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"There should be a lot more empathy and human connection."



“My name is Madeleine, or Maddie. I go by either. I use she/her/hers pronouns. I am an Asian woman of color, queer, and chronically ill. About a couple of years ago I was diagnosed with my first chronic illness, Celiac Disease, and that started spiraling into more chronic illnesses. Now, I have a slue of chronic illnesses, including some rare diseases. I *sarcastically* love being ill.


I am also a pre-med student and I have wanted to go into medicine since I realized what being a doctor entails. I hope to head into psychology, specifically, adolescent psychology. I think it is extremely interesting. I was in inpatient, once upon a time, so I have had an intimate view of what adolescent psychology and psychiatry is like. I also had that patient view as I have been in and out of healthcare systems for years. Specifically, I have experienced the healthcare system as a patient who has multiple minority identities. I hope to bring that insight into my care as a doctor eventually.


I have too many specialists to count! A lot of providers I have interacted with have not experienced the healthcare system as a minority person. And many have not experienced it as a person with multiple, intersectional identities that create different world-views. And some providers have not experienced it as a patient themselves.

 

I first started to realize my queerness in my middle school era. I am currently based in Portland, Oregon and I go to school in Oregon. This is one of the more liberal, out, and accepting cities/states. So, for me, there was never a feeling of this is wrong or this is something I should be hiding. Come middle school everyone is going through puberty and it is kind of awful, but also, it’s like, ‘Woah, I am experiencing new things and I am realizing that girls can be with girls and boys can be with boys.’ And then I was like *surprised/shocked face*, ‘Me??? I connect with that!’


I identify as queer, but it took a while to actually get to that place because not a lot of the typical LGBT identities felt comfortable for me. It took me a long time to get past the questioning phase, even though I knew I liked girls and related to being queer. I couldn’t find a label that stuck with me, and that was certainly one of the most difficult parts of my journey into being queer. It took me about 5 years to get past that questioning label. What helped me were online queer spaces and my local queer community.


Come high school I realized that queer is the label for me and I really liked it! But I still didn’t feel complete. I didn’t have a lot of crushes. I never had a celebrity crush. So, I realized I am on the ace spectrum. I identify as demisexual and demiromantic. That took a lot more reckoning than just saying, ‘Yea, I am queer.’ Realizing that I was on the ace spectrum was a lot harder for me. The culture around being queer is often based on a lot of these first experiences that I never had like crushes or just being attracted to someone. I could objectively look at someone and know that they were aesthetically very pretty. Anyone of any gender I could look at them and see that they were aesthetically pretty, but I wouldn’t want to be in a relationship with them. So that was a lot harder for me to come to terms with, but I got there eventually, which was what made my journey through healthcare easier.


I went into healthcare with a relatively concrete understanding of who I was as a queer individual. Going into the medical system really headfirst, for the first time, in any aspect, is a nerve-racking, scary experience. It makes it harder when you’re in the middle of discovering yourself, in which ever way it may look like. Knowing about my queer identity and being secure in my identity made going into the medical system as this sick kid easier. I felt empowered by the fact that, for the first time in a long time, I didn’t have to go into this new, scary experience trying to either figure out how I was and am as a queer person. I could just be, and be sick, secure in my own knowledge of my queerness. As I mentioned, I have many specialists, yet I never had to seek out my specialist's approval or feel like I was in any way vulnerable with those providers. I do have an aspect of privilege there as I come from a very LGBTQ+ friendly city, which is really nice. If I had been in some other city, I am sure the story would have been different.

 

Autoimmune diseases are more likely to affect those assigned female at birth. Inherently, I am also at a higher risk for additional autoimmune diseases because I have multiple already. Like I mentioned before, I have quite a few specialists, so I have interacted with many physicians in different fields. Sometimes I see them once and sometimes I see them weekly or monthly. That means I have the privilege of experiencing a lot of different provider styles.


I have had some really great providers. My PCP has been one of my greatest supporters. I actually get to shadow her later today! She is great. She has been a person who has always believed me and not let the fact that I am a queer woman of color get in the way of my health. That is a paradigm of what a medical provider should be. They should look at you and try to really just help however best they can.


On the flip side, I have had providers completely dismiss me and what I have come in with. I will give them my laundry list of symptoms and they say, ‘No that cannot be.’ I have had providers make uncomfortable comments about my sexuality, specifically around pregnancy.


Two incidents come to mind. With hyper-mobile Ehlers Danlos Syndrome (hEDS), your inner organs are constantly at risk for prolapse because the connective tissue holding your organs in place is too loose and stretchy. The connective tissue that is trying to hold them in is working overtime. All in all, prolapse can happen at any time. I never want to be pregnant. For me, pregnancy would spiral me back into anorexia. That would not be great for my body or the fetus. I was offered medications that would potentially help with my joint pain, granted I have never taken them so I don’t know if they would help. When I was offered them, it was made clear that taking the medication would prevent me from ever having kids in the future. I said that I never wanted kids, at least biologically. They responded saying that I was only 18 and that I had no idea what I was doing with my life. I know that I would not want to put my body through that mental stress or potential physical stress related to prolapse for something that others think I should want because I have a uterus.


The other time was more about my sexuality. One doctor indicated that a medication we were discussing would impact my sexual response. I said, “That’s fine. At this point, I will try anything.” They responded, “You don’t want to disappoint your sexual partner.” I tried to communicate that I don’t have a sexual partner, and they responded, “Well, what about if you do in the future?” They implied that the partner I should have, should have a penis. I expressed that I am not about that, to which they said, “Are you sure? You’re only 18!”


So ageism also came into play there. Because I didn’t portray a *mature* age and because I wasn’t responding with what a uterus haver or woman should have in their mind, they got very uppity with me. They assumed what I should want now and in the future.


