In the next installation of Overexpressed Asks, we feature the brave and honest voice of Rachel Kraus.
Rachel Kraus is a Professor of Sociology at Ball State University in Muncie, IN (about an hour north of Indianapolis) who specializes in gender, identity, and religion/spirituality. She earned her BA in Sociology from the University of Cincinnati, her MPA from the University of South Carolina, and her MA and PhD in Sociology from Purdue University. She has worked at Ball State University since 2005 and regularly teaches classes in gender, research methods (emphasizing various qualitative approaches) and religion. Rachel has been living with metastatic breast cancer since 2009. Since 2019, she has been conducting formal research (surveys and interviews) with other women living with metastatic breast cancer.
Read her important essay “Breast cancer awareness campaigns can do a better job supporting women who’ve received a stage 4 diagnosis, instead of focusing only on early detection and ‘beating cancer.’” featured in The Conversation.
Using a metaphor or simile, describe your MBC journey. (My MBC journey is… or My MBC is like…)
My MBC journey is like a roller coaster that never ends. There are some extreme highs and deep lows, but the ride never stops.
Using words and phrases, describe what it is like to live with MBC.
Living with MBC is like a background hum. It is always there regardless of what is going on. Sometimes it is very low and is front and center. I call this “doing the disease.” “Doing the disease” is when I have slews of doctor appointments and/or treatments. I’m doing something related to managing cancer. Other times cancer is in the background and I can live a “relatively” normal life. I’m not experiencing side effects and I have a break in between treatments and/or doctor appointments.
What is one word/idea used in describing MBC that you appreciate? In two sentences, describe why.
I’m not sure I understand this question. I’ve been living with MBC for almost 13 years. There isn’t anything I appreciate about it. Of course, I have met some wonderful women, built some friendships, feel a sense of belonging, and I’ve learned how to ask for help and get help when I need it (mostly related to cancer). But, in all honesty, I would still trade all of it away to not have MBC. I don’t see cancer as a “blessing in disguise.” Maybe I’m “still” too angry or bitter, especially how long I’ve lived with this, but I wouldn’t wish this on anyone. The women who I have met through this disease also have the disease, and I wish very much that they didn’t have to go through what so many of us go through.
What is one MBC word/idea that you would like to see changed? In two sentences, describe why this change is so important.
SURVIVOR! I don’t think of myself as a survivor. I wish that word would stop being used to describe people with MBC. In my opinion, a survivor is someone who goes through something and comes out the other side just “fine.” There is no light at the end of the tunnel for MBC. We aren’t treated and done. We are always in treatment or on scan/test schedules and/or dealing with side effects. There is no other side for people with MBC. I’m not even sure I like the word “thrivor,” since it’s not unique to MBC. I think moving away from “survivor” to describe people with MBC is important because of the assumption that we finish treatment and are fine. People generally don’t understand that MBC is a lifelong diagnosis with which one is never finished.
What would you like people to stop saying or doing after they find out you have MBC? Or what would like to say to people who do not know what MBC means?
I would like people to stop asking when I will be done with treatment. I’d like people to ask, “how can I help” rather than “if I can do anything, let me know.” I’d like people to genuinely mean that they want to support me.
What do you know now that you did not know when you were first diagnosed?
I did not know how much I would still be able to do. When I was first diagnosed, I was very stubborn that I did not want to adopt a “sick role.” I continued and still do work. When I was first diagnosed my top two questions were: Am I going to die and can I still work? Clearly, I haven’t died yet, and I hope to have a good quality of life for years to come. I travel, I spend time with family and friends, I’ve taken (and continue to take) care of dogs. I still do many of the things I did prior to diagnosis, but as time goes on, I seem to deal with more and more fatigue. So, it slows me down, especially with work and taking care of my apartment.