being from Jamaica, being an immigrant coming to this country in the early 70s, you know, his perspective was very different. Coming into this place where one, coming from a country, from an island where everybody is a Jamaican, regardless of what you look like, coming into this country where he was first identified as a Black man and being treated differently. That was culturally shocking for him, but it was important for him and the other executives that founded this health center in the Bronx, that even though they are people of color and the community that they serve are people of color, that there should be a rainbow coalition of people working there, not just in the executive positions but janitorial and administrative and as well as the healthcare providers there. And having that experience and my father really being a strong advocate for people having a voice and people having equitable care, that really trickled down to me and my sisters. That goes to my father's persistence of making sure that all the bases were covered.

Nora McInerny:

Jaime, can I ask you, for people who aren't familiar with, like, the concept of a community healthcare center, can you define that for our listeners?

Jaime Sanders:

Absolutely. So, these are typically centers that run independently but are usually funded with federal grants. And they serve, it's usually small communities. So, if there isn't, say, a large hospital center in a certain community and people who may not have access to commercial health insurance and may be on Medicaid or state-run health insurance program, they're usually be seen at a community healthcare center. Some of them are free cost or low cost or on a sliding scale, but most of them take people in regardless of their ability to pay and they will have people there to help enroll people in these state-run health insurance programs so that they can have coverage in the future. And so, it's really based on really serving the community and the community's needs.

Nora McInerny:

Thank you so much. That's so helpful.

Dr. Rhyne, I would like to take a minute here in the story to address a topic that we discussed in season one and that is the disparity in Chronic Migraine care for marginalized communities. Can we start with the breakdown in the numbers?

Dr. Christopher Rhyne:

Absolutely. It's estimated that there are about 39 million people in America living with migraine, and of that 4 million are living with Chronic Migraine. That's based on estimates because many people with migraine go underdiagnosed or undiagnosed and don't come forward to seek therapy. That's where disparities start to show up in the numbers.

There is a lack of data associated with Black women or men who have Chronic Migraine because so many people are underdiagnosed, undiagnosed or not coming forward for support. So, according to the American Migraine Foundation, among people living with headache, only about 46% of Black people seek help from healthcare providers. So more than half of that community isn't seeking any care.

Nora McInerny:

So, this is a huge disparity. What is going on here?

Dr. Christopher Rhyne:

Yeah. I think the big question is why? Right? Why is there such a gap between those folks that are needing care and the folks that are coming forward to seek that care? And I can only speak from my experience here, but there are many of my patients of color who have distrust in the healthcare system, and the way they've been treated in the past, their perceived experiences in their communities, maybe even with their own family members.

And so, if they believe they're not going to be believed, why would they come? Why would they ever show up in the first place? And so, I can understand the position that they come from. The next question then that comes to mind for me is, what can we do about it? And that's where I can hopefully come in and try.

I allow my patients the space they need to describe their Chronic Migraine experience, the symptoms that are associated with it and build that trust and hopefully show them that it's a safe place for them to come and to share what they're going through and to expect that I'm going to believe them and support them in what we're going to do.

Nora McInerny:

All right, back to Jaime. You mentioned earlier just facing stigma for this Chronic Migraine diagnosis. How has that weighed on you emotionally and who did you turn to for support?

Jaime Sanders:

So, I faced stigma on many different levels. The first instance of me dealing with stigma was when I was younger. I was always affected by the environment around me, so with the harsh lighting, the horrible fluorescent lighting of like the 1980s, it was terrible. These really old, old buildings in New York City that smell really mildewy and musty.

Nora McInerny:

You're painting a picture, baby. You are. What were they washing the floors with in these buildings?

Jaime Sanders:

I don't know.

Nora McInerny:

Because the smell of that..

Jaime Sanders:

Yeah, there was just a lot going on at the same time. Physical exertion was a trigger, still is a trigger for me. I wanted to be just like my friends so I would push through. I didn't want to feel left out. But then I would spend the last half of the day just miserable. And just not really having an advocate for me in those moments all the time was really lonely and really isolating.

It was exhausting because I don't think it really penetrated people's boundaries of sympathy and empathy and compassion enough to where I felt completely covered in support in those times. What that taught me was to just kind of hold all of that in and push through, which a lot of people with chronic illness do is, "Just let me just push through this until I can’t anymore, where I can finally kind of just give into it."

And so, it taught me I had to rely on myself. And that's not a good habit to form, but it was one that was formed out of survival and just necessity in order for me to get through the day. The impact of dealing with that stigma and that internalized stigma of, "Nobody else cared, it's not that important. It's not that serious. Just get up and do it," has caused a level of exhaustion for me now and burnout that I never thought I would be feeling.

Nora McInerny:

Jaime, that's something that I'm so glad that you said because that is not something that I've heard someone say yet on this show, which is like the cumulative effects of pushing through. And even just to hear you say, like, giving yourself grace for the fact that you have been carrying a lot for a long time, so of course you're exhausted, I think is really powerful. It was powerful for me, so thank you for saying that.

