Our Blog

I did my best to mainly include significant/unique perspectives, but I have a lot of thoughts!

What impact do you hope to make?

I hope to:
1. Convey the patient experience of those with MdDS to healthcare providers
2. Spread awareness about the condition among healthcare professionals and the public
3. Provide hope to other young people with MdDS — your goals and dreams are still achievable!

How did you feel when you found a community of others like you?

Like many people with undiagnosed chronic illnesses, looking for answers, I found out about MdDS on the Internet. When I saw the symptoms of MdDS, everything instantly clicked. Just knowing that there was a real condition that described how I felt was so validating in itself. I mean, it does sound super weird when I tell someone that I’ve had a rocking sensation ever since I flew on a plane two years ago! Admittedly, though, there is a special kind of loneliness that comes with having a chronic illness that is difficult to diagnose. Not only are your symptoms confusing and poorly understood by others, but also the lack of a diagnosis creates a barrier to fully forming community with others who share your experiences. This really goes to show how powerful awareness among healthcare providers can be; even if a diagnosis can’t provide an established treatment path or cure, it can provide patients with validation and community, which are so important when living with these types of illnesses.

What has been the hardest part of having MdDS?

The symptoms of MdDS can be especially frustrating for a student with a demanding schedule. I remember trying to read books at my desk and realizing that I had not comprehended a single sentence because my mind was so occupied by the rocking sensation. I would count down the minutes to the end of lectures because sitting through them made me feel nauseated. Doing things that I took for granted, like eating, running, or simply working a full day were very challenging for some time.

Even more impactful than my symptoms themselves, though, was how they affected me mentally. I had a huge, ambitious goal that I had been working towards for years: to attend a dual MD/PhD program. Upon the onset of my MdDS, it felt like that goal was slipping through my fingers. That loss of control was very difficult to cope with, and it took time for me to fully believe in that dream again. When I was applying to MD/PhD programs this past year, I made the difficult and risky decision to discuss my experience with MdDS, though I only described it as an undiagnosed neurovestibular condition. While I knew that I would benefit from enrolling at a program that valued my experiences rather than viewed them as a potential liability, I was afraid that sharing about an undiagnosed (at the time) condition would close doors to potential opportunities. That consideration was an extra burden that I carried with me throughout the past year that most applicants do not experience.

My prospective career path also framed my self-perception and my interactions with physicians. As a scientist, I always want to have a deep explanation for something that a patient is experiencing. Having a disease without this explanation made me have a lot of self doubt. I questioned my own experiences, wondering if this was really “all in my head.” As a prospective physician, when I would meet with physicians, I wanted to establish a good reputation. I didn’t want to be seen as a “difficult patient.” While I would bring up MdDS and provide them with resources from the MdDS Foundation, I didn’t try to push them to give me a diagnosis. This resulted in physicians defaulting to disease types with which they were more familiar, like migraine. The reframing of my chief complaint resulted in my vestibular symptoms being largely discounted.

How have things gotten better?

While MdDS can be rather persistent, and it definitely has been for me, I have thankfully experienced a general reduction in symptoms over time. My symptoms continue to fluctuate but are usually mild now.

I received my diagnosis two years after the onset of my symptoms after a neurologist referred me to a physical therapist who specializes in neurological conditions. She was my first provider who brought up MdDS before I did, which made me feel extremely validated. She gave me some exercises and practices that allow me to improve my focus. Using a walking pad, having something to support the back of my head against while I’m sitting down, and squeezing a stress ball are some habits that I’ve found helpful.

I am going to begin my MD/PhD training at one of my top choice programs this upcoming summer, and I couldn’t be more excited! Especially in the context of the uncertainty that I felt when I first developed MdDS, I feel so privileged and grateful to have this opportunity. Having MdDS really illuminated how much is still unknown about the body, and now, I am especially driven to conduct medical research that provides greater insight into disease mechanisms.

What personal message do you want to share?

To patients: While we are certainly lacking a lot of medical knowledge, understand that at the same time, there is currently much more medical knowledge available than any physician can easily recall. No physician is going to be familiar with every rare condition, but a good physician will be willing to admit what they don’t know and be open to learning from new information. So, it’s very important to be your own advocate, and resources from the MdDS Foundation are very helpful in that regard!

To providers: Listen to your patients. It takes a lot of bravery to approach a medical professional when experiencing a kind of illness that is often discounted and dismissed. Work together with your patients to figure out how you can help them manage the symptoms that most interfere with them achieving their goals. Don’t be afraid of explanations that you weren’t previously taught; if presented with something new, view it as an opportunity to learn rather than a challenge to your capabilities. As one physician told me, it’s called “practicing” medicine for a reason; you should always enter the clinic with the intention of becoming a better provider and advocate for your patients.

Sydney
Motion-triggered
Age at onset: Under 30