HIM / HER / THEM
On Being Ill in the United States Through the Prism of Marriage | By Kimberly J. Soenen June 5, 2023
Originally from Prague in the Czech Republic (Czechia), Anna Rathkopf met Jordan, her now husband, more than 20 years ago while he was living there. In 2016, at the age of 37, Anna was diagnosed with HER2 breast cancer. At the time, their son was three years-old, and they were trying to have another child. Though doctors felt it was likely an early stage, it was aggressive enough that the physicians recommended surgery, chemotherapy, radiation, targeted therapy and estrogen blocking medication for ten years.
When injured, ill, disabled, chronic or terminally ill, the identities, constructs and roles often shift within marriage. Coupledom, parenting and the ability to relate shift overnight.
What follows is two parallel visual documentations of illness that intertwine but remain separate.
HIM
Soenen: After going through this experience, do you feel the United States has a moral obligation to provide healthcare to everybody?
Jordan: Yes, I feel strongly that the United States has a moral obligation to provide healthcare to everyone as needed.
Soenen: What should the United States government's role be in providing access to healthcare for Americans?
Jordan: I would like to see the United States move to a Single Payer National Healthcare Program.
Soenen: What has your experience with commercial health insurance been like over the years?
Jordan: When Anna was in treatment, fortunately, we did not have too many issues with health insurance hurdles. She had a great plan in the beginning and we were extremely lucky. The biggest ongoing hurdle we face now is affording a health insurance plan that covers what we need.
Soenen: How did the commercial health insurance model impact you?
Jordan: When Anna first got diagnosed, she was working for the State of New York. Her benefits, commercial health insurance included, were a significant reason why she was staying at that job. With a young child and myself as a freelancer, we realized that the benefits did put our family on safer ground.
We had a plan that covered most everything that we assumed we would need, and gave us access to any of the doctors we needed or wanted. When her treatment started, we saw how expensive her chemotherapy treatments and radiation therapy were going to be. I honestly have no idea what we would have done without that commercial health insurance.
Soenen: You had a good experience at the beginning.
Jordan: Yes. However, when Anna was going through medical treatment, her employer began pressuring her to be more “productive” in her work and reported a “drop-off of her focus.” That pressure and assessment became so unbearable that Anna resigned from that job to preserve her mental health and wellbeing.
Soenen: The United States model of commercial health insurance tethers employment to healthcare access. However, even while “insured” persons are denied healthcare. “Coverage” is sometimes provided by the employer, with some contribution from the employee. As of this writing, unionized writers from coast-to-coast are striking to push back on the “gig-worker economy” which shifts the burden of health risk to contractors and freelancers by changing their status from “employee” to “freelancer” or “contractor.” This trend of pushing people to “contractor” status impacts financial stability, and wellbeing. Should health insurance continue to be linked to employment? Although photographers and photojournalists have not unionized in the United States, the business of photojournalism has become very similar. As a freelancer, how does this impact your family?
Jordan: We had to leave Anna’s original hospital because they almost exclusively took employer-based insurance. There was one commercial health insurance company that they accepted but we had to leave that plan after our first year because the cost was too high relative to our earnings. On top of that, that plan was actually extremely limited in many ways, including what doctors we could see. Many medical professionals we wanted to go to for care were not accepting that plan.
We signed onto COBRA (The Consolidated Omnibus Budget Reconciliation Act) for three years while Anna transitioned into her full-time role working as a partner with me in our company. COBRA is a business model that allows people who lose their employment-based commercial health insurance to continue accessing healthcare selectively at a very high personal cost and it was very costly for us, especially considering how much her illness had impacted our ability to work and earn.
Soenen: Currently, Americans pay for multiple taxpayer-financed National Health Programs in addition to private insurance costs but they do not receive Universal Healthcare. What, to you, does “affordable healthcare” mean?
Jordan: I would be willing to pay more than $50.00 per month. I sometimes spend that much on a single person in my network when they share a crowdfunding campaign to help someone in their family with medical bills. It is shocking to me that Americans have to crowdfund to help families impacted by illness because we live in such a heartless and corrupt system.
Soenen: What happened after you purchased COBRA?
Jordan: Anna was receiving treatment at a highly-respected hospital known for cancer research and care and wanted to hold onto that as long as possible. Once our COBRA plan expired, we signed on to the Affordable Care Act marketplace (ACA) to buy a plan. It is still rather costly, but fortunately, we can afford it now that our company has grown. We also had to switch from her original hospital as they do not accept the plan that we are now on. So even with private insurance, we had no choice.