Jaime Sanders:

Oh yeah, I appreciate that. Because it is a, it was a powerful moment for me to sit in that and lean into it. We're always told to lean into the softness as women, right? Into that soft life. Well, this is part of that soft life. I don't always have to show up and be tough and superwoman all the time and that's okay.

Nora McInerny:

I have learned so much from making this show, so much about what it can be like to live with Chronic Migraine. So, I like to give our listeners examples from our guests, but if you can think of a moment, a particularly difficult memory that stands out and help listeners see inside of this story. So, a moment of Chronic Migraine in your adulthood, what was happening leading up to it and what you felt in that moment?

Jaime Sanders:

Okay. So, this is a pretty sensitive subject for me. My kids were still very young. My kids are adults now. But hmm, just the pressure and the weight of this disease, hmm, it’s feeling like a burden, that was the biggest thing. Just a burden to my family, especially to my husband who has gone through this journey with me. We got married really young. And at the time, I was still episodic, and so he went through this journey with me and hmm, this is not what he signed up for, even though he's an awesome caregiver, but that's not the role I wanted for him.

And having this really highly stigmatized, difficult to treat disease was just overwhelming for me. But my perspective started to change about living with this disease. And that then created this place for me where I could acknowledge everything that I've endured and that I've done and started to look at life very, very differently to where it was the small things that mattered more.

I started to give myself, you know, a lot more grace and just pat myself on the back for the ability to get up that day and make a cup of coffee and sit on the deck, taking joy, finding joy in the fact that yes, I can't go to the movie theater, but when my kids were little, we can have a bed picnic and rent a movie and just sit on our king-size bed and enjoy time together. Like, trying to find the positives within a very stigmatizing disease and stopped personifying my symptoms.

Nora McInerny:

Ooh..

Jaime Sanders:

They are not a result of my personality or how I show up in the world and really separating the disease from who I am as an individual.

Nora McInerny:

Yeah. I love the “not personifying of the symptoms” because it is really hard when something is happening that is inside of you, right? That is just so linked to your experience as a person not to feel like it is you. But you are not the symptoms. Like, you are not the migraine. You are you. You're Jaime.

Jaime Sanders:

Exactly.

Nora McInerny:

Yeah.

Jaime Sanders:

Exactly. That's a mantra that I created for myself, that I am not my disease.

Nora McInerny:

I love this shift from this Chronic Migraine just sort of enveloping you and then finding these little bits of light, really focusing on the small accomplishments and those small joys. What are some of those small joys and accomplishments that you've clung to?

Jaime Sanders:

Oh my gosh. They center around my children honestly. They're in their 20s now and we're all still very close and thanks to this economy, they all still live at home. So, I get to enjoy them all the time. It is just the memories that we made together. And one of the biggest joys that I have from raising my children with this disease is I was always very transparent with them about my experiences because I didn't show up like everybody else's mom. I, I pride myself in being able to have conversations with them using language that they can understand that, you know, created such compassionate, empathetic adults, and I'm very proud of that. My children are capable adults and are able to sense, you know, when somebody's going through something and hold compassion for them.

Nora McInerny:

Special. That's so special. You are such a good mom I feel. I'm so glad this is how I started my week.

Jaime Sanders:

Oh, thank you.

Nora McInerny:

I really am. I really am. We'll be right back with more from Jaime Sanders, so stick around.

Nora McInerny:

Welcome back to The Head Start: Embracing the Journey. Let's jump back into my conversation with Jaime Sanders. What specifically do you look for in a neurologist or headache specialist?

Jaime Sanders:

The biggest thing I look for is just compassion and empathy. I think that across the board is the biggest quality. That specifically in headache specialty, we tend to, you know, have providers that just exhibit that with their patients. Like, they really feel for their patients. I didn't get that until I started seeing a headache specialist.

Nora McInerny:

I love that.

Let's unpack this idea of hesitation in healthcare and the advice that people are getting. When you notice that a patient who has come into your office might be a bit hesitant, are there certain things you do to try to help them be more open with you?

Dr. Christopher Rhyne:

This is such a really delicate thing to do, and there, I think there are cues that you're going to pick up from, some of their communication and behavior, but when you treat Chronic Migraine patients frequently and for as long as I have, you see how isolated and dismissed they can feel. And this is regardless of race, gender, anything else. And so, it's important to make sure that a person sitting across from you feel seen.

You ask about them, you want to hear their story, you want to know who they are, what makes them tick, what makes them happy, and how you can participate in their health goals in their story. We really want to understand what they're losing because of their migraine attacks. And so, when it's time to invite them to participate in a treatment plan, they know that you care about the things that they care about, so it's important to me that we build that relationship.

Nora McInerny:

The other part that Jaime brings up here is how long it took her to first realize the importance of finding a proper diagnosis. How long is it typically for people living with Chronic Migraine to be seen by a medical professional and then to get a diagnosis and then I guess also work with their doctor to find a treatment plan for that?

