How Do You Pursue a Medical Degree While Living with a Rare Disease? Exploring Unique Paths to Women's Empowerment in Conversation with Ina Baumann

Being a woman and working in STEM is no easy feat. Despite the changes observed over the past decades, the persistent gatekeeping in this field remains evident in the annual statistics, undoubtedly showcasing improvement yet still revealing a landscape fraught with obstacles, biases, and resignations.

The long journey towards total gender equity becomes even more apparent when confronted with the personal experiences of those who navigate STEM as women. And what happens when gender discrimination intersects with the challenges posed by a rare disease?

On this Women and Girls in Science Day, we had the privilege of exploring this question with Ina Baumann, a medical student living with a rare disease. In our conversation, we delved into her passion for medicine, talked about persisting gender biases, and underscored the importance of building healthy habits and a supportive community on the journey towards empowerment.

Hi, Ina, thank you for your time. You are currently a medical student at Münster University, Germany. Can you tell us your interests in this field and what you like the most about your degree?
I love how versatile medicine is. There is the science part where you need to think quickly and profoundly, where you need to figure out how all the symptoms come together and think of how to improve those. Medicine is also working with people, patients, and interdisciplinary teams, where it is important to listen, to be empathetic, and to find solutions together. You get to meet a whole bunch of different people. In medicine, you work practically and theoretically. You have to remain open-minded, creative, and adaptable because every day is somehow different, and you can never be sure what is going to happen or which story the next patient carries. In research, you get to figure out new things, to prove or disprove theories, to find some explanations on how things work in the human body, and to see where you can go from there. You can have an idea and maybe find a way to try it. You can provide explanations to people, and sometimes new medicines can be developed from there as they did in the last years if you think of rare diseases.

Based on your personal experience, how would you describe the situation of women in STEM? Can you provide insights into the environment you work in, both for yourself and the other women around you?
I think the experience varies widely, depending on the people and environment you work in. In medicine, there are many female doctors, which provides female medical students with role models to look up to. However, in other STEM fields, even having a female professor might not be given. At the same time, while the number of female medical students has increased, the representation of female department chiefs remains disproportionately low. Women working in STEM are more likely to be overlooked, interrupted while speaking, or subjected to sexual comments while performing their job duties. They are also more likely to be passed over for promotion or granted less research funding. Studies have shown that women are more likely to publish in lower-ranking journals and receive fewer citations. Moreover, there is a gender pay gap, and women may face discrimination in employment due to the possibility of getting pregnant. It also happens that patients assume the male person in the room is in charge, even if the female person is ranked higher. Different adjectives are also used for male and female behaviour; for example, to describe the same circumstance, you could hear that a woman "was too authoritative" while a man "showed clear communication." If a woman wants to choose a specialty that does not quite fit societal expectations, she will be asked multiple times if she is certain she wants to pursue that specialty and does not want to switch to a different one. Women will have to be better than their male peers to convince people that they are good at what they are doing.

While I have been lucky in most of my experiences, the fact that I say that I got lucky shows that we still have a long way to go. Gender equity in science is not something we can take for granted now.

You were diagnosed with ichthyosis right after birth. How has this diagnosis influenced your choice of degree? Additionally, could you share how living with a rare disease impacts your daily experience as a STEM student?
Being diagnosed with a rare genetic condition definitely was the reason I was interested in genetics. I did write a biology term paper in high school on how my genetic mutation leads to my symptoms, based on primary literature. I wasn't quite sure if I would rather study molecular biology or medicine at university, but I chose medicine because I wanted patient contact. I did conduct experimental genetic research on a rare disease for my MD thesis, though, so I guess I did get both in the end.

Living with ichthyosis does have an impact on my daily life as a STEM student at various levels. A few weeks after I started medical school, a works doctor who did not know me or my condition told me that I should stop attending medical school right away because, in their opinion, I would not be able to work in that profession with my skin condition anyway. Patients and classmates would stare at me and ask why my skin looks so weird if they are brave enough to ask. I would often overheat in classes or the library due to insufficient sweating, leading to troubles with temperature regulation. So, especially in summer, I have to plan how and when I will get to classes or the lab, knowing that overheating will knock me out for a few hours. When my skin is hurting or itching really badly, there were days when I had to leave work early or maybe had trouble sleeping that night, which could impact my mood or concentration. Before starting working in the lab for my MD thesis, I was worried about contaminating every single PCR sample with my scales. Right now, as I am preparing for my state examination, you will find me studying in the bathtub because I have to manage my time and energy level somehow.

