Collaborative Caregivers

a story about what I expect from health care providers

Hi again. I’m back- and it’s not six months later! I’ve been sorting through my “bubble machine brain,” (if you missed it, catch the post where I introduce this concept below)

Only Time Will [really] Tell

trying to figure out where to take you next in my journey toward an ADHD diagnosis. Like many of the stories I tell, I realized this one requires a trip into the past, many seemingly irrelevant details, and then arrival at an ✨a-ha✨ moment. This is why my family just LOVES it when I have a “quick” story to tell — there is no such thing as one in my world!

So if you’re ready to weave your way with me to my current journey of self-advocacy toward an ADHD diagnosis (spoiler alert: I don’t actually know how this trek ends!), then I’d like to tell you a bit about how I got here.

Photo by Venti Views on Unsplash Image of a winding road along a coastal mountainside.

As a young kid, I was obsessed with school. I adored my teachers and often wrote them notes on my assignments as if we were pen pals. I loved reading, writing, and learning as much as possible. However, in late elementary school and throughout middle school, I would miss a day of school every month or so because I’d spike a fever out of nowhere for 24 hours. On top of this, I was always cold, extremely overtired despite sleeping long hours, and generally pretty petite for my age.

Therefore, my mom took me to our family doctor fairly frequently. This led to a slew of tests, and after a series of blood draws, we discovered that my body temperature and composition were typical symptoms of iron deficiency anemia. Unfortunately, introducing iron supplements didn’t solve all of my problems. The fevers persisted, as did some elevated levels in my CBC blood tests, which indicated my body was acting like it was fighting some sort of infection. As my mom continued to ask my doctor questions and document when I was sick as well as what made me feel better, I continued to show up at these appointments not quite sure what was going on, but willing to figure it out.

It was during these visits, hearing my mom tell the same story of my seemingly unrelated symptoms over and over again, that I first learned that doctors are collaborators.

Yes, their expertise sets them apart, but it is through their collaborative relationships with their patients that diagnoses and caregiving truly take place.

These frequent visits with a family doctor who refused to give up on putting my mysterious puzzle pieces of symptoms together, as well as my mom’s persistence in presenting them even when they weren’t that urgent or occurring daily, were what led to a diagnosis that changed my life. After multiple referrals and visits to a variety of specialists, our family doctor eventually introduced us to a gastroenterologist. This doctor, who specialized in digestive issues, was the one who finally saw the missing link between my disparate symptoms.

I was diagnosed with Crohn’s disease at age fifteen, and suddenly the random fevers, fatigue, stomachaches, and a body that had essentially stunted its growth began to develop and thrive for the first time in years. I was able to grow back the curly hair I’d lost in clumps, eat meals from start to finish without stopping for stomach pains, and walk outside without an extra sweatshirt. Best of all, I suddenly had so much more energy! With the proper diagnosis and medication, my body was finally functioning in a way that allowed it to start absorbing the nutrients it could not hold onto until then.

I hadn’t realized how much I had lost until I started gaining it back.

As I began to live life as a high schooler whose body was functioning as it should be, I realized how small my life had become because of the symptoms I had grown used to over the years. I remember being so amazed by the taste of food, and completely pumped to be able to finally shop at all the fun stores my friends bought their clothes from.

Photo by Andrej Lišakov on Unsplash. A woman with a tee that says Back to the 90s is putting polaroids of an ice cream cone in her purse.

Sure, part of me was intimidated to find out I had a disease that I would carry with me for a lifetime, but most of me was just relieved that we had answers and a path forward. I was in awe of my health and realized I would not take it for granted. The many doctor appointments now had a purpose, and I was committed to continuing this relationship with my gastroenterologist to continue my care.

Almost thirty years after my initial Crohn’s diagnosis, I have had a few more gastroenterologists in my support system since that first pediatric GI to help me manage my flare-ups and keep me in remission. Yet, each doctor has maintained their role in my life as a collaborator in caring for my health.

Therefore, when I encounter a new symptom in my body or an issue that doesn’t seem quite right, I approach the problem through the lens of working with my providers. I assume that they may not get it right on the first try, but know they can walk with me and get closer to a solution with my self-advocacy and time.

It’s worth noting that the color of my skin often gives me the privilege of being taken seriously. However, that’s not to say other intersectional aspects of my identity don’t present their own challenges, which I’ll discuss later, but my race is not a challenge I have to contend with.

This is why, amidst the many challenges I’ve encountered along my path to an ADHD diagnosis, I have never given up on getting care for something within me that I know isn’t right. Something that I’m certain - and have heard - other women deal with similarly, who then received diagnoses.

It’s because I expect my health care providers to collaborate with me.

To see me.

To trust me.

To work together to truly provide a sense of caregiving.

The next posts I share will be about what these challenges on my diagnosis journey have looked like, who has presented them (titles only, not names… cancel culture doesn’t live here at OTWT), and what I have done to navigate each twist and turn.

Thank you so much for reading, as always, I truly appreciate your time. I look forward to sharing more about this journey with you!