Humans in Healthcare: Chapter #11

Since I was a baby, I have had minor health issues. From being allergic to all milk and formulas to frequent ear infections to daily headaches and stomach aches. It didn’t significantly affect my daily life until I was in middle school. As my daily symptoms got worse, the only thing that seemed to help was eliminating foods from my diet - so that’s exactly what I did. At first, it was just a few foods. Over the years it became whole food groups. By the beginning of high school, it was easier to list what I could eat than what I couldn’t. Since September 2022, I could only eat 9 foods.

I think my situation is quite unique. From the age of 14, I took charge of my health. My parents didn’t come to my doctor's appointments, I told them which doctors I wanted to see, and I scheduled everything.

You might be saying to yourself - well they aren’t very good parents are they? 🙄 No, actually they are the best parents! They let me be in charge, they listened to me and allowed me to listen to myself (and I’m incredibly grateful for the resources they provided for me to do whatever I felt was necessary).

Yes, sometimes it was overwhelming to manage it all as a teenager, but everything good has its challenges.

I have always been empowered by knowledge. I am a problem solver, and when it comes to my health it is no different. Although I have had symptoms of MCAS since I was born, they did not significantly worsen until I was 12 years old, and I did not get a diagnosis until I was 18. I was the type of child who wanted my doctor to explain the molecular workings of a medication before I took it, regardless of how much I truly understood. I have always been extremely observant and able to identify even the smallest patterns.

That is how my diagnosis journey started: I saw a pattern. My intuition told me that the seemingly random health issues I had experienced throughout my life were connected. When I shared this with my doctor, she dismissed it, saying, "Don't kid yourself, Jenna. You'll never find an answer that explains everything."

Well, I did. If I would have listened to her (I almost gave up when she said that), I would not have been diagnosed less than a year later.

For the most part, I found that my knowledge, self-awareness, and advocacy were generally well-received by my doctors. Something that contributed to the positive reception was that I approached it from a standpoint of self-awareness, using external research to support my arguments.

There were times when I intentionally downplayed my knowledge in an effort to not seem “too intelligent” or seem like I was challenging their expertise. When I did bring up topics that they were not familiar with, some doctors responded by dismissing my concerns. Sometimes, I worried that coming in with a lot of knowledge would pin me as a hypochondriac (to be fair I did talk a lot, have anxiety, and go to a lot of doctors). Then (as the anxious person I am), I would start worrying that I really was a hypochondriac and would start questioning if it was all in my head.

I have always believed in saying everything, even if it seems irrelevant to me. Who knows, maybe it’ll spark an idea from someone else. During a visit with a doctor, I mentioned an episode of hives I had experienced during one of my morning walks and how my pediatrician said that was a process in the body called mastocytosis: mast cells releasing histamine.

As soon as I said that, his eyes lit up. He told me he wanted to order a few extra tests to test for something called Mast Cell Activation Syndrome. When the tests came back, they indicated signs of MCAS. Here is what he did next that all led to my life changing diagnosis and how I would encourage medical providers to work with patients:

- He asked me to do some research and tell him if I thought I had MCAS.
- He acknowledged his lack of knowledge on MCAS.
- Not leaving me hanging by providing resources and suggestions of next steps.
- Letting me know he was there to support me.

That was the beginning of my diagnosis.

⏸️ EMPATHY CHECK:

How can we create a better thought partnership between patients and their clinicians, acknowledging that each patient has different barriers and levels in education, comprehension, and access?

Getting a diagnosis for a complex condition is all about teamwork: primary care physician, specialists, research, trust, family, friends, tracking symptoms, being self aware, and more.

The biggest shift occurred when I stopped expecting and believing that my role was finished once I reported my symptoms to the doctor. Society had ingrained in me the belief that doctors solve health problems—I tell them the problem, and they fix it. I believe the patient is the leader, not the doctor. I also realized it is not a matter of being broken and needing to be fixed (another belief I had).

Health is a journey, not a destination.

⏸️ EMPATHY CHECK:

In today’s siloed medical system, how do we better work as one care team of primary care and specialists with the patient at the center?

The topic of health on social media is toxic on both ends of the spectrum. In the chronic illness space, it has turned into a competition of who is "sicker." Videos that gain viral attention often show people with feeding tubes or in the hospital, creating a misconception that having a chronic illness means being constantly hospitalized or reliant on surgical devices. In reality, the majority of individuals with chronic conditions lead seemingly normal lives.

On the other end, there is the picture-perfect, health and wellness aesthetic content. While it serves as lifestyle inspiration for many people, it also contributes to misinformation and information gaps. People are missing the complete picture of what being healthy means.

Social media can allow people to connect and share their health journeys and support each other which is especially valuable to those who have struggled with finding answers in traditional ways. This is all part of the reason I decided to start sharing my journey with my health challenges on social media. Since I started, I have been messaged by many people who thought they would never find someone else with similar challenges to them.

Social media has the potential to become a more positive and beneficial outlet for health information. While there's nothing wrong with seeking ways to stay healthy by utilizing wellness tips available online, it becomes problematic when these tips replace proper medical care. We can leverage social media and online platforms to provide trustworthy information, engage with patients, provide resources for products and services using the channels they are already engaged with.

Even though it may seem like I live a typical life, there are extra steps I have to take to go about my day like everyone else. Since middle school, things like seeing multiple doctors a week, getting 10 tubes of blood drawn, and getting calls from my doctors in the middle of the day have been normal parts of my life. When I leave the house, my assumption is that I won’t find food I can eat.

I am building a career for myself that serves my health. When it comes to school and work, I know my limitations are different from my peers. My priority is my health. I am selective with what clubs and extracurricular activities I participated in, and I protect my boundaries.

I have always been interested in human health, but I knew I didn’t want to be a clinician. After 10th grade, I got the opportunity to intern at a hospital’s med tech accelerator. After 3 hours of working there, I knew I had found what my career would be: health innovation. My passion for health care innovation goes beyond solving problems in the form of a business idea; it is also about empowerment and education around what living a healthy life means to me and how my challenges have shaped my life.

My experience as a patient, a young adult invested in my health, working with health systems and health tech companies has given me a wide perspective on the many stakeholders in healthcare.

As an entrepreneur with experience in the healthcare industry, I've gained a unique perspective on the system's inner workings. When I started sharing my health journey online, I noticed that some people prefer to stay away from the healthcare system. We’ve all had negative experiences, but I feel that people hold a lot of weight in the negativity and struggle. I have always been a positive person. My perspective on my health and healthcare is no different; I choose for the positives to outweigh the negatives.

For me, being an insider means I understand how things work behind the scenes. My experience working in the health industry impacts how I experience healthcare as a patient, and it also affects how providers interact with me.

DOSE OF HUMANITY 💜

I used to wait for the day when I would “feel better”. I would have a symptom free day and think: now I’m better. The next day when I would have symptoms again, I would be upset about not taking advantage of the previous day. It became a toxic cycle of waiting and obsessing over the past or future.

I learned to be more present with the way I felt. Humans like control; they like predictability. Having a chronic condition is often the opposite of both. Instead of trying to manipulate my mind into not wanting control, I found other ways to give it to myself. Having so many medication and treatment options is amazing, and I wanted to try them all immediately to discover what worked. However, trying treatments is a lengthy process.

If you solely focus on the end goal, you miss out on enjoying life in the present. I started implementing small habits like walking, meditating, and having a regular sleep schedule and my life changed drastically. Even when my health issues were at their lowest I felt the best about my life because I felt in control of my health. I felt confidence every day that I was doing everything I could for myself and my health.