Even Professional Health Advocates Need Help Sometimes

Hi, I’m Rebeka, a mother of two teenagers born with congenital heart and airway disease. I’m also a board certified patient advocate who supports young people living with chronic illness. We work together to navigate the expanse of the health system, weather speed bumps and setbacks, and celebrate victories no matter how small.

I’m also a chronic illness patient who has a health advocate (or three).

Nearly 20 years ago I was diagnosed with a reproductive system disorder, but not until I had endured years of unnecessary pain, complications, and dismissals from multiple specialists. As a young adult with barely enough real-world experience to say so, I felt immense relief in having an actual diagnosis. So much relief that I nearly forgot about the years of suffering and embarrassment at being told “this is just your normal.”

What I didn’t know then would come back to haunt me decades later.

At the time of my diagnosis I was an otherwise healthy and active young person. I had a job with health insurance, exercised regularly, and had no problems making decisions about my health. I went to my primary care doctor every year for a physical and a flu shot. I saw the eye doctor and gynecologist annually, and the dentist twice a year. I informed my entire care team of the new diagnosis and treatment, with little reaction or fanfare. I was doing everything right.

Even so, the health system failed me.

My reproductive system diagnosis was made by an interventional gynecologist. My regular gynecologist followed me from there and worked with me on refining the treatment regimen. At no point did either one of them explain to me that my reproductive system diagnosis was also an endocrine system diagnosis.

When I discussed my new diagnosis with other physicians on my care team, not one of them spoke up about affects to other body systems or known complications. That included my primary care physician for whom I held in such high regard, mostly because I didn’t know then what I know now.

For 20 years I believed my condition was being properly managed. I had no idea that the disease was ravishing another body system, and any indications of such were relayed to me as “the normal course with your diagnosis.” The internet was not what it is today and access to information outside of that from my care team was very limited.

Lab results that were a little “off” were brushed aside as anticipated complications. Difficulty maintaining a healthy body size, despite working with a nutritionist and personal trainer, were attributed to my Hispanic ethnicity. My digestive issues did get me an appointment with a gastrointestinal specialist, who, after several scopes and colonoscopies, (mis)diagnosed me — first with ulcerative colitis and then with Crohn’s disease.

By age 35, I was miserable and no one could tell me why. There were so many food groups I could not touch without severe repercussions. My extra weight centered on my midsection and I struggled to keep up with two young kids. I made the decision to undergo bariatric surgery after consulting with a weight loss physician.

The surgery was successful and after a five-week recovery I was feeling fantastic. I was working out and actually seeing results. I could chase my kids all day long and not need a nap. Some foods were still an issue, but “not enough to cause concern” per my nutritionist. And at no time did any of my new care providers even so much as blink at my reproductive diagnosis. When I questioned the bariatric surgeon about potential complications because of that diagnosis, she assured me there were none.

Time went on and my original issues began to return. For a few months I actually ignored them, willing them to disappear and stay gone forever. It was actually my young children that motivated to investigate my health concerns. How could I expect them to care for their bodies if I wasn’t caring for mine?

Practice what you preach, lady.

Fast forward to late 2020. A global pandemic was raging and the U.S. health care system was floundering. Of course I chose this time to find a new primary care provider, employing every strategy that I use today with my clients, even surprising myself with the outcome.

My new PCP was a great match, both in personality and clinical experience. She immediately ordered a ton of lab work which we reviewed line by line at my second telehealth visit. Because I had provided years of previous results, she noticed trends that worried her. She steered the ship as I was evaluated by multiple specialists, listened when I complained, and always encouraged me to keep going.

Nutritionist. Exercise plan. Bariatric follow-up. Gynecology evaluations. GI screenings (they really need to invent better ways to see the full GI tract, just sayin’). It was…a lot.

It did take time, a lot of time, and the pandemic surely didn’t help. But in late 2022 I found myself sitting across the table from an endocrinologist, who made me cry tears of joy and tears of terror in under an hour.

For the very first time, I was told that my reproductive system diagnosis was also a diagnosis of the endocrine system. “What the heck is the endocrine system?!” I thought. Apparently this was a common response, as the physician said he had many patients around my age that never received the full details of their diagnosis.

That day I learned a lot while riding quite the wave of emotions. I felt relieved that I had not accidentally been doing something terribly wrong to my body all those years. I felt angry that I had suffered for so long and no provider truly helped. I felt embarrassed that I had no idea of the depth of my diagnosis. I felt like a fraud as a health advocate. I felt scared of the unknown, of the treatment before me, of the stigma of the diagnosis.

I had never felt so validated by any doctor in my life, yet I still felt so alone.

For about a week I lived in that scared, lonely place. I only told my husband, sister, and mom about the visit. I gave myself time to grieve, to be angry, even to be super angry. And then I went to work.

I processed years of misdiagnosis (undiagnosis? half diagnosis?) traumas with my mental health counselor. I worked closely with the endocrinologist and his physician assistant to fine tune my treatment. I shared my latest health updates with friends and family and asked for their support. And I reached out to several health advocate colleagues for guidance.

A local colleague gave me practical advice for managing my condition in the Southwest heat. She told me which pharmacies had the best quick fix remedies to keep in my car and my purse. She offered a listening ear and walked me through expectations going forward. Lunch together on that sunny afternoon gave me so much hope.

Far-away colleagues guided me through financial options for the costly medication I needed. They connected me with support groups with patients on a similar journey. They let me moan and groan about the woes of our health system, for which they were more than aware of.

These professionals did for me what I do for others, but was unable to do for myself.

The support and compassion of these advocates further solidified my belief that no patient should have to manage health issues alone. No patient should have to ignore the emotional and physical stress of health events, in order to manage the administrative side of being a patient. No one.

Not even a professional health advocate.