Putting the “Able” in “Disabled”: the Eleanor Roosevelt Val Kill Partnership’s Julia Jardine on Autoimmune Disorder

By: Rory Mondshein

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I grew up in a theatre where I soaked up at an early age this powerful axiom which used to fill me with nothing but feelings of magic and love: There is no body who will ever love you, respond to you, get you as many places, or be with you for as long as your own body. This is why we must treat our bodies with altruistic kindness.

By the time I was in my sophomore year of college, this previously warm lesson became a haunting fact of life. “Autoimmunity” is the process by which my body decided it no longer would belong to me. It would no longer find interest in keeping me safe and healthy. My body and I were not only no longer friends by the time it started to take over, we no longer seemed to associate with one another. And when I became too exhausted by vilifying the thing I had to carry around with and clean up after every day, I chose to leave my body entirely. Falling into the sometimes slow, and other times unbearably and debilitatingly fast, decline of autoimmunity was the process of becoming absolutely alienated from what I once referred to in dance classes as the love of my life. I don’t know if anybody comes to understand the true meaning of the incurable and extensively complex disease people call “Autoimmunity” without simultaneously learning to loathe one’s own body. Meghan O’Rourke eloquently described Autoimmunity as a disease which causes people to stop living their lives and instead to begin impersonating their lives. And thus, for me, the healing and treatment process for autoimmunity can be described by the process of finding my way back into my body, so that I can look at the physical world again through my own eyes without hatred or cynicism.” – Julia Jardine, The Eleanor Roosevelt Val-Kill Partnership

Autoimmune Disease (AI) is characterized by healthy cells fighting one another as if they are foreign agents. In total, Autoimmune Disease affects almost 50 million Americans, and, in the absence of global statistics on AI, there is no standard point of reference to conduct a cross national comparison.

Although relatively little is known about Autoimmune Disease, the Institute of Medicine reports that the United States falls behind other countries in terms of autoimmune research. As it stands, there are over 80 different types of Autoimmune Disease that affect multiple areas of the body, and, oftentimes, medical professionals struggle to find the root cause of the patient’s problems. The fact that Autoimmune Disease affects many different areas, and is characterized by seemingly common symptoms create additional challenges in terms of research and diagnosis.

According to the National Institute of Health (NIH),  patients with autoimmune disease spend around $100 billion to cover annual medical costs.

Unfortunately, the $100 billion in annual costs reflect the rising cost of autoimmune coverage in the wake of the Affordable Care Act.

The National Coalition of Autoimmune Patient Groups reports that the Affordable Care Act has led to increased premium and deductibles paired with decreased services.

According to the National Coalition of Autoimmune Patients group’s online survey in 2014, 42 percent of autoimmune patients reported an increase in insurance premiums since the passage of the Affordable Care Act; 34 percent reported an increase in deductibles.

Sadly, no follow-ups to the study have been published, and it is unclear whether or not patients are still reporting the same amount in healthcare costs.

We do know, however, that many medical advancements have been made.

For example, researchers at the University of Pennsylvania found a way to treat Pemphigus Vulgaris (PV) through artificial target-recognizing receptors.

Yet, although many studies have yielded great research, each of the findings can only be linked to one type of Autoimmune Disease, as opposed to all 80.

In light of the many medical challenges and the relatively little funding available for research, the scientific community has yet to develop a comprehensive cure for Autoimmune Disease, which forces patients, like Julia Jardine of The Eleanor Roosevelt Val-Kill Partnership, to rely on temporary treatment for the often painful disease that affects her joints, muscles, and skin.

This month, I had the privilege of interviewing Julia Jardine to discuss comorbidity between Autoimmune Disease and ADHD in order to change the conversation about these disorders through success stories.

Tell us about yourself.

