Sarah Lau isn’t your typical 30-year-old-mom. Diagnosed with a range of health issues in her teens, including generalized anxiety disorder, IBD, endometriosis and OCD, Sarah has spent much of her life in doctor’s offices and emergency rooms. Because of this, Sarah says, she, her husband and their two kids live “in forced poverty in order to have Medicaid”. Both of Sarah’s pregnancies were described by her doctors as miracles, and both took a heavy toll on her body. Now diagnosed with Ehlers-Danlos Syndrome (EDS), Sarah is on a 3-year waitlist to find out how dangerous her condition is.
The National Institute of Health defines EDS as “a group of disorders that affect the connective tissues that support the skin, bones, blood vessels, and many other organs and tissues”. The three-year wait period is especially precarious, as the symptoms of EDS “vary from mildly loose joints to life-threatening complications”. While there are many hospitals she could go to, the one with the longest wait period is the only institution that accepts Medicaid.
Meanwhile, the AHCA, which would cut the Medicaid budget by 25% over 10 years, endangers the lives of millions of Americans who, like Sarah, rely on Medicaid in order to survive. For the bill's proponents, the care that people receive through Medicaid is a luxury that can be retracted in times of austerity. But navigating Medicaid as it is now is a full-time job for people like Sarah, and her quality of life is already severely restricted.
We sat down with Sarah to talk about the difficulties of being a Medicaid patient, the consequences of the increased stigma and regulation of opiates for her as a poor, disabled person, and the ways in which National Improved Medicare for All would benefit her family.
Brittany: Tell me more about Ehlers-Danlos Syndrome (EDS).
Sarah: I’m in a wait to get typed. There are six different types of EDS and I fit the clinical criteria for 3 different types. One of them is bad, potentially fatal, so I have to get tested soon. It’s the vascular type, where veins and arteries can spontaneously rupture, as well as organs. My grandmother had her first aneurysm at 38. I’m 30 now.
The only hospital that accepts my form of Medicaid is GBMC. And the top doctor in the world for EDS is at GBMC hospital. Here’s the thing: it’s a 3-year wait. You apply for an appointment and they call you in a year to schedule your appointment. It’s a 30-page application. I have a friend who applied in September of 15, got the call in December of 16, and then her appointment is in 2018.
University of Maryland could fit me in a month, but my insurance isn’t accepted there. At Hershey, I found out that they could fit me in and they do accept my insurance but it might not go through because there is another hospital in Maryland that offers the same treatment. Right now, I’m working on finding out if it will go through.
What’s your biggest pet peeve right now?
Pain medication [opioids]. I hate it so much. But my grandmother hates her insulin for her diabetes, but she still does because it keeps her alive. I’m on a teeny tiny dose to just keep me going. My rheumatologist informed me yesterday that this was the last script he was going to do, so now I have to go to a pain clinic. It’s difficult for me to get to a pain clinic.
Hogan declared a state of emergency for the opioid epidemic and I think that’s what made the doctor not able to give me my prescription. I think it’s interesting that they’re putting all this money into fighting the epidemic instead of funding research to alternative pain medications.
Since talking to you, I’ve had three fractures. Yesterday, when I got that phone call, I broke down. The first thought that was through my head was, “this is how I die”. It’s such a huge topic for me because if I didn’t have to take pain medication, I would be so much happier, because I hate it. I don’t like the sluggishness and I don’t like the addictiveness of it.
Between trying to figure out the care you need, going to all the doctors you need to see, arguing over your prescriptions and everything, and figuring out what you’re going to be covered for, it sounds like a full-time job.
It is. I really don’t have time for a lot else. I am dealing with some sort of health issue on every day. I have lists of things that I know I should do but that I don’t feel like taking care of at the moment, like my GYN believes that I have pelvic floor prolapse happening. And gave me the referral for the urologist, but I have not made the appointment, mostly because I have so much going on already that I’m dealing with, that I can’t even deal with another medical thing at this point.
We finally this year are seeing a word attached to the unspoken expectation that everyone just needs to buckle up their bootstraps and get on. They’re calling it “grit”, American grit. How do you find that this expectation affects you in accessing the care you need? Do you feel like there are a lot of assumptions that are made?
