Abbey: Thanks for sitting down to talk with me today. You’re the very first Glass Body Steel Soul patient interview! Abby Oliver (photographer) is joining us so that she can get to know you and tell your story through images (you can learn more about Abby and her work on our Partners Page).
Caroline: I’ve never met anyone else with Dysautonomia! You’re the first person I’ve met. Having a support system and networking with other patients is huge and really important for our mental health.
Abbey: Yes! And I didn’t realize I am the first patient you’ve ever met! That makes this even more special. You are not alone. And telling your story will foster awareness and remind other patients that they are not alone either. So, thank you for being brave enough to do this. I know first hand how vulnerable it feels to share your story publicly.
So tell me, what was your life like before chronic illness? Before Dysautonomia?
Caroline: Yea, I feel like I’m a completely different person, which sounds crazy.
As far as academics, I took all AP courses, always made the honor roll. I was active in my school’s choral ensemble and annual musical, and I worked a normal assistant job at my local Meals on Wheels.
Physically, I was really active. I did competitive dancing- Dance Moms Style (laughing). I started running my freshman year. I tried to run 3-7 miles per day... I just loved running!
I played golf up until my senior year of high school.
Now, I look back and think, “How the heck did I walk 18 holes with clubs on my back in the middle of august when it was 100 degrees?”
Abbey: I can hear in your voice how much you miss those activities. What do you miss most since you became sick?
Caroline: Yea, running would definitely be it.
Abbey: And when did your symptoms begin?
Caroline: I started getting sick around my sophomore year, with random symptoms like pain in my legs, headaches, dizziness, nausea, cold hands and feet, tremor, and muscle weakness, but I still kept up with my active lifestyle.
I went to my primary care doctor multiple times and told him I was weak and dizzy. But my blood work was normal, and I was kind of just dismissed.
So I thought, “Okay, I guess this is normal?”
I became homebound in college after I started passing out and was too weak to go to classes.
Abbey: How did you feel emotionally when you were undiagnosed- when you were dismissed but knew that your symptoms were real?
Caroline: The process of getting diagnosed was terrible.
I would go into a doctor’s office and wonder, “Is this person actually going to take me seriously or am I going to be told I have anxiety again?”
It impacted my confidence level and self esteem, and it’s something I still struggle with. There’s so many outside voices when you’re undiagnosed that you’re faking, lazy, or -insert adjective here-, and that’s when I started to lose confidence in myself. I felt like if I spoke up, told someone I felt sick, I would be judged.
I had teachers who were not supportive. I would tell them I was sick and put my head down during class, or miss a week, but they didn’t believe me.
I had a lot of classmates call me a “hypochondriac,” or say that I was “dramatic.” I stopped updating my friends or teachers about my health because I felt like they didn’t care.
I was also losing my ability to run any more than 3 miles, and had to quit golf; both of which were upsetting because those were ways for me to socialize, exercise, and de-stress.
Abbey: I’m glad you mentioned anxiety. It’s a common thread in patients’ stories- to be told that all of their physical problems are the result of either anxiety or depression- which are both very real medical issues. However, you can’t improve Dysautonomia symptoms by treating anxiety or depression. Mental illness is a separate condition if it is present at all.
So, I’m curious, what were you interpreting as your doctor’s reason for saying that? How did you feel? Were you thinking, “Why would he say this to me?”
Caroline: Yea. Well, I knew why.
It’s easier to find anxiety than to take the time to find whatever else is wrong, because they clearly didn’t know.
Abbey: Did you feel confident advocating for yourself? Some patients do, but most I’ve interacted with do not.
Caroline: Oh, I didn’t.
I remember going to the doctor and getting in the van after with my mom, and I just broke down crying, “What are we going to do? When am I going to see a doctor who is actually going to help me?”
Because we knew something was wrong, and it wasn’t anxiety.
Abbey: Did anxiety ever become a factor?
Caroline: I didn’t care until I passed out in Walmart. That was the tipping point for me, because that’s when I had to move home from college, and I was homebound for 8 months. I was worried to go anywhere because I was so weak at that time, it was very possible that I would pass out any moment.
I’m definitely not an anxious person, but what gave me anxiety was going to a doctor and wondering if they were going to take me seriously. Or going out places and wondering if I was going to pass out or feel strong enough to stand. That’s what gave me anxiety. Not anything else. I had anxiety from the unpredictability of my illness.
Abbey: That’s so well said. I’ve heard many people try to describe that, and it’s difficult. I remember I myself was hesitant to get counseling for anxiety because I worried that if it was on my record, doctors wouldn’t treat my physical illness. And same experience- I never suffered from anxiety until several years into living with Dysautonomia.
So for you, anxiety ended up happening, but you’re saying it was secondary to chronic illness? It was because of the unpredictability of your symptoms and lack of resources in managing a debilitating chronic illness?
Caroline: Yes. After passing out at Walmart and becoming homebound.
When I was homebound, we would take a car ride just to go get food, and I had to lean my chair back since I felt so sick and weak. Eventually, I wouldn’t even go because it was not worth wasting my energy.