My name is Julia Jardine. I’m 22 years old and an incredibly proud Bard Alumn as of this past May. I received my B.A. in Human Rights, and everybody who told me it was a useless stupid degree that wouldn’t get me a related (or any) salary job out of college – was wrong. I’ve lived in the Hudson Valley my whole life. I love the outdoors, coffee, ice cream, and my Levi’s. I am passionate about community building and organizing. I am in love with my job. I am successful, independent, smart, happy, and healthy.

I also struggle with chronic and incurable disability and disease: Systemic/Connective Tissue Autoimmune Disease. Unfortunately, not everybody who has these disorders shares the privilege that Selena Gomez and I have – to be successful, independent, happy, or healthy. I hope this encourages others to learn about and fight against the various societal structures placed against those who suffer from autoimmunity.

Why are you interested in human rights? What sparked your interest?

I think I first became interested in the idea of human rights because I was fascinated by the history of how and why “Human Rights” were “created” and was interested in why the framework does not work for all groups of people and what this means. I first became interested in human rights because I saw it as something that doesn’t yet work, and I wanted to know why. I became quickly interested in studying the strategies, practices, ideologies, and underlying assumptions of Human Rights organizations and advocates, that might be doing more to hold us back than to help us get ahead.

What is your position?

For the past two years, I have been working for The Eleanor Roosevelt Val-Kill Partnership, a small non-profit in a public-private partnership with the Hyde Park National Park Service, dedicated to preserving Eleanor Roosevelt’s legacy and making her ideals that made her a powerful and courageous leader for social justice relevant in our time. Right now we are working on developing and launching a new WordPress website which will debut much of our content available to the public for the first time. We are also organizing Eleanor Roosevelt & Human Rights content that Discovery Education will be providing to millions of students across the country. We’re also always working on other various projects and events happening at Val-Kill this summer. It’s a dream job; I often forget I’m “working.”

How did you get involved with that?

I was actually applying for another job at the Bard Center for Civic Engagement. I didn’t get the job. But the interviewer did let me know of this two-month summer internship working on developing a human rights workshop with The Partnership, and I decided, why not. So I really just owe everything to Erin Cannan, who gave me my dream job without either of us really knowing it at the time.

What kinds of events?

One of the events that we are all working on right now is the 4th Annual Val-Kill Picnic and Square Dance which is happening on September 17th from 2 to 6 pm at the Eleanor Roosevelt National Historic Site. It’s an incredibly fun event with locally augmented food, local musicians, hands-on outdoor Val-Kill Industries exhibits, and family activities including square dancing and face painting… all right on the land where Eleanor Roosevelt hosted the King and Queen, Winston Churchill, and many others during her days of “Picnic Diplomacy!”

What inspired you to do what you do?

I fell almost seamlessly into most of what I do now… I entered Bard College being interested in bioethics, biology, painting, and creative writing (so everything). When I got this internship two years ago, I was so instantly moved and inspired by the people that I work with and for that I really just couldn’t see myself doing anything else.

What is the Bard Center for Civic Engagement?

The CCE is an amazing place at Bard where communities connect and individuals collaborate to accomplish a shared goal.

Why do you like what you do?

I have a wonderful work environment that is flexible. I work with amazing people that inspire me every day. I get to apply my academics which is something that many people in my life have told me I’d never do, especially graduating with a degree in “Human Rights.” My boss gives me important, meaningful projects that challenge me to think creatively, give me a lot of valuable work and leadership experience and keeps me excited about the organization and the work we’re doing.

Tell me about your disability.

I also have what my rheumatologist calls “Autoimmunity,” or some people call it “Autoimmune Disease,” or “Collagen Disease,” or “Undifferentiated Connective Tissue Disease (UCTD).” This coupled with a lot of allergies is what makes my life more complicated than most people my age. I also have “a little bit of Crohn’s” and some other immune-intestinal problems that I’m still trying to diagnose and find treatment for… This blanket diagnosis comes with a lot of other diseases and syndromes, but I’ve come to learn the European philosophy of trying not to name myself and all my defects is what is right for me right now. So for the case of this article, systemic autoimmunity is all you need to know.