Especially because of me being on Medicaid. I have found also that it depends how I look. When I go into a doctor’s office, if I dress like I am now in sweats, I am treated differently than if I go in there and do my hair. Sometimes I’ll put on makeup and perfume or something. Just so I get better results from my doctors. It’s awful that I have to do that, but if you don’t look right and you have Medicaid, it’s all “you’re just a druggie, you’re just some loser that doesn’t want to work and is lazy”.
It’s a horrible, horrible thing that I’ve been stuck with. I had no choice. And there’s nothing I can do about it. It’s just my life. It’s very frustrating to know that I am treated differently because of it. I went to my orthopedist for my first SI problem. At this point, I had already been diagnosed with it. And he came into the room with his hands clasped and he leaned forward and he goes [in a baby voice] “Hi honey, so why do you think you have SI problems?” And I went “well, because of the diagnostic criteria that I’ve been having and the fact that my GYN and both my physical therapists have said that it’s been rotated, that it’s posterially rotated and winged out”. And he just looked like “whoa, whoa” and the whole entire dynamic of the conversation changed. But his initial reaction was “talk to her like an infant”. And it’s kind of sickening, that it was his gut, go-to reaction, what he saw on my chart.
Do you think that this new awareness of opioid addiction as a problem has contributed to this?
Oh yeah, definitely. Like I said, I understand that it is most definitely a problem and that there are people who are taking it that shouldn’t be taking it. But the patients that need it are getting punished. It’s so sad, there was a case in Virginia a few months ago. A man killed his wife. He shot her because she lost her pain medication and he couldn’t take to see her suffering any more. And he actually turned himself in. He said, “I just couldn’t do it any more. I couldn’t see her like that any more. She was dying in front of my eyes and I had to make it stop”. And they looked back on the case and it was a pretty desperate situation. The way he put it was, “you wouldn’t let a dog live in the amount of pain that they were letting her live in” and [her doctors were] just saying “well, there’s an opioid crisis, so sorry” and that was their only response. People are getting swept under the rug, basically.
Do you feel like your gender or being diagnosed with so many illnesses and other factors like that, do you think it all has an effect on the perception of the levels of pain that doctors feel you can endure?
Yeah, definitely. I get confused because they know that I’m in pain, but they feel like I should just deal with it. Especially with my gender. With the endometriosis. I had always complained that my cycles were incredibly painful and it didn’t feel right, and doctors would just [respond that] “Oh, it hurts”. And then we found out that I had this endometriosis thing going on.
So when I go in with issues, first they say, “well, it could be in your head’. Then, they start looking at the actual medical documentation. With my weight loss going on right now, my GI’s first response was “Have you seen a psychiatrist?” And he basically diagnosed me with conversion disorder, which is the new name for hysteria. And then it turns out that I had this jaw problem going on.
I’ve run the gamut of doctors. I also have doctors that are fabulous. My neurologist is actually fabulous. She actually cares, she takes time to ask questions to me. She sees a lot of weird things happen. I feel most doctors don’t want to take me on.
Do you think they might be worried about malpractice?
That’s exactly what I think. That they think, “well, that’s a special case right there, I don’t want to touch it with a ten-foot pole”. The GYN will say, “Oh, it’s your IBD”. And so I’ll go to the GI, and they’ll be like, “Oh no, it’s this”. And so they keep sending me to my different specialists. Because they don’t want to take care of the problem. That’s what it feels like.
The HR-676 bill (National Improved Medicare for All) would classify healthcare as a human right. If it was codified into law as a human right, do you think that it would affect the treatment that you get?
I do. I really do. Because everybody, all the doctors are so scared to write prescriptions. Because they are scared of the DEA coming in on them or FDA regulations coming in and saying “you’re doing this wrong”, or that they’ll get fined. Or they’ll lose their license. It’s noticing the trend of how scared doctors are getting to write these prescriptions. Like, my rheumatologist, before he wrote the first prescription, was, he laid out, “I’m only going to do this amount, this is all I feel comfortable with”, and he laid rules down to be able to have them. And I think that if patients were treated like patients, it would be better, instead of treated like a number, kind of, that’s just to be taken care of and pushed out the door.