Abbey: Which we both know what you are describing is orthostatic intolerance. It’s the hallmark sign of Dysautonomia- you have the inability to remain in upright posture. Your body, in a sense, loses its ability to adjust to gravity, which is unfathomable until you experience it.
What’s an activity or chore that most healthy people take for granted which is difficult or impossible for you because of orthostatic intolerance?
Caroline: Showers. When I was homebound, I couldn’t even sit from weakness. When I would take a shower, I couldn't tolerate the heat or standing, so I did lukewarm or cold baths.
I still sometimes have to take naps after I shower because I’m so wiped. At least I can stand and take hot showers now though!
I did lose independence during this time. I couldn’t sit up long enough to drive to pick up food. I couldn’t live on campus like an average college student. I couldn’t do my own laundry. I couldn’t walk my dog. I began to feel like I was burdening my family, and I thought I’d lose my friends because I wasn’t able to visit them.
I felt like such a burden to my Mom for medical expenses and the attention I required. No one wants to feel like they’re making everyone else’s life more difficult.
There’s just a loss of control, so simple things able bodied people feel like they have control over, I just have to realize, “Oh I can’t do that today.”
Abbey: Thank you for being honest about the emotions accompanying that loss of independence. I think, too often, we skip ahead to the positivity without allowing people to experience the valid emotions present in loss.
So your mom was your caregiver when you were homebound? How did that affect your relationship?
Caroline: Yea, my mom was my caregiver, and because she has Lupus and RA, she works from home and had the time to help me.
Abbey: So you essentially had a disabled caregiver?!
Caroline: Yea. In a way, I got lucky. Most people don’t have someone in their life who also goes through chronic illness.
I don’t know what I’d do without her, because she was so empathetic and understood and knew what I needed when I needed it.
I was always nervous to tell people if I was feeling sick or faint, but she could tell without me even having to say it, and she would speak for me, help me get to a place where I could lay down, or talk to people and describe my situation better than I could so people would understand and accommodate.
We’re definitely closer. I didn’t understand her illness or comprehend how debilitating it can be. I was never rude to her about her illness, but I definitely didn’t get it until I went through my own.
Abbey: Does that give you compassion for the people you may sometimes feel frustrated with for not understanding?
Caroline: Yes, definitely. That’s what I’m saying. It gave me so much more patience, because it’s easy to get frustrated at people when they don’t understand or when people look at me when I get out of a handicap spot and say, “Oh she doesn’t look sick.”
I got my tattoo after my grandfather- because he’s so empathetic about all of this. It's a recording of him saying, "I love you, honey." When my mom and he picked me up from my dorm the day after I passed out- he had to step out of the car and take a moment.
I think it’s more difficult for people our age to understand because nobody expects to be this sick this young. And that’s what I wrote an essay on a long time ago. Often, when you think sick, you think old. I don’t personally know anyone my age who is sick. It’s just not something many young people have seen or encountered.
Abbey: Yes. Had I not gone through this, I’m pretty sure I would think that I had control over my health to a certain extent. I can understand why people assume. But if we educate with compassion and patience, we really can spread awareness.
What do you feel is important for people and communities to understand about Dysautonomia?
Caroline: That not every illness is visible; just because someone looks “healthy,” doesn’t mean they feel that way. I wish more people understood when I say “This is too much for me,” or, “This isn’t what’s best for my body,” I won’t just “be fine.”
I want more people to recognize that putting your body first is admirable rather than negative; it shouldn’t be met with “You’ll be fine,” or, “Push through it,” but rather, “I’m glad you’re listening to your body.”
Abbey: Yes. It is admirable. Is there anything you’ve discovered about yourself that you wouldn’t have otherwise- without illness? Basically, what is your silver lining?
Caroline: I went into college pre-med, but my pre-med courses weren’t available online once I became homebound.
So I took an English course, and it was the only thing I looked forward to... writing about it....
I wrote about my health for one of my papers, and I did my own writing on the side. I switched my major that summer, and it was definitely for the best!
And because I’ve established a good support system that doesn’t shut me down or invalidate my feelings about my illnesses, I feel more comfortable with myself now than I ever have.
But still, I have those times where I try to be the first one out of class so that none of my classmates see me getting into my car in a handicapped spot, or I put off telling new people of my symptoms because I don’t want to intimidate them.
So it’s give and take for me. Some days I’m confident, and I talk about it openly. Some days, I feel let down by my body.
Abbey: What do you want to say to people who are donating and supporting Glass Body Steel Soul?
Caroline: To those who have or will give: your support and awareness means that those who are experiencing symptoms but are undiagnosed, or misdiagnosed, might find an answer sooner.
It means those who are diagnosed can have the hope to one day live a more functional life, and for each patient, there’s a network—a community of people who can relate and share in experiences, and support each other. I feel as though the mental health aspect of having a chronic illness is just as important as diet, exercise, and meds. Knowing you’re not in it alone really does make a difference.