Kiki Schmalfuss. Image: Gretchen Ertl
This is a companion piece to how medical students with 'invisible' disabilities are improving patient care.
Kiki Schmalfuss has had disabling migraines since she was in fourth grade. Now as a second-year MD student at Harvard Medical School, her experience with chronic illness has made her deeply committed to improving equity and inclusion for both patients and clinicians with disabilities.
At HMS and in academic medicine there is growing awareness of the need for greater representation of doctors with disabilities to increase diversity in the field and ensure better outcomes for patients.
Schmalfuss believes that her identity as a person with a disability will help her be a more empathetic doctor who understands how the nuances of disability affect a person’s overall wellness. She is particularly interested in exploring health care policy and the disabled patient’s health care experience, with the ultimate goal of contributing to widespread, large-scale change in the field.
Harvard Medicine News spoke with Schmalfuss about what it’s like to be both a medical student with a disability and a patient.
Harvard Medicine News: Have you experienced being treated by a physician who's had a disability or similar illness?
Schmalfuss: Recently was the first time a physician disclosed to me that they also had migraines. It took off the weight of explaining everything. I didn't have to describe how it feels when you get a migraine — that the rug gets ripped out from under you because everything you planned for the day is gone.
With any disability, you don't have control over what's happening, so you have to be flexible about changing your life at a moment’s notice. It was nice that the doctor understood without me having to explain all of the nonmedical things that happen.
It felt empowering that I could focus on how treatment was going to fit into my life. Even though this doctor wasn’t a migraine specialist, they asked more about my migraines because they knew that migraines really impact how I live my life and are extremely relevant to the rest of my health.
I appreciated that I could talk to them honestly without having to carry the emotional burden of them not quite understanding the identity aspects of having a disability or a chronic illness.
HM News: What has medical school been like for you as you live with this condition?
Schmalfuss: I got lucky because I started a treatment plan with new medications right before medical school, which has gone really well. This has been a great year in comparison to a lot of other times of my life; the migraines have drastically decreased in intensity, length, and frequency.
At the same time, I have had to adjust my understanding of what I'm anticipating each day. When I had migraines more frequently, I would be wondering in the back of my head whether I was going to get a migraine and how that was going to impact my day. I still think about that, but not as often. I'm able to be more present because I'm not doing the mental gymnastics of constantly planning for having my meds ready to go, having a way to take care of myself if I have onset, and explaining the situation.
Since I can't really remember life without migraines, I still expect them and wonder when the next bad day is going to come. But it's been a lot better. The severity has been less, and I've been able to recover more quickly. I’ve been able to socialize more and dive deeper into my schoolwork.
It’s also been nice to be part of the disability community on campus, which is very supportive. I appreciate being with others who have disabilities and chronic illnesses and understand that disability might ebb and flow.
On my bad days, it’s been helpful to lean on my advisor, friends, and support systems. When things aren't going as planned, I have people who can help me through it and who are ready to work with me once I am feeling better.
HMNews: Can you talk about how you set up disability accommodations at HMS?
Schmalfuss: When I came to HMS, I wanted to be transparent from the beginning. As soon as I got here, I let my advisor know that this was part of my life. We worked out a plan for how we were going to tackle the worse times, the better times, and the uncertain times.
That was incredibly important because I felt like someone was in my corner helping me with the difficult administrative work that people with disabilities have to do. I was able to prepare to communicate with people who might not understand at first, and to think about how to navigate all of this in a place with a fast pace and high standards.
I have formal accommodations in place for the classroom and the clinical setting. Because of the disability services office at HMS, it's easy to put individualized plans in place.
But people here have been super willing and able to help me way beyond what is legally required as an accommodation. I see that as a testament to how great the teachers are and how important it is to communicate ahead of time.
HMNews: What do you think it would look like if you didn't have that kind of support?
Schmalfuss: Without the right accommodations or support, I would be physically unwell. That’s often what happens when people try to push through and try to hide their disability. Studies have shown that there’s a huge toll on people’s health because they're trying to overcome these systemic barriers and oppression. One person can't possibly do it alone.
When I was applying to medical school, I wondered how I, as one person, could succeed if I ended up in a place that didn’t have supports, where the system was working against me. I was also concerned about the limits I would need to push myself to get through an unsupportive environment, and how that would affect my health and well-being.
My big fear was that if I wasn’t given the right accommodations, I'd be viewed as not able to be a doctor, or that I would be pushed out or punished.
And if I didn't have any other students to lean on who feel the same way, I think I would feel alone.
HMNews: What would you say to your future colleagues?
Schmalfuss: I would want people like me to know that you can do it, and that HMS is a place where you will find support. That doctors with disabilities exist and have created a vibrant, powerful community, and that you have mentors and peers ready for you. I hope people continue to feel more welcomed, encouraged, and excited to enter the workforce, because we need more doctors with disabilities.