  1. Having autoimmunity essentially means particular parts of my immune system have a tendency to attack my body at various points as a result of various triggers. There is no known single “cause,” though there are many known triggers and underlying risk factors.
  2. I have “severe” ADHD.
  3. I have “severe” Language Disorder (Aphasia): This means I have trouble with language, meaning and expression. I have trouble interpreting meaning from language and I have trouble successfully exhibiting meaning with language. I think my “visual-spatial impairment” is a part of this, which means it is hard for me to deal with visual-spatial arrangements, like… chemistry, or mirror images, etc…

When were you diagnosed?

I must first say, diagnosis is not a priority of doctors for autoimmune disease like it is for other diseases. What doctors do with autoimmune disease is treat symptoms for diseases that are often never uncovered. Without treating the underlying causes and diseases that AI sufferers have, this ultimately makes the amount of stress that an AI patient has significantly increase. Instead of trying to make a patient better by treating underlying causes and specific diseases, often patients are given lots of medication, treatment and asked to change their lifestyles so that their symptoms might be further suppressed. Meanwhile, this suppression of symptoms masks underlying causes and diseases which tend to just get worse as people age.

I must quote my favorite writer on the topic, Meghan O’Rourke because she words diagnosis the best: “Illness narratives usually have startling beginnings—the fall at the supermarket, the lump discovered in the abdomen, the doctor’s call. Not mine. I got sick the way Hemingway says you go broke: ‘gradually and then suddenly.’ One way to tell the story is to say that I was ill for a long time—at least half a dozen years—before any doctor I saw believed I had a disease.”

When I was in High School I believe I began having thyroid problems, and I started taking medication for Hypothyroid, which was the first sign of Autoimmune problems. Towards the end of high school and in my first years of college, I began having some symptoms that my doctors worried was Multiple Sclerosis, and I began undergoing some testing for MS and other neuro & immune related disorders. I never finished those tests. But you know, problems that all led to autoimmunity began adding up in high school and college and I knew I had autoimmune problems, though I only started treatment from a Rheumatologist about 7 or 8 months ago. An actual “diagnosis” for autoimmunity never really felt conclusive for me. I still have many unanswered questions, unsolved and untreated problems, and unfinished testing.

I have been diagnosed, undiagnosed, and diagnosed with different diseases all under the umbrella “Autoimmune Disease” many times before, and with many different diseases. Most recently this has happened with Erythema Multiforme, which four separate doctors all had different opinions on what it was and what to do about it and what caused it… It causes a terribly painful rash that goes systemic quickly and is often confused with chronic systemic hives (or an allergic response). This is not an allergic response; it is not hives; it is a neurological response, and it is much more complicated to prevent and treat. I’m on my fourth course of Prednisone currently, which has awful long term side effects on my body, and this is my third month of being on prednisone. How do you prevent it? Well, nobody knows but chances are avoiding Tylenol, Advil, other NSAIDs and other drugs in general is my doctor’s best bet – but this is vague, and I take many drugs daily, and NSAIDs are very much a part of my life because one of my syndromes of Autoimmunity is Chronic Migraines and chronic pain.

For ADHD and Language Disorder, whatever that even is, I was diagnosed just a few years ago, while in college.

 

How do these affect your work?

Fortunately, I am extremely lucky. The people I work with are flexible and incredibly kind and understanding, which makes all of my last minute doctor’s appointment scheduling much easier and less stressful.

In addition, because there are always new and exciting things happening at work, the needs of my ADHD are met… I can work on multiple projects at the same time, and when I need a break from one, I work on something else for a little and go back later.

How does that affect you?

