Friday, April 12, 2013


Today's Prompt: Hindsight. What have you learned about being a patient that has surprised you most?

I became a patient as a child. I didn't go in with a lot of expectations.

Or maybe I did.

I don't know why, exactly, but I was fascinated as a young child with the thought of having a handicap. I wanted to know what walking on crutches felt like, what it would be like to be the kid in the wheelchair. I wanted attention in some way perhaps. I know that the movie Pollyanna left some sort of profound impact on me. In the film (and novel), the eponymous character is so perfect and pure and good. She gets injured, loses the use of her legs and loses all hope, and the whole town rallies to her bedside. She emerges in the spring like a hero, held up for her courage, her selflessness. She learns to walk again and is all the more optimistic afterward.

At the age of 10, after months of telltale signs like bedwetting, fruity breath, excessive thirst, and weight loss, I experienced 3 days of flu like vomiting and lethargy before going into a coma from DKA. I remember rousing out of my comatose state to tell my mother "I'm glad it was me and not some other kid because I know I can handle this." Apparently, I lost consciousness again and my mother cried.

How brave. How strong.

What the hell was I thinking?

While I know realistically that I did not wish type 1 diabetes on myself, I clearly did not understand what it would mean to have the deck stacked against you. It isn't about being the underdog who gets to rise to the top. It isn't about people finding you noble and brave. It's about having to live with a body that is essentially a broken machine.

I thought it might be a novelty to be special. Sick. Brave. Even in the hospital, I relished the attention. Every doctor and nurse knew my name and I had so much new information and so many new items to catalog and learn to use. I had syringes and meters and vials and exchange servings and test strips and a dietitian. I had a team of physicians who were assigned to me because I had a special condition. Everyone was sunshine and roses about how livable this would be. I could still do everything I hoped to do in my life. I could still have kids. It's better than cancer! Would you like to play in the teen game room or the pediatric game room today? Score!

My surprise as a patient has been simply that no one rewards you for being long-suffering and brave in the face of chronic disease. Unlike Pollyanna, I'm not going to be whisked away to a special hospital where I can come back and all will magically be well. Instead, people grow genuinely tired of hearing you complain - or even discuss - your diabetes, your fibromyalgia, your migraines, your depression, your arthritis. People want to think it's better now. How are you? Oh, I'm fine. That's how it's supposed to go. People don't know how to process the idea that you're fine except for when you're not fine.

On some level, I feel guilt for "wishing" this on myself - not because it worked but because I was that naive. I feel condescension toward my younger self that saw a diabetes diagnosis a source of pride. A challenge. I look back and see my arrogance. My ignorance. My innocence.

I don't know at what point it tipped for me. When it became forever and serious. Probably college when I started seeing doctors who made me see how wrecked I was. When complications started to seem like a possibility rather than something that happened to those other people. It might even have been when I was told that I could get pregnant…but that it came with risks and that I had to wait.

I thought you were supposed to be like Pollyanna. I thought you were supposed to smile and say pleasant and kind things to everyone.

Pollyanna was annoying. And she was a two-dimensional straight man with little depth written in such a way as to make other characters seem more multifaceted and dynamic.

At the end of the parade, when the town clears away the streamers and confetti, the kid with the chronic condition has to go back to dealing with their disease without the promise of an uplifting ending and a magic surgery. Maybe it would have been helpful if I had understood that part.


  1. Hi Melissa. I found your post on the #HAWMC Facebook page. I can really relate to what you wrote as I was diagnosed with migraines at the age of 8. Although a very different disease than diabetes, the naivety and unrealistic expectations are very similar. I often felt overshadowed by my two older sisters' asthma and like my illness wasn't taken as seriously as theirs. Many times I used to wish that I had asthma too instead of migraines because then I would be noticed and taken care of more. Not that I wasn't but it wasn't as dire as not being able to breathe. Childhood diagnoses are hard and I get everything that you said. I appreciate and respect what you have gone through.

  2. Hi Melissa, I tagged you in my HAWMC post today! I've enjoyed following your 30-day challenge. =)

  3. I really like this post, probably because I can relate to parts of it with my own T1D diagnosis at 12. When you're young, innocent, and naive, it seems like a challenge that you can overcome, but as you say, its a chronic disease and its forever and you begin to see things differently, maybe more clearly. Thanks for sharing!