Student combats misinformation on chronic illness with zine

By Joanne Sally Mero

Alexandra MacMillan ’18 is one of a handful of students at Lewis & Clark living with postural orthostatic tachycardia syndrome (POTS). POTS is a chronic illness that causes dizziness and fainting upon standing due to poor blood circulation in the lower part of one’s body.

POTS is a common illness with many different symptoms experienced to different degrees of severity. A few common symptoms include nausea, fatigue, light and noise sensitivity and difficulty concentrating.

“It’s so pronounced for young women and young women are 90 percent of people with POTS,” MacMillan said.

She expressed her frustration in being brushed off by doctors due to gender and age.

“It takes a really long time (to get diagnosed) because the medical profession … doesn’t listen to women in pain,” MacMillan said.

Up until her diagnosis, MacMillan thought everyone around her struggled with the same pain she felt every day. It was her understanding that just being alive was uncomfortable.

“Getting diagnosed for me was kind of like a re-writing of my history,” MacMillan said. “It was going through all of these times I was in immense pain and being like, ‘Oh, that’s why.’ There was a reason I felt that and other people didn’t.”

MacMillan was diagnosed with POTS early on this spring semester. To process her thoughts on POTS, MacMillan began illustrating comics in a journalistic format. Only a few days after her diagnosis, MacMillan’s art professor assigned her class to create zines.

“This is actually a really great platform for getting an understanding of this,” MacMillan said. “I can just give people a zine and they can understand.”

On particularly bad days, like when she would have to wear sunglasses indoors due to extreme light sensitivity, MacMillan felt embarrassed and wished her classmates knew about her illness.

“Be aware that there are a lot of people around you who may be in pain or going through stuff,” MacMillan said. “That doesn’t just mean chronic illness. That can mean anything. Just be kind to people no matter what because you never know what may be hanging on their back.”

What started out as an art assignment quickly turned into a means of communicating a complicated illness in a simplified easy-to-understand manner. MacMillan discovered a large Facebook group for individuals living with POTS. After such a positive response from classmates, she decided to post her zine to the group’s discussion page. She received an overwhelming number of encouraging responses. Hundreds of people commented on her post asking if they could order copies or if there was a digital copy available. Some even claimed MacMillan’s zine was the best explanation they had seen for POTS.

“I really want to help (others with chronic illnesses) tell their stories through my illustrations,” MacMillan said.

MacMillan encourages anyone who is struggling to communicate their illness with others to reach out to her, as she is more than happy to create a more easily digestible medium. She is currently working on a diabetes zine for a friend and hopes to expand her work with other illnesses.

“I think there’s something really powerful about having your truth written on a piece of paper and being able to give it to other people.”