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The Hysteria Project, Berlin (2026)

11/07/2024

At the end of May, I went to Graz to be the keynote speaker for the Endometriosis (R)Evolution: Making the Invisible Visible Conference. It was a very meaningful experience for me; I was invited by Alekszandra Rokvity, who was one of my storytellers in the Hysteria Project and organized the conference. I was also there with people from the Endo Violence Collective (I'm an active participant in that for the past year) and the Project, an EU wide art and narrative medicine project. And my cousin Sarah Einstein was there leading a powerful writing workshop about the collage essay and illness/disability.

I'm so proud of the work I've been doing the past few years, in community with so many other wonderful people committed to making a better future for everyone with endometriosis.

You can watch my talk here:
https://unitube.uni-graz.at/portal/aufzeichnungen.html?id=f1fef1f5-4110-4c4c-8308-4bcce2ca9210

28/03/2024

Please help me with a new project about our experiences with medical gaslighting.

What words do you associate with "Hysterical"?

Now that I have a new studio, I'm starting some new work, and I'm asking for your help to get it started. This will be a text-based work, so I'm asking for your associations. The ones I can think of are: pain, girl, woman, liar, victim.

Post your associations in the comments, or send me a message.

I'm really grateful to be part of a community that gives so much to each other! And I'm really excited to start something new (and to have a space to do it in!) but I don't want to say too much because honestly artmaking is so much about failure that I could fall on my face with this. But I'll let you know how it goes.

Thank you! I look forward to reading your

-Rachael

(ID: robins egg blue background with a red border, with black text reading What words do you associate with "Hysterical"? Hysterical is in red. underneath is a black drawing of a heart-shaped uterus with one fat fallopian tube)

10/02/2024

Black History Month is a good time to recognize the victims of medical racism, and honor the people fighting against it by raising their voices.

, , , , , ,

08/01/2024

Dr. LJ (she/her, 42, Black in US), with endometriosis
These slides only scratch the surface of Dr. LJ's story Click through the link in my bio to read her whole journey to health.

1. It was several years of just begging for help. I remember being in tears, going into the doctor’s office and they're like, “Here's the girl who’s always complaining.”

2. My issue started at the age of 14. It showed up as period pain. What happened for me as a Black women, we push past the pain. If we talk about pain it's a form of weakness. I didn't get to complain about it and I just lived in pain. I lived in silence.

3. It was several years of just begging for help. I remember being in tears, going into the doctor’s office and they're like, “Here's the girl who’s always complaining.” They're putting you on the list as a hypochondriac. Also, as a woman of color, maybe I'd get a half dosage because at medical school they're saying, that Black people don't need as much medication.

4. I'm still trying to live a normal life and this is before I'm sharing my story openly. It was like, if I couldn't make it to girls' night I'm just like, “Hey, guys. I'm busy. I'm tired.” Nobody wanted to hear about your period pain all the time. There was a lot of living in silence.

5. My ex-husband didn't get it. Painful s*x was a big thing for me, and so, if I wasn't having s*x with my ex-husband it was more like, “you're not into me. You're not doing your wifely duties,”

6. I was in excruciating pain. I had nothing to do but search the internet every night to figure out what the heck what was going on with my body. I took it in and the doctors were like you know what, you may be on to something. We did a bunch of testing, procedures, etc. That's how I got my diagnosis at 30 years old.

7. I was doing some research and someone mentioned she had PCOS and she had switched to a keto-based diet. I had never read a lot about it. I went down that rabbit hole and that is where it turned my life around. By the time I got to my seven-month preop for the hysterectomy, everything that was there had gotten better.

03/01/2024

This is LJ, creator of .endo.expert , who shared her story with me fairly early on. She talks about growing up a pastor's kid, and how that affected her attitude toward her body and health, medical racism, her eventual diagnosis with endometriosis, and how she came to her programs of a holistic approach of treating endometriosis.

Click through the link in my bio to her story; it's quite a rollercoaster ride, and I really like the way she emphasizes that she had to find what worked for her body. Listening to our bodies, and figuring out what works for us, as opposed to blindly following what doctors (or society) tells us is a really difficult lesson to learn.

