It’s Time to Call Out Sexism and Sexual Harassment in the Patient World

We need to talk about sexual harassment of women in patient advocacy spaces.

It happens all the time.

Patient advocates and activists work on a variety of projects. The hard thing, though, is that despite moving in different illness-specific subsets, we connect very easily online with patients from other walks of life. This is great for networking, but not always for personal safety or care.

Just like there is marginalization in being a chronic patient, there is privilege in our communities, too — especially in the white cishet male realm. Now, not everyone in that subset of patient communities has a problem with sexual harassing others, but it is incredibly common. Worse yet, because we’re so connected online, we all tend to run into the same people using sexual harassment to interact with femmes/women.

Yes, it is a symptom of living in our society. As femmes/women/etc, we are sexualized when we don’t need to be. It’s so common that to cope, many of us try to play down this behavior and that does extra for those of us in patient communities.

In the last 2+ years, a saga has developed in one of these communities. In reality, it’s gone on longer than that, but this is the amount of time other people have really been aware and have talked about it together. I will leave him nameless here.

A male has been continually sexually harassing femmes/women within patient communities. This started with questionable comments of a ‘playful’ nature and escalated over time. For me, the first time I was on the receiving end of one of these comments, I actually responded very negatively. He responded and said something akin to how this was just how he interacted with people, so I let it go.

That doesn’t mean comments that were made felt fine to hear or to be on the receiving end of.

During the summer of 2015, I recognized that this person continually made these comments, only stronger, towards other young women. This is when I began to question the comments I had received and heard from this person.

I began to recognize the harassment going on.

(It didn’t help that during this time this person also harassed me for one of my mental health issues, but that’s not the point of this post.)

At a conference, he kept ogling a friend and then cornered her on the last day of the conference, right as she was leaving. It was then that I learned her had been sending inappropriate messages to her for quite some time. I had negative interactions with him there as well. This was all brought up to people in charge of said conference.

Their response was to blame victims for not knowing how to act around the ‘opposite sex’ (their gender identity erasing words, not mine).

Eventually, this person was relieved of their post in this organization or stepped down as a result of all this coming to light. In the interim, though, other patients — patients who should know better — made excuses for this middle-aged man and his actions towards girls in their teens and early 20's.

This is wrong.

After talking to other femmes/women about sexual harassment in patient communities, nearly every person — over a dozen — named this same man as someone who has sexually harassed them personally. They’ve stopped me as I anonymously share a story to ask if it’s him. With so many men involved in patient communities, this is striking.

This situation with this person has pushed some amazing advocates and activists away from communities and online work — or made them feel the need to pull back and be less present. The fact that this is continually happening with no conversation and very-few-to-no consequences for this person is astonishing and harmful for victims.

Since then, he’s made similar ‘playful’ comments on a fifth grader’s photo.

It’s disgusting.

I’m tired of talking to people and hearing that they, too, have dealt with sexual harassment or illness competitions at the hands of white privileged males in patient communities. I’m tired of hearing organizations and conferences sweep this stuff under the rug because of the possibility of ‘bad press’ or whatever.

I’m tired of people taking the side of the offender while blaming the victim.

The victim blaming in our society makes me so angry, so upset. I am livid that we’ve allowed this type of thing to occur in our patient communities out of politeness and not wanting to make waves. Those of us who are female or non-cishet already make ourselves smaller and less significant to allow male voices to pervade communities.

It’s a common occurrence in the ‘outside world,’ but why are we allowing this to happen in our activism circles? We fight stigmas for a living and fight against ableism and sexism in so many forms — why aren’t we calling out those within our communities who perpetuate these stigmas and sexism?

Doesn’t that just make us hypocrites??

I feel like this is a good example of why I like the disability justice/rights communities better than illness ones — people don’t make excuses for bigotry, sexism, and sexual violence in the former. We call it out. We don’t play nice or hide behind a smile or just ignore comments — we call it out… especially if someone is making inappropriate comments on even chronically ill under-aged girls’ profiles.

We call it out.

Some have stood up for this person because we need more male voices in patient communities. I don’t discount that this is true. However, it isn’t true if including them harms others. These voices are not important enough to allow men to continually harass or violate the safety of young women or non-cishet people. Male voices need to be heard, but not over victims of their ridiculous sexist comments, sexual harassment, and stalking.

We cannot allow this to continue.

People who call these issues out aren’t trying to stage a witch hunt. That’s not what I’m after. I’m not vindictive or hateful on that level and, by golly, I have enough going on with my health and my things I’m running and doing that I don’t need the drama. None of us do.

As a society — whether as a whole or as patient groups — we cannot make excuses for sexism or sexual harassment. We must call these issues out. Just like with ableism we experiences at the hands of people who don’t understand, we have to call out this behavior so that it can be corrected. Ignoring it as a courtesy only allows it to get worse and for more people to be violated.

And again, just like with our illnesses, sharing our stories helps people feel less alone. When I’ve shared my experiences with this person and experiences I know of with people, they have felt redeemed and like their gut reactions to comments or questions have been validated.

Many people I know were up in arms about sexual harassment happening from our now-president during the election cycle. Why are not concerned about it when it’s directly affecting our friends and colleagues? Because it’s not being done by or to someone famous?

That’s a sign of hypocrisy.

We have to fight oppression wherever it meets us. Right now, it’s meeting us at home, in our safe spaces. Like a horror movie, we can either lock the door and run upstairs to try to hide from it — or we grab a proverbial baseball bat and chase this oppression off our property.

What do you choose?


Kirsten is a writer, sexuality educator, and chronic illness/disability activist in Wisconsin. She runs Chronic Sex which highlights how illnesses and disabilities affect ‘Quality of Life’ issues such as self-love, self-care, relationships, sexuality, and sex.

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