Five Lessons from a Survivor

Register to hear Natalie read her story live at our upcoming Perkatory event on April 9th at 7pm ET.

Sometimes I wish I could have said the things I was screaming in my head or cried about on the inside, fearful to say out loud. As a master-trained healthcare administrator, adult caregiver, advocate for health equity, and a patient with various conditions, I am no stranger to interacting with doctors. But on July 2, 2020, everything changed. One moment I was visiting my best friend and the next I received a call hearing the phrase no one wants to hear, “I’m sorry but the results were positive”. Just the day before, the doctor conducting the biopsy had said “Don’t worry about it, I’m sure it’s nothing”…that was the first mistake.

Lesson #1: Don’t ever say “don’t worry about it” or “it’s nothing”. If that were the case, we wouldn’t be here right now to check.

I’ve always been an outlier when it comes to medication reactions, symptoms, and recovery times. If there is a 10% likelihood of developing an adverse reaction, that’s me. The definition of patient outlier has my picture next to it; just take a look at MyChart! So when I share this prior to medication administration or express challenges with pain management during recovery, I would hope to be heard and understood. I would expect to have a discussion on possibilities and alternatives. At this moment, I don’t care that you teach, have written articles or have conducted national and international research. All I want is to be heard, get relief, and to feel like myself again (whatever “myself” is now). When your feelings and experiences are consistently discredited or diminished when you are emotionally and physically unstable, you start to second-guess yourself wondering if you are being overly sensitive.

I am so glad I had a friend come with me to an appointment, who had heard about challenges I was experiencing when expressing myself to the doctor. At this one appointment in particular, I let the doctor know that I was still in a lot of pain and seeking support. She said she would not be prescribing anymore of [narcotic name] because “it is setting me up for future problems” so I can transition to Tylenol or Advil…in other words, I am getting addicted. First, I never asked for [narcotic]; I asked for pain management support. Second, most patients do not raise pain issues that can be addressed with over-the-counter (OTC) medication. Third, the range of medications that can be prescribed between OTCs and narcotics is vast. Thankfully my friend was there to speak up on my behalf to say “Ok, we know she is an outlier, so rather than focusing on [narcotic], there must be other options we can consider like topicals or other medications to help with the pain relief.” She said what I didn’t have the energy or courage to say at the time.

Lesson #2: Oncology patients are not your average patient. In addition to their clinical condition, they are functioning (sometimes barely) on diminished emotional, physical, mental, and social levels. They may not be saying what they need to or want to. So many times, I left the office kicking myself because I did not advocate for myself even though I knew I should. Creating space for patients to ask questions, have a conversation and feel heard is so important. Discrediting the experience only leads to potentially not following care plans and unanswered concerns.

Five and a half years later, I wish my doctor had asked me about:

• Accommodations I may need upon returning to work. Sometimes I truly have no idea how I was working 40 hours a week when FMLA was over after surgery. Each time I returned to work about 3-4 months post-op and was never ready. I was functioning on auto-pilot and constant fatigue.
• Social support to navigate oncology and post-operative life. The experience as a single AYA female living alone was incredibly difficult. The mental and emotional health tolls were immense, and I am incredibly grateful to have 2 mental health therapists to support, but many times the day-to-day aspects weighed on me just as much. Queue Type A Independent Female flaw- trying to be independent to a fault and hurting yourself in the process. I promise, I am working on this but easier said than done!

Lesson #3: Everyone cheers you on to get through the next round of treatment, getting back to work, achieving remission status. The panic triggered when I was told I could schedule my next appointment in one year was surprising. I should be excited right?!? Having frequent appointments was a security blanket, so to hear one year was like I lost my blanket. Only after talking to other patients and survivors did I realize I wasn’t alone and that they were also experiencing hidden tolls of survivorship- new sense of identity and style, testing your faith, fatigue, trauma triggers you did not expect, invisible healing. This is supposed to be the happy part, where you “move on”. In addition to the gift of living, survivorship is also something I will carry with me.

Lesson #4: Similarly to pediatric care, requiring different considerations and training from adults, the same applies for AYAs. We experience a whole set of challenges that are often quite intricate. Navigating the healthcare system and insurance presents issues for the average person, without the addition of managing scheduling and attending several appointments a week while somehow still maintaining a full-time job. I was blessed to have a hybrid position, a caring manager, and caregivers to help with rides. I still bore added stress of not appearing to slack off so I always had my laptop with me. Having spaces that are conducive to school or work, in addition to lounge spaces would be valuable.

Relationship dynamics (both platonic and romantic) change and navigating this is difficult. Experiencing my care during the height of the pandemic led to further nuances. How to process what is happening to your body, how to accept this new version of self, how you present to the world and potential partners, all while figuring out reproductive impacts that come with surgeries and reconstruction.

At the end of the day, the patient’s experience is number one. When the focus is on the holistic experience as a human versus the clinical issue, the dynamics of the interaction shift. It sounds simple, but can we go back to the basics with our bedside practices? Bias is inherent, but it is how we act on it that makes a difference. The statistics about experiences and outcomes for Black women in the healthcare system are subpar and widely studied. Knowing this fact and working at an academic medical center arms me with a wealth of resources, perspective and connections. I am cognizant of my appearance (outfit, hair, accessories) as I move through various settings as I know this unfortunately can influence how I am perceived, spoken to and treated. No patient should have to bear these burdens and tools on top of the weight of their condition to ensure optimal encounters with providers and to receive appropriate treatment.

Lesson #5: In various professional roles, I’ve worked alongside clinicians in various role groups in different capacities, making me very familiar with processes, procedures and terminology. When I come to an appointment, I don’t want the extra pressure of having to put on my “work hat” to feel seen and heard. Validate the patient experience and use it to develop a trusting bi-directional relationship that can contribute to improved outcomes.