“Choice” in United States healthcare is a fallacy.
The ACA plan is still very costly for us relative to our freelance salaries, however. We are paying around $30,000 per year for the plan, but with Anna’s history of cancer, we are not willing to risk being without coverage like many of our friends and colleagues.
Soenen: What was the most startling aspect of managing your family budget and financial aspect of illness?
Jordan: The most surprising aspect was how unaffordable care is, and without insurance, I honestly have no idea what would have happened. Many of our colleagues and friends in the journalism industry have told us they don’t have health insurance because it is so expensive. I can understand, but I am always concerned for them because, as we experienced, even if you are young and seemingly healthy, life can change in one second.
Soenen: In the United States, the commercial health insurance industry uses Denial of Care as their business model and corporate hospital chains refuse care for patients who cannot afford hyper-inflated costs. So, having insurance does not translate into accessing healthcare. What would you like to see transform urgently?
Jordan: I want to see the United States rapidly shift to a Single Payer National Health Program. (Editor’s note: The most recent updated iteration of the Single Payer reform Medicare for All Act of 2023 was introduced in the United States Congress the week of May 15, 2023.)
Soenen: “Medically Necessary” is a term the commercial health insurance industry architected to deny care and profit from premium-paying customers. Do you have any thoughts on the vernacular that has been created by the United States healthcare system business players? For example: “The functionally uninsured,” “Pre-existing condition,” “Benefit Buy-backs,” “Pre-authorization,” “Deductibles” and other phrases that prop up Denial of Care?
Jordan: We’ve experienced this kind of nonsense ourselves. For instance, Anna has had some issues with her eye muscles. Her oncologist suggested it could be connected to her chemotherapy treatments. So, the doctor ordered tests, but our insurance tried claiming it was not “medically necessary” and tried to stick us in full with a bill for over $2,000. We then had to go back to the doctor to help us contest the denial of care. The system is gross, and using crafty words to make it seem legitimate is insulting.
Soenen: What did you learn about yourself and marriage while going through illness and creating this work?
Jordan: There have been many layers to what we have learned throughout the process. For me, at first, there was this incredible sense of appreciation for her and for our family. I always knew how much I loved her, but when she got ill and we first found out, the thought of losing her was the most fear I ever had. I think at first it brought us together. Then, when she left her former job to pursue building our company together, we felt excited about the possibilities. But then the realities of health insurance and a largely diminished income, in addition to processing the trauma we had experienced, made for some real lows. Nothing where we did not want to stay together, but we were fighting a lot and there were real problems. Then, the pandemic started and we decided to take the opportunity to go to counseling together which changed so much.
We learned how to listen to each other.
Soenen: How has illness changed you as partners, parents, photographers and people?
Jordan: I feel more vulnerable now than I did before she was diagnosed. I think often about illness coming back, or being newly diagnosed with illnesses and our mortality. In some ways, it is good. That awareness makes me extremely cognizant of who and what matters most in life. I slip up all the time and become concerned with issues related to my ego, but the experience helps me refocus. And as a parent, it has helped me tremendously. I am so much more sensitive now to my son's needs, and I have made decisions to be a more present father.
Before, I was willing to work myself into the ground in pursuit of all the ego-driven things that gross capitalism, that American culture encourages. But now, I want to ensure I have time with my family and that my son feels fully supported. As a photographer, I am driven to create work that in some ways, can help others, either by creating a feeling of empathy, or by drawing attention to issues I care most about. Anna and I need to earn a living, in large part to help pay for our high health insurance costs, so we take on lots of work that does not always meet that criterion. But before, I am not sure I understood as clearly what my mission as a photographer is.
As a person, it has forced me to address my own mental health challenges with depression and anxiety. I have a tendency to blame myself for not feeling well at times, but going through this with Anna made me more aware of my own struggles and the importance of addressing them to the best of my abilities. It has made me more empathetic with others and it has taught me it is okay to need and ask for help.
Soenen: What does a day look like for you two now?
Jordan: Sometimes it is sitting at our home office and brainstorming marketing, or reaching out to possible partners. Sometimes it is in the field creating work. But every day, we make sure to spend quality time together as a family. Either playing games, taking a walk, watching a show or reading.
Soenen: You have a book and exhibition tour coming up. There have been many books and exhibitions on illness. What makes your story, your work and your intention stand out?