03/10/2023

This is part of Toni's story, which deals with her experience with PCOS and how it's affected her sense of self and her womanhood. It's a powerful story. all of these issues have the potential to affect our sense of self and our gender identities in such profound ways. Please go to the website (link in bio) and read her story.

ID: red (or black) text on lavender background, small black uterus icon at bottom.

1. What even is a woman? What even makes us a woman? It's definitely not how much hair we do or don't have. That is not what makes us a woman, but society just ingrains in us: this is what you should look like. This is what you shouldn't look like. Toni (she/her, 33, biracial (Black/White) from US, in Germany) with PCOS

2. My period was late by like a week and I got really nervous. I took a pregnancy test, and I wasn't pregnant. Then another week passes, and nothing, and another week passes, and nothing. Next thing I know, I hadn't had a period in like a year, it just stopped.

3. Around this time, I started growing hair on my chest, on my breast, on my stomach, back, literally all over my body in places that most women normally don't grow thick, dark hair.I was having to shave my face every day, and put makeup on, and wear my hair down just to camouflage it.

4. I went to a doctor's office and it was a woman. I remember because she was not very nice. I remember her just saying, "I'm going to put you on birth control to help regulate your period." That was pretty much it. It wasn't , "Let's do some tests and stuff."I'd never used birth control before. Talk about traumatic. It fu**ed up my hormones so bad that every day I just cried. I didn't know why.

5. The hair just makes me feel less of a woman. I feel so weird saying that because so much of my work is based on combating stereotypical gender roles. Then I'm sitting here like,"I feel less a woman," but like, "What even is a woman? What even makes us a woman?“ It's definitely not how much hair we do or don't have. That is not what makes us a woman, but society just ingrains in us: This is what you should look like. This is what you shouldn't look like.

20/09/2023

It's PCOS awareness month! This is Toni (she/her, 33, biracial Black/White from US, in Germany) with PCOS. Notice that the ovaries on this collage don't have cysts: that's because PCOS is a hormonal disorder, and not everyone develops the cysts for which it is named.

Toni's story shows how PCOS affects her life, and her sense of womanhood. Please go and read it (link in bio).

ID: Collage of a lumpy grayish-purple uterus, with purple fallopian tubes and green ovaries and va**na. It's on a gold metallic embossed background, in a lasercut plexiglass frame with thin gold stripes.

07/09/2023

This is the beginning of Clare's story of dealing with lichen sclerosus, which led to v***al cancer. Please go to the link in bio to read her full story. And check your v***a monthly for changes!

Slides are pale green with dark grayish purple text, with heart-shaped uterus logo at the bottom.

1.I never used the right words, because growing up it was “private or down there or va**na.” So as I was speaking to GP's that was what I would use, them words. And they never used the word v***a back to me either. -Clare (she/her, 50, White, in England), Lichen Sclerosus, Vulval Cancer

2.My mum only found out, because she would hear me crying in the toilet. Having lichen sclerosus is quite painful when you go to the toilet if you've got any cuts or tears. She would ask me what was wrong and I just said it was burning. After a few times of hearing that she took me to the doctor. The GP just said that I had cystitis.

3.I did go for my regular smear tests throughout my life, so I would be seen by a nurse for that and nothing was ever said then. As time went on, the symptoms started to affect me a bit more. I did go and see a GP but my v***a was never looked at, and I was automatically told I had a yeast infection, and I was given treatment for that.

4.I never used the right words, because growing up it was “private or down there or va**na.” So as I was speaking to GP's that was what I would use, them words. And they never used the word v***a back to me either. And I don’t think I was being really clear about what my symptoms were.

5.I then noticed that the tear that I had started to change and it started to look more like an ulcer and I thought I must go back to the GP again but for all the times I've been and been told it was thrush and I just couldn't be bothered to go.