I think with any kind of “disability” or “illness,” there is are adjustment periods. With autoimmunity, because my body seemed to slowly fall apart year after year that I was in high school and college, the adjustment period happened in cycles. Because autoimmunity is something that is so incredibly misunderstood, understudied, “hard” to diagnose and treat, and because the time commitment is huge, this affected me a lot in mostly my college years. The stages of grief include denial, anger, bargaining, depression and acceptance. It might sound dramatic but I think the best way to understand what I went through in cycles for multiple years regarding the loss of my body and my self contained these varying stages. For the most part now, I am in the acceptance zone, and I think that is because I have such a better understanding than I did two years ago, or even one year ago, about what my body is doing to itself. There are still times where I feel incredibly alienated from my body. This pops up during the days where I physically and mentally cannot function in my daily life as a result of my autoimmune system. My autoimmunity without a doubt has been affecting my everyday life for a long time now. I have an entirely new and much stricter lifestyle than many other people my age. For some people making a doctor’s appointment is “adulting.” On the other hand, for a while now I have been visiting my doctors on average multiple times a week. I can’t miss out on sleep and I can’t afford to eat too poorly, change routines, or stress too much. Again, a lot of these things have made me feel old, weak, or boring in the past. I have known FOMO like many college students haven’t. But this has taught me balance, putting my health and myself before anyone or anything in a way that many people my age also haven’t experienced.

Coming to peace with my body has meant coming to peace with not knowing. It means picking and choosing which tests I deem are most important, because doctors throw too many at you to ever be possible to do and work part time. Coming to peace with my body has been a long, arduous journey. If you are like me and find living without control over your life very challenging, autoimmunity is going to be hell. At any given time, my plans for the day, week, or month have to be altered and I have to strike my calendar of plans and events of any kind – work or pleasure – in order to take care of my health. This is hard for anybody, but for a Type A control freak, it is really really really hard.

How do you treat it?

First and foremost, staying healthy because one of the biggest triggers is stress. Exercise is a way to remind my body that I love it. Plaquenil is an antimalarial/gentle immunosuppressant, commonly used for autoimmune problems like mine. Vyvanse is an amphetamine, a stimulant, which fights my brain fog. A monthly B-12 shot is for pernicious anemia, because I have antibodies which find it fitting to destroy my B-12 stock and make B-12 vitamins virtually unusable. Synthroid is a drug which regulates my thyroid. Prednisone is my newest best friend, which has been helping me with undifferentiated systemic allergic reactions. Flonase, eye drops with a powerful antihistamine, Allegra, Advil, Tylenol, aspirin and Rizatriptan, are additional drugs I take regularly and always keep handy for my frequent allergies and migraines. Probiotics are useful for my stomach problems. And for the times that I’m actually able to maintain such a diet, a Paleo-style Autoimmune Diet with non-wheat (allergic to wheat) foods has really helped me. I’ve been a part of Facebook support groups and I am on My Lupus Team and My Crohns Team for additional “treatment.” Without a doubt, the best treatment is managing my stress and schedule and making sure I take care of myself.

Why did you decide to open about it?

I think it makes us stronger and better in the long run to find comfort in who we are, what our experiences have been, to honestly and openly face what our strengths and weaknesses are… and to share that with others, so that we can begin to learn from how others have dealt with the same or different experiences.

How did people react?

It’s a mixed bag. I think, unfortunately, the kind of support that I have received has felt patronizing more than understanding or interested. What I would have really liked would be for people to simply ask me about what I experience, any aspect of it. Just some kind of genuine interest, instead of some kind of judgement. At the same time, I know I’m not the best communicator, especially about things that make me feel weak so that doesn’t help.

“You know, nothing is new…you’re still the same Julia I know and love…” Meanwhile, my whole world seems to be changing faster than light, going upside down through a convoluted tunnel, and I can’t see where I’ll come out. So, eh.