Jordan: I learned so much about what Anna was feeling about her body, her femininity, and her perspective on illness through her photographs. I did not realize how lost she was feeling or how distorted she felt until I saw her images. I asked her why she was taking self portraits of herself because she had never done that previously. She said it was because she could not recognize herself anymore.
I had created almost a romanticized version of Ann Her documentation of herself for me seems much more raw. The fear I was feeling and the burden I was putting on myself to be a wall of strength that could help our family push through this incredible challenge. Meanwhile, I was privately falling apart which I did not document through self-portraits because I was so ashamed of my feelings. I felt like I was barely holding it together, trying to juggle work, keeping our three-year-old son feeling as safe as possible while all of this was going on at home. Anna caught so many moments of me I was not even aware of that I think show that stress. There are images she took of me that made me realize how much I was struggling.
This collaborative work has opened conversations that have helped us tremendously in the healing process both as individuals and partners.
HER
Soenen: Share with me where you are now, what you’ve been through and what the work means to you. Many people are tired during illness and recovery but that fatigue can permeate life long after “recovery.”
Anna: I am six years out of treatment. My doctor moved me into a "survivorship program,” meaning, I don't have to see a doctor anymore, just a nurse practitioner. I was diagnosed with triple-positive breast cancer when our son was two and a half years old. I actually found my tumor on my 37th birthday. I had a year of treatments, and it was exhausting.
Soenen: How has photography helped you manage, cope and express through this experience?
Anna: Picking up the camera and shooting was almost an instinct, a way to maintain my sanity while ill. Art is an incredible tool that can help the brain to move from what is happening (reactive) into a creative mode (active). It was easy to create. What I did not do was look at the photos once I took them. We started to look at the work after about seven months into my treatment. How did I find the energy? It was something I just felt I had to do.
Soenen: How did the fatigue and pain of illness impact you?
Anna: I was exhausted. I have never felt so drained as I felt during the treatments. It is something that is hard to imagine, but sometimes I felt like I might actually urinate on myself because the bathroom was too far to go.
Soenen: Do you think the United States has a moral obligation to provide healthcare to everyone or is healthcare a commodity that should be driven by Wall Street marketplace influences and incentives?
Anna: For me, moving to the United States, giving birth here, and going through my cancer treatment was a shock. I am from Europe, and am from a post-communist country. I was ten years old when communism fell, and I still remember it. During the first year of living in the United States, I kept noticing the commercials for hospitals, pharmaceuticals and different treatments, and I kept thinking, "Wow, this is so weird. Why do you need a commercial for a hospital or medicine? You go there when you are sick, and they treat you."
I simply had no idea what it was to live in the United States.
Soenen: How has dispelling those myths shaped your view of this country?
Anna: I firmly believe that the United States has a moral obligation to provide healthcare everyone can afford. When I was in treatment and learned that United States senators have lifelong taxpayer-financed healthcare and keep saying that citizens should not have the same access, my mind was blown. (Editor’s note: The Federal Employee Health Benefits Program provides comprehensive healthcare access to federal government employees.)
Soenen: How do you see it now?
Anna: There is so much hypocrisy in this country. Are you telling me that United States senators are unable to pay for their healthcare?
Soenen: What is the most indelible or shocking moment in memory while you were sick?
Anna: We should not have to first go to the hospital's financial department to determine if we are eligible to be treated for medical care. That happened to me, and I remember how sick it made me feel. I heard I had cancer, and they wanted to talk about money. I could not believe it.
Soenen: What should the United States government’s role be in providing access to healthcare forAmericans?
Anna: Now, this is a tricky question. I am no expert. Since the United States prides itself as a “developed country,” it should behave like all the other developed countries, meaning, having its citizens be able to access healthcare without forcing sick people into debt.
Incredibly, the United States government and select citizens criticize other countries on their policies and practices regarding healthcare, while the people living here don’t have healthcare access for various reasons. The United States model of healthcare is run as a business. Readers internationally should understand that despite the United States being one of the wealthiest countries in the world, there are no hospitals in some regions because hospital chains and commercial health insurance companies can decide as a business it is not lucrative enough to serve persons in communities that have small populations.
Soenen: How did the commercial health insurance model serve you?
Anna: I was definitively not used to having to first obtain “approval” from the insurance company before calling a doctor to set my appointments. This is insane. Or, that the insurance company assigns you a Primary Care Provider (PCP) without consulting The Patient in need, and you must spend time-fighting back to see the physician you actually need. These are just a few small examples. The insurance companies are selling you this idea that commercial health insurance gives you freedom. Instead, it chains you.