However, there is also a bright side to things. I was asked after my first semester if I could have a look at a little baby in the ICU which had different-looking skin, because they were wondering if it was ichthyosis. And just this summer, I was able to improve the life of a little girl with ichthyosis and teach other doctors because I was the person with the most knowledge about that disease. I am the person people from the lab wanted to have at a satellite meeting between patients, researchers, and doctors because I combine all the perspectives, which has been valued multiple times so far. Knowing how it feels to be a patient, brings a different kind of empathy to the job, which makes it easier for me to connect with the patients (without sharing my story) and to help identify a patient’s needs.

I work with some amazing people who are considerate of my needs. They ask me if I need a moment, offer me more than I ask for, and respect my requirements. For instance, when it's too hot outside, they suggest that I work from home or do whatever else I need to take care of myself. They are curious, thoughtful, and have practical solutions. One of my favourite experiences with them was when I was concerned about contaminating the PCR samples. They responded by saying: "If we have the feeling this could be happening, we will just get the primers for the gene your variants are located on and check if that’s actually happening."

Living with a rare disease affects my life as a STEM student in various ways. However, it depends on what I choose to focus on and whether the environment I'm in allows me to do so freely.

What do you find beneficial in overcoming challenges?
It is important for me to set a good baseline, so I go for things that make me feel good and are fun, like spending time with my horse, engaging in sports, reading, and meeting friends. Likewise, it is vital to surround yourself with people who will listen to you, won’t judge you, tell you the truth, support you, believe in you, and perhaps remind you of how awesome you are and what challenges you have already overcome, if you forget. If I feel insecure about my rare disease, I watch my favourite movie "The Greatest Showman"; to me, it feels really empowering and always boosts my confidence.

Do you plan to continue on your STEM path after completing your degree? Could you share your wishes and concerns regarding your professional future?
After finishing medical school, I want to start residency to become a paediatrician. However, I have many other ideas about what I could do additionally, such as continuing to work in research, maybe pursuing a PhD; focusing on rare diseases to improve diagnostics and therapeutic approaches; possibly becoming a geneticist or specialising in paediatric dermatology; or training doctors on how to manage rare diseases on an international level. I don’t think it will be easy to decide what I want to prioritise, but I will figure it out along the way. At the same time, I am a little concerned about how taking care of my skin and working in a hospital setting will fit together.

I wish for a supportive work environment where people are not held back because of their gender or having a rare disease. I wish for colleagues who have each other’s backs, value teamwork, and face challenges together. I wish for workplaces that are adaptable to accommodate different needs and challenges. I wish for people to be open-minded, creative, and willing to try new approaches, even in areas where society tells us it is not typically done that way because we should perhaps embrace some changes.

How can we, as a society, contribute to improving the situation for women in STEM?
In my opinion, the most important thing is reflecting on ourselves—our thoughts, actions, language—and checking our biases and privileges. This is not about shaming ourselves for thoughts or actions influenced by bias, as we were all socialised in a biased society. It's about using reflection as an opportunity to learn from ourselves and others, to grow, and to break out of stereotypical thinking. The truth is that it's easier for the human brain to think in categories, a mechanism that secured our survival centuries ago.

Perhaps we can use the free brain capacity available today to ask ourselves questions like: Would I treat that person differently if they were male? Would I use different adjectives to describe that behaviour if they were male? Would I have more faith in that person and their abilities if they were male? Would I have different thoughts about offering that person the job or funding if they were male? If the answer is yes to any of those questions, reflect on where those thoughts are coming from.

And this works the same for people with chronic illnesses and disabilities. Get creative, show initiative, ask questions, but remember, no one owes you sharing their personal story. Be brave enough to challenge societal norms and expectations. Create an environment that is accessible and transparent, where people feel safe to discuss arising concerns or problems, a place where people know they will be heard, and the focus will be on finding a solution. Acknowledge the challenges people are facing. Take responsibility and ask yourself, how can I reduce the barrier held up by bias?

If you had to offer advice to a young girl living with a rare disease who aspires to pursue a STEM degree, what would it be?
Believe in yourself and be confident. You will probably face more challenges than others to get to the same point, but this will give you an opportunity to build resilience and mental strength, which others might not develop to that extent. Accept your rare disease as part of yourself and embrace the skills and perspectives that come with it. At the same time, remember that you are so much more than a girl and your rare disease; both are not the only things to define you. If people reject you, judge you, or mistreat you based on your rare disease or being a woman, that says a lot about them but not about you. Be yourself and don’t start to believe you have to change to fit in. Address your concerns and needs. So, stand up for yourself and go chase your dreams.