Of course these providers were men, or penis havers. They were not young either. I hate to give them a copout… A lot of physician education has changed, but it hasn’t caught up to older providers. It really does suck that it has to be this way.


Providers that have made comments like these are often the ones that are more dismissive of my symptoms and diagnoses. Often these are the providers that I can’t even say, ‘Oh well at least I got a blood test or echocardiogram out of that.’ These are the providers that I leave thinking, ‘I just wasted a $30 co-pay so that a provider could dismiss my symptoms. Great. I love it here.’ Even though these situations are tough, I can look back at it as a learning experience for what kind of provider I hope to be in the future. How can I hopefully be a better provider than that provider was to me.


Often providers fall in the middle. We aren’t going to get too personal. We aren’t going to tell each other our life stories. You serve me, I serve you. Great.

 

This is going to get a bit gross, but what is medicine if not a bit disgusting? Throughout sophomore year of high school, every morning I would vomit. It wasn’t bulimia. I wasn’t forcing myself to vomit. I was eating all of my normal foods. I wasn’t eating anything out of the ordinary. I was not on meds. But, every morning I was destroying my esophagus. Nobody knew what was up.


I went to my PCP, and she thought it was GERD (severe acid reflux). I thought, ‘Yeah, maybe it is GERD! I was a vomit-y baby.’ I went to a speech therapist who thought it might be a bad gag reflex or a bad swallow mechanism. Maybe it is? But I don’t know! You tell me, speech therapist!’


At that point I didn’t want healthcare to get into the way of school. I decided to wait till summer to solve this issue. So, I went through all of sophomore year of high school just vomiting and then heading to school, pretending like nothing was wrong. Come summer, we do some blood tests and my doctors told me that my TTGs are high, higher than normal. TTGs, tissue transglutaminase antibodies, are the marker for Celiac Disease. Normal ranges of TTGs are 3-5 and mine were in the 300s. So, mine were definitely high. This was particularly surprising as no one in my family had a history of Celiac.


I was sent to the gastroenterology section at the children’s wing of OHSU, our state hospital. That was my first introduction to OHSU, which has since become a second home to me.


I had an endoscopy, which is a gold standard diagnostic procedure for Celiac Disease. Villi (cells lining your digestive system that absorb micronutrients in food) normally look like wiggly fingers. A person who has Celiac has stunted villi that are not wiggling, because of the autoimmune response to gluten. For about a year, I wasn’t getting any nutrients from food. I was not able to keep food down either.


When I started junior year, it was confirmed that I had Celiac and was told that if I went on a gluten free diet I would start to get better. I went on that gluten free diet. For the first five months after stopping eating gluten, you are still technically sick. Despite not eating gluten, your body is not used to being able to digest nutrients without having to attack itself. So, for the first five months, I was still really sick and I was still losing weight. After five months my doctors kept asking, ‘You have been on a strict gluten free diet, right??’ I would respond, ‘Yes, yes, I have been on a strict diet.’ They would respond, ‘But, you're still losing weight.’


Essentially, my body and mind had gotten so used to functioning without any food in my body that I developed anorexia. Anorexia was a lot harder than Celiac Disease because I had to deal with all of the mind stuff. With Celiac, I had to grieve the loss of what was my normal, which is eating gluten, lovely gluten. But, with anorexia I had to deal with intensive therapy everyday and trying to stop myself from wanting to throw up. For a while I was very, very sick, not of my body’s doing, but of my mind’s.


From there, I regained weight, got out of inpatient care, and my therapy lessened from daily to weekly. Everyone around me was like, “Okay, you should be getting better. Why aren’t you getting better?”


Basically, this has been my life since 2018. I have been getting one disease, doctors will diagnose and correct it, but I won’t get better. Then, a new disease pops up. From anorexia, I recovered and gained weight. I am at a healthy, stable weight now. Then I started experiencing a lot of joint pain. They ran more blood tests and said, “That’s weird… You don’t have any markers for lupus or any forms of arthritis.”


This March (2021) I was diagnosed with hypermobile type Ehlers-Danlos Syndrome (hEDS), which is an autoimmune disorder that impacts connective tissue. Typically, it impacts skin, ligaments, and joints. For me, it is a lot of joint pain. I cannot stand for longer than 20 minutes at a time because that is too much on my joints. I have a lot of really classic signs of hypermobile type EDS, like velvety skin. I also have some comorbidities alongside my EDS, such as POTS and mast cell activation syndrome (MCAS).


My body has been through a lot. My muscles atrophied over the period that I was anorexic as I was not able to move or expend energy. I have gained back muscle mass and strength, but my providers and I still haven’t found a proper solution for my joint pain. So, I am in a pain range of about 5-8 daily. This is all while I am a full-time college student. I like to joke that being chronically ill is an unpaid full-time job. I often have up to 5-6 appointments a week. That takes a lot of energy. Simply, my body is working against me. This is something else I have had to come to terms with. What I want as a young person is not what my body wants as a body that wants to die.

 

This is to anyone who interacts with the medical system in any way, as a patient, as a provider, or just an onlooker. Medicine is hard in all aspects. There should be a lot more empathy and human connection. I know, as a patient, those providers that have that human connection and empathetic response to their patients are the ones I gravitate to, who make me comfortable with my laundry list of health problems, and (I am assuming here) make the rest of their patients comfortable. In any way we interact with the medical system, it is important we all approach it with the most empathy we are capable of. There are a lot of assumptions made about the humans who interact with medicine, and there is not enough humanity within it. It sucks. It is hard, but that is how it is.” -Maddie Limon, Portland, OR (she/her/hers)



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