Transitioning to Adult Care: A Note to Doctors From a Lifelong Patient

Few things tug at our heartstrings more than sick kids. Turn on any cable channel after 7 p.m. and you’re likely to see at least one fundraising commercial featuring a doe-eyed child laying in a hospital bed. 

These images stir our emotions and catalyze feelings that range from sympathy to guilt. We watch the TV screen and reminisce about how wonderful our own childhoods were and consider how sad we feel for those poor children. 

As someone who could have been featured in one of those commercials, I know what it’s like to grow up as a sick kid. The only difference being, my condition, beta thalassemia major, started in infancy, can’t enter remission, and has no end date or viable cure (beyond a perfectly matched bone marrow transplant or experimental procedure). 

Thalassemia is a rare genetic mutation that alters the way the bone marrow produces red blood cells. Instead of producing plump, donut-shaped red blood cells, it creates flat, useless cells that are unable to function as oxygen transporters. 

Since humans can’t live without red blood cells (or oxygen), thalassemia major patients remain alive by receiving red blood cell donations from healthy people.

Imagine me a cute, little, 3-year-old girl with big eyes, pigtails, and tiny feet, sitting on a giant chair with tubes leading up an IV pole, to a gruesome bag of blood. 

Now imagine being a doctor or nurse whose entire career revolves around caring for 100 similarly adorable, button-nosed, helpless patients everyday. Practitioners are only human, so of course their emotions get triggered — and from a sick kid’s perspective, that’s a really good thing.

The humanity I encountered as a child is something very few get to experience. Doctors were kind to me. Nurses laughed with me. Office administrators talked financial matters with my mom, but never let me leave without a hug or treat. Imagine being greeted with humor and respect every time you entered a hospital clinic or billing office. 

When doctors asked about my health and school life they patiently awaited my responses. When I got admitted to the hospital for a high fever, nurses would run a cold towel across my arms, neck, and back, while assuring me that I’d be well and playing in no time. 

On regular treatment days, various members of the pediatric team would intentionally stop into my infusion room to say hello, offer a gift, or pat me on the shoulder in a show of approval. I felt cared for and maybe, possibly, loved. 

Transfusion days were full of games, friends, artistic projects, gifts, favorite foods, and compliments such as, “So wonderful to see you today, Josephine!” What’s really crazy is — I think they meant it.

Hospital time was my time and I enjoyed it (at least after the traumatizing needle sticks). 

Fast forward 20-plus years and my hospital experiences feel very different. I still get hooked up to an IV while sitting on a giant lounge chair where my feet don’t reach the floor.

Only now, my doctor stops into my infusion cubicle and gives me approximately two minutes to speak about any pain or malady I might be experiencing. Words often fumble through my lips if I don’t prepare my thoughts in advance, so I always write them down ahead of time.

On most days, when the team asks how I’m feeling, I respond by saying “Everything’s fine.” After all, why should I bother sharing more when their canned response typically sounds like, “But, you look great!” or “That’s not what the research shows.”

Fortunately I do have wonderful infusion nurses who care about how I feel. They, along with the lab technicians, buffer my overall hospital experience. 

I still can’t help but consider how different things were for me as a kid. My doctors would always believe me when I said I didn’t feel well. They’d investigate every symptom I presented, no matter how cute I looked. 

These days, I try to pretend everything’s fine since I know anything I say will get dismissed anyway. It’s such a horrible, hopeless feeling. If I was buying clothes, I’d certainly get treated better. Right now, I consider myself a dream client who’s desperate for quality customer service, but has no where else to shop. 

Most of the adults in my clinic feel this same way. We even have a running joke that if we ever come down with a serious illness, we’ll likely get brushed off and end up dead at the expense of our hospital’s mortality rate.

As a sick kid who has successfully become a sick adult and reached the fourth decade of her life, I get the impression that my medical team sees their job as done. The contrast in experience between pediatric to adult care has been very hard to come to terms with. I sometimes question myself and wonder if my fond hospital memories are the result of some sort of twisted nostalgia. 

That or maybe present-day doctors’ practices are nothing more than a symptom of society’s ever-increasing pace, spike in malpractice lawsuits, and health insurance policy interference. 

I don’t think society is to blame in every situation, though. I mean, how many adults enter a doctor’s care only to be told that their symptoms are imaginary? How many more are told “You know, you’re at that age when…” 

For this reason, I call B.S. I think as we grow older we become too disconnected from each other’s humanity and disassociated from the truth of ourselves. There’s something wrong with us when we believe an article that says doctors shouldn’t physically touch their adult patients. There’s also bad thinking behind the idea that a person shouldn’t trust the way they feel in their own body. Symptoms are usually a precursor to some bigger problem, so we should absolutely trust how we feel.

If I could change one thing about adult practitioners, it would be their bedside manner. 

In other words, doctors, NP’s, etc. should listen to and support patients as they speak about their experiences and feelings (without diminishing or dismissing them), stop insisting that a person’s health is based purely on their appearance, encourage patients to meet other practitioners for a second or alternative opinion, and perhaps, most important of all, incorporate more self-care into their own lives so they can be present (in body/mind) with patients and not feel scattered and/or judgmental. 

And, while we’re at it, give your patients a pat on the shoulder, handshake, or high-five once in a while. Adult patients need connection and comfort just as much as children do.