6. Within about three months, I noticed that the ulcer started to get bigger. So I thought well I've got to go back to the GP. She did look and she said it was herpes and to go to a s*xual health centre. I wouldn't have gone because I'd been with my husband at the time more than 25 years. She asked me how many partners I've had and I said “Just my husband.” So she looked again and then said “Actually it could be something called v***al cancer.”

05/09/2023

It's gynecological cancer month. This is Clare (she/her, 50, White, in England), ***alcancerukawareness , with lichen sclerosus and v***al cancer. She's a fantastic advocate for v***al cancer and lichen sclerosus awareness.

Lichen sclerosus is often misdiagnosed, but it can lead to v***al cancer. Familiarize yourself with the symptoms of both, and do a monthly v***a check for any changes!

Please go read her story on the website (link in bio). And if you have either lichen sclerosus or v***al cancer, please reach out, I'd love to listen to your stories and add them to the archive.

ID: Collage of a green lacy v***a with multicolor lichen sclerosus and v***al cancer lesions, on a gold metallic background.

On a more personal note: this was my first ***a collage that I've done for The Hysteria Project, and I'm very proud of it! More will be coming. (And I should be posting a little more regularly now.)

***alcancer ***aart

29/06/2023

This is Alex's portrait, which is fully from my imagination, as he's still waiting for his first laparoscopy. The silver background is what indicates his gender. I think I say this about every uterus I make, but it's one of my favorite collages. I cannot help it, I love them all. They're beautiful!

Please find Alex's story in the link in my bio.

It's a collage of a red, kind of meaty-but-lacey uterus with a black interior, with gray ovaries, purpley-gray fallopian tubes, on a silver metallic background with copper stripes. The collage is in a laser-cut clear plexiglass frame with metallic stripes.

***rstories ***rstories

27/06/2023

Alex was the first trans man to participate in The Hysteria Project, and his story shows the added complexity being trans adds to pursueing gynecological care. We need more research into how hormones affect the disorders we have, and we need better training for gynecologists to treat all patients with the dignity, care, and respect they deserve. To read more of his story, please go to the link in my bio.

Slides:
1.I don't think there's really that kind of intersectionality with understanding trans men or non-binary people, and with endometriosis and how they'll transition and how their hormones will affect the endometriosis, how their surgeries might affect endometriosis. -Alex (he/him, 21, White, in England), Endometriosis

2. I first got my period when I was 10. From age 11, it was just a nightmare to control. My parents just thought, “He's getting used to it. He'll be fine. It's just normal. Period pain is normal.”

3. We actually had to pay privately to go an endometriosis specialist. He was really nice, but when I introduced myself, I told him that I'm a transgender man. He said that he's booked with transgender men before, but there was still misgendering going on, and not really asking me if it was okay to perform examinations, and how much dysphoria I would experience with that.

4. In the UK, gender identity clinic waitlists are about five years now. I got my referral in 2019 and I'm still waiting for my first appointment. I'm still waiting to even be diagnosed with dysphoria as they do in England. Then they will decide whether I can transition, which is ridiculous because I shouldn't have someone else decide whether I should transition.

5. I don't think there's really that kind of intersectionality with understanding trans men or non-binary people, and with endometriosis and how they'll transition and how their hormones will affect the endometriosis, how their surgeries might affect endometriosis. I have no idea whether if going on to testosterone will make my endometriosis worse or better.

***rstories

22/06/2023

This is Jenn (she/her, 44, White in US) with uterine polyps, ovarian cysts, PMDD, fibromyalgia and MECFS. She has started an online group for q***r people trying to conceive, and her story is definitely worth a read. You can find it on my website.

ID: Collage of a brown uterus with multiple polyps, brown stripey fallopian tubes, white-ish ovaries, one of which has a cyst, and a beige-ish va**na. The collage is on a gold leaf cutout background, and mounted in a lasercut plexiglass frame with thin gold stripes.

***rstories

The Hysteria Project

11/07/2024

28/03/2024

10/02/2024

08/01/2024

03/01/2024

03/10/2023

20/09/2023

07/09/2023

05/09/2023

29/06/2023

27/06/2023

22/06/2023

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