Working with a Chronic Illness

Two years ago I received a diagnosis that changed my life. After a week in the hospital undergoing several tests to determine the root cause of a multiple health issues, my final procedure (a kidney biopsy) confirmed that I had lupus nephritis. Before the doctor's began to prepare me for that diagnosis, I didn't have much knowledge or engagement with lupus. In fact, at best all I could remember was that a former grade school classmate's mom had it. Talk about clueless.

?I quickly began to get up to speed and attempt to learn all I could to prepare myself for doctor's visits and how I would deal with it all for the rest of my life. Of all the things I've learned in the last two years, there is one truth that stands out among everything:

living with a chronic illness requires a lot of time and money.

?Time

Within the first three months, I had multiple follow ups with each of the physicians who administered to me in the hospital: cardiologist, pulmonologist, hematologist, nephrologist, and rheumatologist. They all practices at least 25 minutes from my home. Because I tried to disrupt my workday as little as possible, I scheduled as many appointments in the morning or late afternoon, however that also led me to need to account for at least 1 hour to get to/from for each appointment. And because notoriously doctors don't run on time, that means I have to give myself an extra 30 minutes to an hour depending on the trends for the individual doctor to avoid missing meetings scheduled after the appointment. It's not an exact science and sometimes I have to take calls from the car or a random coffee shop because I unexpectedly need to do an immediate follow-up with a lab test, bloodwork, shot or even engage in an extensive conversation about meds and side effects to find the best solution. And if there's a complication, I have to be prepared to have more appointments in shorter span of time so we can accurately monitor progress.

After I finish with the doc, that is usually a signal that within the next 1-3 days I will need to pick up a prescription. I can say this with confidence after having been to at least four pharmacies in my surrounding area that there is no one pharmacy that isn't busy these days. And in case you're wondering why I haven't joined the mail prescription option, it's because there are nuances with prescriptions that some you need right away, some you need to stop despite having additional refills and in my case I've found the best option for that is to call or show up in person to have the right things?filled at the right time.

Money

The first indication that having a chronic illness would cost money was when I received an estimate from my six day, five night hospital stay. Traditionally any hospital stay requires pre-approval from the insurance and usually doctor's offices are familiar with this practice and work out all that when you have a planned procedure. However, in my case, a trip to the urgent care led to me being transferred to the hospital so there was no pre-approval granted. I received a billing estimate for over $110,000. Again, this is where I leaned into what I knew to be true, that my insurance would realize that the admission was necessary and begin the negotiation process before I received my final bill. But, I immediately thought about those who didn't have that option. The thought of how someone could get saddled with a bill over 100K just to lead to a diagnosis and then the follow up costs related to additional visits and medicines is heartbreaking. I have one medication that must be filled at least once a month. According to the notation on my refills, my insurance saves me over $1000 on that medication alone. There are other monthly prescriptions that detail savings ranging between $30-100.?Add to that the co-pays, the parking fees (some of my docs practice in buildings that require paid parking), additional procedures, bloodwork, preventative purchases (in my case, sunblock, long-sleeve clothing) and gas to fuel my car and it's apparent that being sick is not something that everyone can afford.

Reflection ?

There are days when I see my fellow citizens walking to the doctor and I'm reminded how fortunate I am that despite the amount of time I've spent traveling, my journey was shorter because I own private transportation.

I remember several years ago before the Affordable Care Act was put into place I went for years without insurance as entrepreneur. I reasoned that I was young and healthy enough to do so versus the cost of paying for insurance that I wouldn't utilize.

Today I'm so thankful my symptoms did not present themselves at that time, otherwise I can easily envision myself still attempting to pay off the debt to this day (over 10 years later).

During my many trips to the pharmacy, I've seen people hear their final total and then have to choose which medicines they can afford that day. It's completely heartbreaking to unintentionally overhear these discussions and silently grieve with the person over the decision of which treatment is most important.

?Application

?I share my experience not to delve into the politics of what we need from government to provide social safety nets around the issue of health and true care, but to advise you to weigh these considerations with your colleagues and direct reports, especially if they have a disability, chronic illness or are survivors of life-changing diagnoses. There's a mental and physical toll that your body goes through during treatment and even after. There are milestones you carry in your brain that no one else is tracking. Before my diagnosis, there were days I suffered in pain silently, because I thought my work milestones couldn't be neglected. Now, I'm a little more vocal and have asked my team to help me so I can be more open about when I'm not feeling my best and take time off to give my body the rest or recovery it needs. I am grateful for the support they've offered in the last few weeks since I vocalized my request.

?If you are in the workforce and have a chronic illness, I hope you can find community and support within your organization and externally. In addition to joining the communities at work created to support individuals with disabilities and autoimmune diseases, I've joined a local Lupus support group on Facebook and it's made all the difference to have a network that I can openly discuss my challenges and wins.

To all these warriors, I stand with you. I celebrate your wins, I mourn your setbacks, I hold space for you and hold on to hope for your healing. Thank you for your strength and courage.