Soenen: The United States system of health insurance is tethered to employment because of dated policies dating back to World War II. Should health insurance continue to be linked to employment? How did that work for your family?
Anna: In my home country, people don't have to worry that we won't be able to work and earn money when we get sick. It was a huge eye-opener to learn that I must work throughout my treatment. Otherwise, I would be on unpaid leave and thus be responsible for my healthcare bills without any income. So, you get sick, you cannot work because you are sick, but you have to work because otherwise, you are unpaid, and you might have to pay $2000.00 monthly to your insurance company.
It is insanity.
It has not worked well for us. It makes no sense to have health insurance linked to employment. Right now, we are on the ACA marketplace health insurance, and we are paying $2400.00 a month for a family of three before actually accessing healthcare. After that, we can be billed for lab fees, Out-of-Network costs, non-formulary medication expenses and more. That is all on top of our premiums and deductibles. Seriously?
Soenen: “Medically Necessary” is a term the commercial health insurance industry architected to deny care and profit from premium-paying customers. Do you have any thoughts on the vernacular that has been created by the United States healthcare system business players? For example: “The functionally uninsured,” “Pre-existing condition,” “Benefit Buy-backs,” “Pre-authorization,” “Deductibles” and other phrases that prop up Denial of Care?
Anna: This is a joke. When I learned about this and deductibles, I could not believe something like that existed.
Soenen: How has your body changed after illness?
Anna: I went through so many emotions regarding my body. I hated my body because I felt deeply betrayed. I didn't care about the scars, but just touching my breast was making me physically ill, not because of how it looked but because that's where the cancer was. I kept looking at my breasts and remembering how I had been breastfeeding just two years earlier. I felt disassociated. I felt that I was not the same person as I used to be, but I didn't know who I was.
The biggest problem I had was my estrogen blocker pills. I was in a lot of pain for about three months. Every joint in my body hurt like hell. And then there were these incredible mood swings, heat flushes. Basically, I was put into chemically-induced menopause overnight, and that is really hard.
I am still trying to glue myself back together, and I still have days when I am not sure who I am. It's been six years since my diagnosis, and I am still learning how to love myself again and how to love my body again. Cancer, for me, was not just about the breast or my hair, it was the whole body that tried to kill me.
The whole me is still reeling from my cancer.
Soenen: How has illness changed you as partners, parents, photographers and people?
Anna: It made me realize what is essential and what is not. I try to appreciate more what I have, the love of my child and my husband, but it doesn’t mean we never argue.
Soenen: What did you learn about yourself and marriage while going through illness and creating this work?
Anna: I look back at the photos I took of myself, and I sometimes don’t recognize the person in the photos. I am very happy I took them because it gives me a sense of reality, it did happen, and it gives me a chance to glue the pieces of myself back together. I am so grateful I had Jordan in my life at that time. While looking through the photos together, we found how different our experiences were and how alone we felt even though we were together. Looking back at the photos shows me the impact my illness had on the people around me, how hard it was for Jordan not to be able to help me, and how much he was trying to help.
Soenen: What does a day look like for you two now?
Anna: Our son just turned nine. We also got a dog, a pug named Violet. I am still incredibly pained that I could not have another child. I feel guilty that my son is growing up without a sibling. My illness took that away from me. I m still working on trying to come to terms with what happened to me and to us. When I look at our photos together, I feel a dialog between us, and that is unique. Once I looked at my photos of Jordan, I realized what a toll my illness took on him.
THEM
Soenen: Is there wisdom you would like to share with couples facing illness, injury, disability or chronic illness together?
Anna: The worst part came when I got over the biggest crisis of my life and after treatment and stabilization, I had time to process what happened. That was the hardest. Going to therapy together helped immensely. Illness is what makes you truly see the person you live with. I love him now more than ever.
Jordan: Six years later, I feel our marriage has become much deeper. For other couples facing illness, injury, disability or chronic illness together, the best advice I can give is to be there for each other. Be as honest with each other as you can about what you are experiencing, and don't let shame or guilt add to an already difficult experience. Don't let shame or guilt add to an already-difficult experience. At the end of the day, so much is out of our control, but one thing we can do is offer love and support to each other to navigate the best we can.
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All photos in this article were taken by Jordan and Anna Rathkopf. All Rights Reserved.