“You’re not REALLY sick, like, at least you don’t have cancer… at least you will live.” I mean, true, but I want to not have cancer AND I also want to not have to spend three weeks of my winter break at the doctor’s office doing awful lab testing every single day from 8:30 am to 3 pm. And frankly, I think some people with cancer might not appreciate you using cancer as the most awful thing that could happen to a person. Our luck, our health, our happiness, etc… it’s not a competition to determine who has the best or worst life and to compare and contrast. There are all different kinds of privilege. I’m usually confused when something like this comes up because I think, “Yes. There are many bright sides. No, I’m not going to die. Yay. But that wasn’t at the forefront of my list of things to be happy about, concerning my health, yesterday. And although that may seem really dumb, that is a hard mental change to go through, and it’s really strange to hear somebody to tell you to adjust from “healthy” to “won’t die right now.”

Did you ever regret speaking about it?

Absolutely. I may regret all of this to some degree. Who knows.

What do you think the biggest misconception about your disability is?

With ADHD, it’s about what “focus” is. Vyvanse gives me the motivation to do things I otherwise might not be interested in doing… however, when I don’t take my vyvanse, I still have an incredible amount of focus… it’s just only with the things that I’m actually interested in doing. ADHD means I hyperfocus on what I love, and that is very much a gift that many people do not have. It doesn’t necessarily work in a traditional office workspace, but it will make the best artists you’ve ever known.

My ADHD constantly ensures I’m doing something I love, something that is fun, that switches up my life, challenges me, forces me to take risks, get a wide range of perspectives, and have a better sense of the world, my abilities, and my surroundings. A person with ADHD may have more experiences than someone who doesn’t because they are constantly being motivated to  dive into something new, passionately.

What do you wish people would know about your disability?

ADHD is not a disability inherently. It is a disability because our society does not accommodate for difference. In itself, ADHD has many amazing attributes. ADHD does not disable people. It is our schools and our workplaces that disable people with ADHD.

Autoimmune Diseases are very hard to deal with today because of the lack of attention they receive. According to the AARDA:

64 percent of family physicians stated they are “uncomfortable” or “stressed” when diagnosing autoimmune disease in patients.

73 percent do not believe they received adequate training in diagnosing and treating autoimmune diseases.”

57 percent reported they had only one or two lectures on autoimmune disease in medical school.

These statistics are very obvious to patients who suffer with immune disorders. Treatment is extremely time consuming… Many patients have dozens of specialists, specialists that have competing ideas about what is wrong with you. Oftentimes, each specialist makes you undergo dozens of tests – some require you to stay in the hospital for the entire day, and require really hard prep work and fasting… One month this year I spent 144 days fasting, which as a sick person, is harder to do than a healthy person. It was hell to be honest. And it was draining. And there were other tests besides the tests that required fasting. And that was during my winter break… Another thing I wish people knew was that patients more often than not know more about their disease than doctors do. Which is clearly very scary and intimidating and sometimes angering to doctors and specialists. Every AI patient will experience their doctors shutting them down at one point or another, and it’s not always easy to find a doctor that pays attention and helps lead you to conclusions. For me, the diagnosis process is not over. And I don’t expect it to be for quite a few years. I already took off school to get ahead on medical testing, and I devoted multiple vacations to getting tests done. It’s frustrating as a young person and can be alienating to see your peers have experiences abroad and on vacation, and doing fun relaxing things – or even just STUDYING and being able to stay up late studying… I can’t do all of these things. I KNOW it sounds like a ridiculous complaint, but I can’t count how many times I would have given up so much to be able to be a normal student with normal non-medical priorities.

If I quote Meghan O’Rourke again here, “In fact, autoimmune disease is as much of a medical frontier today as syphilis or tuberculosis was in the nineteenth century. And yet some researchers say that the number of cases is rising at almost epidemic rates.”

I and many other patients have had multiple times one doctor that says you have one disease, and another says you have a different disease. AI takes a lot of self-direction and self-treatment, and self-reliance to get you to the correct diagnosis, it takes a lot of time and energy, or “spoons” in Spoon Theory, and it takes a special kind of support system that unfortunately not everybody who has autoimmunity has.

