I have received some sweet offers to get my mind off of my health situation, but I’ve had to decline them because I’m so busy networking and negotiating for healthcare.

I’m no stranger to the topics of networking and negotiating. In fact, yesterday I facilitated a workshop on those very topics for students with respect to their career development.

Now I’m applying the transferable skills of networking and negotiating to my healthcare.

Photo from Flickr

As mentioned in my last post, I’ve been networking and informational interviewing breast cancer survivors. One survivor told me that it might not be necessary to talk to so many since everyone’s situation is unique.

I’m aware of that, but I also am aware of how those survivors likely know about resources that I don’t know.

I was right. I learned about great resources such as Lotsa Helping Hands, which allows people to coordinate meals and help for family and friends in need.

Then when I was deciding whether or not I wanted to continue to receive care from the first hospital that tested me for breast cancer, I sought the opinions of multiple survivors. Based on my research and informational interviews with them, I switched to a larger hospital with more holistic services.

Although I believe I made the right decision to switch hospitals, a bigger hospital also means more bureaucracy with services. Based on my informational interviews with survivors, I heard that there were foundations that could potentially give me small grants to fund different types of expenses since I was being treated for cancer. After several emails, voice messages, and phone calls to different departments at my new, larger hospital, I spoke to a resource specialist and her intern, who notified me of a few foundations to which I could apply.

In case you or someone you know could benefit from them, the foundations are the Ellie Fund, Joe Andruzzi Foundation, The FLY Foundation, and Cleaning for a Reason. I applied to all four of those foundations within a few days of receiving the applications for them. The first three included essay portions that asked me to explain my personal circumstances and why I could benefit from funding. It felt like applying to college all over again, but more stressful.

I also have heard of Livestrong and The Samfund, but I haven’t had time to look through their applications processes in much depth. Actually, I did briefly look at eligibility requirements for The Samfund, but I’m so new to my diagnosis that I realized I was not currently eligible. In order to qualify, I need to meet one of three criteria:

• Completed planned treatment with no evidence of disease, or
• One year following the completion of planned treatment with stable disease, or
• In remission and on long-term hormonal therapy (such as Tamoxifen for breast cancer survivors) or long-term targeted therapy (such as Gleevec or Herceptin

Because I have not overcome cancer, I am not eligible for this grant from The Samfund.

I’m sure it’s a great organization with a noble cause, but there is something upsetting about being deserving of financial support only if my cancer chooses to cooperate and be gone from my body. My worthiness of funding depends on factors I cannot control.

It reminds me of what one of my classmates from high school wrote after I revealed that I had breast cancer on social media.

Under one of my posts, she commented, “Prayers for healing, inside and out. Unnerving to think that here in Norway, you get sick, you get all support, while in the US you have to make sure you clip the right coupons. I know you will prevail!!”

The part about how you have to “clip the right coupons” resonates with me a lot.

When you’re a woman diagnosed with cancer in my age group, doctors refer you to a reproductive endocrinologist for a fertility consult. A reproductive endocrinologist told me that it sounded strange, but one of the “silver linings” of my diagnosis is that cancer gives you a discount on fertility treatment if you want it … Oh me oh my—THAT’S what it takes to get a sale on fertility expenses … Wow … Now the policies around “cancer discounts” for fertility may vary by state, but again, that makes sense if we agree that you have to “clip the right coupons” for healthcare in the US.

I got my first wave of medical bills in the past few weeks. Yeah, that has been a lot to process. A social worker at my first hospital told me I had good health insurance compared to other people. If I have “good” health insurance, I have lost whatever little faith I had in our healthcare system.

A few cancer survivors told me that health insurance companies assign case managers to situations like mine. They guide patients like me through the billing process. I called my insurance one week, and they referred me to another line, which connected me to a case manager. In my first conversation with that case manager, she explained that she was a nurse. When I asked her about billing, she explained that it was her responsibility to help me navigate the medical system. If I had questions about my bills, I had to contact the Member Services for my health insurance. I told her that I had contacted Member Services originally, and they transferred me to her department.

I thought that maybe I wasn’t clear enough the first time that I called my health insurance’s Member Services. I called them the following week. I specifically explained that I wanted to talk to a case manager to navigate billing, not the medical system. Then Member Services transferred me to the same line, which was supposed to connect me to the nurse who was my case manager for the medical system side of my healthcare. The representative on the line told me to talk to the nurse who was my case manager anyway because she could advocate for me.

A couple days ago, I described this predicament to a breast cancer survivor, whom I met through a colleague. The breast cancer survivor told me that one day a case manager called her to discuss her billing. Then there was a day she didn’t have that case manager’s number so she called the main line of her health insurance. It turned out that the main line of the health insurance company had no clue what she was talking about when she said she had a case manager through the health insurance company. The representative on the main line had no record and no way of knowing who her case manager was and how to find out who that person was. (Thankfully, she was able to find her case manager’s contact information again on her own.)

This breast cancer survivor offered to give the the line that she typically calls for her case manager since we have the same insurance company. As I type this, I think I will reach out to her again because she didn’t have the number on her at the time. Again … it’s networking for care.

I’m so busy networking that I barely have gotten to the negotiating piece. I guess I’ll see how successful I am with negotiating once I talk to the proper contact about my medical bills or once I hear back about the grant applications that I submitted. Apparently, the resource specialists at my hospital advocate and negotiate on the patients’ behalf.

How much more work would I have to do with negotiation had I stayed at my first hospital?

How do most patients do it? Many people do not have access to a large hospital with abundant resources and staff.

I’m overwhelmed enough, and I’m receiving care at a well regarded institution.

Today I realized that my employer offered a Health Advocate benefit. Organizations like this offer resources to help you navigate health insurance and healthcare. I’ve never used this type of organization before for such serious health questions, but at least my employer offers this option. If I were still working at a small nonprofit like I did in the past, I definitely wouldn’t have had this service. Heck, when I was at a small nonprofit, my employer didn’t even offer a retirement fund—and he was a multimillionaire. (His decision not to give employees a retirement fund probably demonstrates the mindset that enabled him to become a multimillionaire.)

Speaking of benefits that only certain employers have, my employer also offers an Employee Assistance Program (EAP). An example of an EAP company is AllOne Health. EAPs offer a variety of free and confidential assessments related to occupational, medical, legal, financial, and other life issues. I asked them about supports related to a variety of issues such as financial well-being. Apparently, they offer services around getting people to manage debt. Since I was trying to avoid debt, I didn’t qualify for their services. Oh, well. I tried. Much like many places’ approach to healthcare, this approach to financial health is more reactive than proactive.

Why do I share all of this? Well, in my circles, I know people who assume that those who struggle are in that position because they did something to deserve it. Unfortunately, some of the people who think like this work in the health professions. They consistently remind others of how they got to where they are in life because they worked so hard. They intend to be inspiring, but sometimes those efforts fall flat.

I believe in the value of hard work. I wouldn’t be an educator if I didn’t believe in one’s agency to self-advocate and flourish in the world. Simultaneously, I understand that a strong work ethic is not the magic pill for everything.

If you ever find that magic pill, let me know. Then I could take it and wouldn’t have to worry about my health and medical bills.

As much as I would like to take my mind off of my health situation, I really need a systemic solution to these pervasive problems—not just for me, but also for others.