Hundreds of years ago, you had to pay for fire insurance. And they gave you a big metal plaque that you put above your door. And there if there was a fire in the house, the fire department would come and they would say, “OK, you’ve got a plaque, we’ll put out the fire”. And if you didn’t have a plaque, they kept driving. They didn’t stop. But now, if somebody calls the fire department, they don’t get a bill. I feel the same way with health insurance. It’s seen as a luxury when it doesn’t have to be.
Tell me about the ideal health system. What sort of features do you think would make your life a lot easier?
My husband has only been allowed to make a certain amount so that we can qualify for Medicaid. I have to live here [with my parents] and I can’t apply for disability because if it would take us over the cap on income and we would lose Medicaid. We’re basically in forced poverty in order to have Medicaid.
Honestly, if we didn’t have to worry about our income level to be able to have health insurance, that would be a game changer on so many levels. I could do some sort of work from home option. I could potentially get a job. Or just apply for disability and be able to have that extra income. That would change our lives.
Do you think it would also change your children’s lives?
Oh, most definitely. They have had to deal with entertaining themselves because I’m on the phone with the insurance company so many times. I am on hold a lot. They’ve just learned, “Mommy has to go on the phone a lot”. Right now, I’m still fighting something that happened two years ago. It was a technical error with our insurance and we lost Medicaid for a week. And it was $1900 for two physical therapy visits. It’s little things like that. It takes time away from my children and it makes me more stressed out, which stresses them out, because they don’t understand, they really don’t understand what’s so frustrating about it all. My daughter knows a lot about insurance. She’s eight years old.
One of the reasons why I was really excited to interview you is that your experience challenges the way that illness and disability are presented in society, especially all this “disability porn” and inspiration stories.
[groaning] Oh my god, yes.
And not just that, but also the social trend telling us we should all love our bodies. I have friends who don’t love their bodies and don’t like being told that because they are in a lifelong struggle with their bodies. Do you think that there is a systemic gap in understanding the challenges that you are going through? And also, do you think that all these different distractions, like doctors who are worried about malpractice, doctors who are maybe judging you because of the opioids… do you think that all these things are preventing doctors from educating themselves and from being able to try out better types of care?
Oh, most definitely. They’re so scared about the government stepping in and potentially harming them in some way professionally. It’s almost like a real, palpable fear of branching out, because they don’t know if it’s even going to be covered by insurance. Because there’s a lot of experimental treatments that they’re like, “Oh, well, I can’t do that because it’s not exactly covered”. And there are people that are getting denied procedures because the doctors aren’t sure if the insurance is going to come through and pay it.
There’s a lot more information about EDS going on right now. And that’s been a campaign by the EDS society. Doctors are learning a bit more, but when I first talked to my primary care doctor about it, she said, “Well, I’ve heard about that, hold on”, and she went and got a textbook and read an eight-sentence paragraph about it. And she was like, “Well, this isn’t a big deal. You just bend more. There are a lot of gymnasts and acrobats and stuff that do this. It’s not a big deal or anything”. That was her response.
And I was just, “Oh, OK, so it’s not a big deal. I am just faking this. I’m just, I’m a wuss”. That is basically what I feel like I am being told: “You’re just a wuss. You need to buck up and deal with this. There are people that have so much worse. Why are you acting this way”?
It’s very upsetting. My quality of life is pretty bad right now. I feel like there’s a supernova going off inside my body. And everything’s falling apart. And I’m scared. I’m scared I’m not going to make it to my 31st birthday. And I’m getting the feeling from not only health professionals, but also regular people, that “others have it worse, so why are you complaining”, kind of thing. Yeah, there are people who have it worse, but my situation could be better. And there are ways to go about that.
Basically, I have been doing my best to tell everybody about HR-676 because I believe that our nation would change drastically for the good. We would have not only people surviving, but also in better health and more productive in society. If you’re more productive, you can take time to educate yourself, get a further education, which helps your children, which helps society in general. I really think that could be a turning point for our country, if healthcare was available to everybody.