Autoimmunity is lifelong. Treatment more often than not helps to keep things from getting worse, but does not solve any already existing damage. Having lifelong health problems means lifelong lifestyle change. It means applying for disability, it means learning how to work from home, it means travelling far to find the nearest specialist, it means spending hours on the phone with insurance and doctors every week, it means carrying a bag of medicine home that costs as much as my first car.

What do you think needs to be done to reduce the stigma?

More than anything, I wish people would ask questions. Uncomfortable questions. Disability and illness do not manifest in all bodies in the same ways, so we cannot assume experiences or understanding. We have to let the people who are being labeled develop their own labels. It is nobody else’s right to label somebody else without consent. Don’t pity people. Don’t feel like you have to cheer people up all the time, or apologize. Just ask them about it. Whatever you want to know. When I see somebody freeze up because I say I have an autoimmune disease, trust me, I am more embarrassed and frozen than you are. Because when I see you that uncomfortable about my health, it makes me feel sicker, and it makes me feel embarrassed to have said anything, and it makes me feel lesser than you because you’re sending me a message that something about my health is incomprehensible. It would be a whole lot less awkward for everyone involved if it didn’t have to go down that way. Just say what you want to say or ask what you want to ask. I hate seeing all the questions and discomfort written all over your face. That’s one situation. There’s also the common situation where somebody apologises or says, “it must be hard.” The optimist’s alternative to this situation is when somebody trivializes my experience before they know anything by concluding something like, “at least you’re a, b, and c…” All three of these situations, the frozen sympathiser, the apologetic sympathiser and the optimistic sympathiser all say one thing to me: You are scared of me and you cannot see yourself relating to me. It’s why you say nothing or something, instead of trying to relate or understand first. It’s a way to quickly move on from an uncomfortable situation. And I’m over here uncomfortable too, but I wish that people around me could start sending me a message of acceptance and interest instead of contrived fast paced sympathy which registers to me in person as a pity that you express so kindly and sincerely in hopes that you never have to experience it ever again and can quickly run from whatever made you feel that way.

How can we change the conversation?

The term “gaslighting” was introduced to me recently. The term was introduced to me by a friend who told me that “gaslighting” is when an abuser uses psychological means to manipulate the abused into questioning their sanity. This made me think about how our society manipulates disabled people and sick people into feeling lesser, into feeling more disabled and more sick. I didn’t just realize I had health problems one day and get tested and was diagnosed, end of story. Across many years, I questioned myself a lot. There were quite a few times I convinced myself I was just bad at school, that I was just lazy, that the health problems I was facing, I was probably just exaggerating… When I found out there really were some things “wrong,” I swear I have never known such relief.

I think we have to be more humble about our assumptions of other peoples’ lives. Even the little things can get to somebody. I remember well leaving the gym after running five miles the day after I had sepsis (I was so proud I ran five miles in the gym the day after I had sepsis! I was feeling so good about my body, so proud, so much in myself). When I was walking outside into the rain, somebody said to me outside the gym (an older man of course): “I bet you don’t mind the rain! Not with your young and healthy immune system! Enjoy it while it lasts…” Filled with endorphins at the time, my response was a “HA,” and it was in response to a joke he didn’t even know he made. Saying small things like this judgement about my immune system, they can build up. He didn’t mean harm of course! But it reminded me I’m different for the rest of the night. It made me feel like I have to gracious to him and laugh in response, because it’s not like I’m going to say “lol. Not really, bro.” It’s little moments like these that made me feel like me and my body were playing some kind of pretend health game.

So we don’t need to change the conversation yet. We need to start it when it comes to autoimmunity.

We cannot keep treating women’s AI symptoms with steroids, SSRIs, immunosuppressants, and other drugs that don’t attempt the underlying causes of AI. We have a long ways to go. Let’s start talking about the causes of disease and let’s start listening to the patients.

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