Dr. Christopher Rhyne:

In my experience, and really the saddest part for many folks that are dealing with migraine out there, is they rarely if at all, come forward to seek care.

It can take over five years for patients to seek care for headache and migraine symptoms and then receive a right diagnosis.

In terms of finding a treatment plan that's right for them, the process can be really lengthy. It can be months to years once you find a provider who can offer the diagnosis and appropriate therapeutic options. Nora, at the end of the day, we cannot underscore enough the importance of finding a doctor to partner with when you're experiencing Chronic Migraine symptoms.

Nora McInerny:

All right let's get back to our conversation with Jaime.

I think about your Chronic Migraine journey and the fact that your father, you know, created this system of support for an entire community, and you have also moved into advocacy as well. Tell me about that calling that you have in building trust and education and community around this experience.

Jaime Sanders:

Oh, yes. Community is the key word there for me. Because when I started my blog in 2011, it was just for that purpose, was to build community around myself. Because regardless of having great support from my husband and my close friends and family, I didn't know anybody who had Chronic Migraine. Even though migraine runs in my family, I'm the only one diagnosed with Chronic Migraine, so it's still a very isolating and lonely place to sit in.

And I loved to write when I was younger, I wrote a lot of poetry and short stories, so writing is just a way for me to express myself. And so, I was like, "Well, you know what? Let me just start this online diary just to talk about what life truly is like living with this disease and maybe I can find other people like myself." The blog really was a starting point for me to talk about in a really transparent way about how Chronic Migraine affected me.

And also, as a woman of color, as a Black woman, we don't really talk about our experiences on that level. And growing up in my family, we really didn't talk openly about struggles, and I wanted to, you know, break that door down. I really had no clue of what advocacy was when I started this blog. It wasn't an end goal. I just wanted a platform where I can speak openly and honestly about my experience and maybe some people will follow my journey. It's given my struggle a purpose and that's really important to me.

Nora McInerny:

Yeah. Thank you, Jaime. That was really beautiful.

Jaime Sanders:

Thank you. Thank you so much.

Nora McInerny:

Dr. Rhyne, we have talked a good amount in both seasons about advocacy, but somehow have not really talked about what sounds like the most important advocacy moment of the year for people living with Chronic Migraine, Headache on the Hill. What exactly is Headache on the Hill and why is it so important?

Dr. Christopher Rhyne:

So, this is a day every year when a group of patients, doctors, healthcare workers and advocates get together in Washington DC to talk directly to Congress and advocate for change in headache policy. It seems to be really effective to do this as a group altogether so the government officials hear from everyone involved, patients, doctors, advocates, and can discuss specifically Chronic Migraine.

Nora McInerny:

So, one thing that goes hand in hand with advocacy is the conversation about affordability of healthcare here in the US. How big a factor is this for your patients and how do you help them find treatments that work for them that they can afford?

Dr. Christopher Rhyne:

There are so many hurdles to get people in to see the doctor and to get diagnosed, but affordability is probably one of the biggest hurdles and one of the most complicated. A couple of years ago, a survey came out showing that 44% of Americans are struggling to pay for their healthcare. After receiving a prescription, patients should research the specific qualifications for manufacturer direct medication savings programs, which are in place to help bridge the medication costs. So, these are tremendous barriers to seeking out that care. We do our best to work around people's schedules, to work with their insurance companies as best we can, and it's all part of establishing that trust that we've already talked about today and then listening to the individual's specific needs in each one of these situations.

Nora McInerny:

Dr. Rhyne, always great to talk to you.

Dr. Christopher Rhyne:

See you, Nora. Thanks, bye.

Nora McInerny:

I loved this conversation with Jaime for a lot of reasons, and one of them was the language that she used to describe her journey with Chronic Migraine. It is easy to tell that Jaime is a writer, and it felt like I was hearing her writing process out loud. And as Jaime was speaking, I found myself grabbing my notebook and writing down things that I wanted to remember and revisit for myself and also for you. Here's what I wrote down. She is not Chronic Migraine, but a person experiencing it.

It is okay for her, for any of us to feel exhausted by things that are exhausting. Showing up does not mean showing up perfectly and finding joy in the smallest things can create a bright light in the darkness. These are great things to remember and to remind each other of no matter where you are on your journey, because even on your worst days, you are more than migraine. If you'd like to read more of Jaime's writing, you can check her out at The Migraine Diva.

If you haven't found a Chronic Migraine treatment plan that is working for you, please do reach out to your headache specialist to explore your options. I truly hope this has helped you find a bit of comfort and maybe a smile, maybe? See you next episode and stay tuned for more important safety information.

The Head Start: Embracing the Journey is hosted by myself, Nora McInerny and executive produced by Yvonne Sheehan. Our EP of post-production is James Foster. Our supervising producer is Ciara Kaiser. Our writer is John Irwin, and the show is mixed by Nick Cipriano for BANG Audio post. Original music by Soundcat Productions and Artlist.