Trigger warning: Violence against women, domestic abuse
I try my best not to wade into sensitive topics that don’t relate to mast cell disease when I am functioning in my capacity as the author of MastAttack. As an individual, I have no problem discussing my personal views and opinions. But as a figure in the rare disease community, I avoid it at all costs. Our lives are stressful enough as it is.
Despite this, I feel compelled to write about something that has weighed heavily on my mind for the last several weeks. The following post has no information about mast cell disease and reflects my personal experience. It includes description of graphic violence and domestic abuse.
Lisa is not my full name. My full name is Lisa Lillian. At some point in college, my student record hyphenated my name to Lisa-Lillian. I never corrected it. Lisa-Lillian is the name on my diplomas and the name I use professionally. I like the idea of having two almost distinct personas with a clear division between my profession and my private life.
I was named after my grandmother. Her name was Eugenia Lillian Hannagan Klimas. She mostly went by Lily. I don’t know if she went by Eugenia or Eugenia Lillian at work. I don’t know if she had two personas. This is the least of the things I would like to know about this person that I will never, ever know.
My grandmother was born on December 8, 1919, in Ireland. A number of years later, I would also be born on December 8. I share with this woman my name, my birthday, and my father.
She was adopted by an American couple of French Canadian descent and lived for the latter part of her childhood north of Boston. She married and took the name Klimas. The marriage was unstable and violent. She eventually left but never divorced her husband. I don’t know for sure why but it was culturally very unusual for Irish women to divorce at that time.
She had other relationships after leaving her husband. On January 1, 1969, my grandmother’s boyfriend attacked her in their apartment. He stabbed her repeatedly in the kitchen. She ran into the backyard and bled to death before help arrived. She was 49 years old. I am connected to this person despite the fact that I know almost nothing about her and never will.
The last several weeks have been downright frightening for me as a woman. There has been a lot of conversation about women and women’s bodies. There has been a lot of conversation about what constitutes assault, something I cannot even believe requires explanation in this world where we can readily find information in seconds. There has been a lot of conversation about what language is “a joke” and how women should know how to “take a joke” and “not be so sensitive”. It is nauseating to think about all the things that have been said, some of them by people I trusted to understand the rights and agency of women.
The fact is that women are treated differently than men in many situations, even in company that you would expect to respect parity. The path of my experience with the medical establishment has been defined at least partially by the fact that I am a woman.
As a woman, there is an expectation of hysteria that you must overcome to get to a baseline level of respect. A great many providers assume that women are embellishing or mistaken when they describe their health issues. Many women that pursue treatment for chronic health issues are told that they need to “stop focusing on these issues because you are making them worse”. We are told that our physical issues are in fact due to anxiety or depression (I was). Our health problems are routinely mischaracterized (mine were). At best, they may be recorded as psychosomatic; at worse, we may be accused of malingering or Munchausen’s (I was).
I have had the same care team for several years. They know me pretty well. I am fortunate that they respect me and my understanding both of my body and of mast cell disease. I have a long track record of being cooperative and compliant. I have a mountain of documentation demonstrating that I have mast cell disease and other chronic illnesses.
Despite this, every single time I need to directly ask for something, I am scared. I am scared that they will reveal that all along they have thought I was lying about my health. I am scared that they will refuse whatever I have asked for. I am scared that they will fire me as a patient. I think paranoid is a fair characterization. I understand logically that I have done nothing to warrant such treatment, and that I have no reason to expect it from this team, but I’m still scared anyway. I have been scarred by years of providers dismissing my concerns or outright calling me a liar while I suffered with a condition they didn’t believe was even real.
As a woman, I struggle to present myself as not being weak despite the fact that I am assertive and not afraid of confrontation. I am a crier though, especially when I’m frustrated. That immediately turns into me being a hysterical woman, as if I have no right to be emotional. Emotional displays are considered hysterical in women, a defect that should have been eliminated by now.
On days that I work, I frequently encounter street harassment. I walk past people and they make comments about my body. I don’t want to make eye contact but then if I don’t, they sometimes try to get in my way to force me to run into them. If I get past them without acknowledging them, then they are talking about how much of a stuck up bitch I am for not even saying hello. Because in today’s society, there is also an expectation that women be polite even to people who mistreat, abuse or actively try to harm us.
There is no way for me to avoid situations like this because I do nothing to provoke them. I just happen to walk by. I walk by with my earbuds in, eyes down, and all I can do is hope that on this day, no one is going to tell me that I have a nice rack or that they would love to slap that ass. It is stressful and upsetting. And it is the norm. There is no public outrage that a man can sit next to me on the train and lean in close and try to get a response from me while I try my best to pretend he’s not there. There is no public outrage when a man yells at me at the train station because I don’t respond to his questions.
When I was 20, I went to Paris with my 15 year old sister. We were harassed relentlessly by two men while hundreds of people stood there, looking away. In Italy, a man stuck his hand up my skirt and started masturbating. A few years later, when I went back to Rome, a man sitting across from me on the train was openly masturbating. No one said a thing.
I can never assume that a comment was just a comment. I can never assume that it won’t progress to a physical altercation. I can never assume that if it does progress to an altercation that people will help me. This world is already inherently dangerous for women. We cannot risk that it becomes even more dangerous.
A quote often attributed to Margaret Atwood describes this risk well: “Men are afraid that women will laugh at them. Women are afraid that men will kill them.” Every time I am marginalized for being a woman, I am reminded of the fact that a woman with my name and birthday was murdered in a domestic assault.
Be careful. Be aware. Help where you can.