Patient Stories: How to Treat the Person, Not Just the Disease

So imagine, here you are, a normal nine year old, just a kid like everyone else in school. Of course that is until your migraines kick in, but you don’t think anything of it. They’re just headaches, nothing crazy, those run in the family. Your mom and dad take you to your pediatrician. She does an examination, runs a few tests. Without any explanation she makes it imminent you go to the hospital- right away. On the way to the hospital you and your parents are imagining a million different scenarios. It could be anything, hopefully nothing serious. The doctor didn’t tell you anything, didn’t prepare you, and didn’t explain. You are only nine years old.

At the hospital they run more tests. You are staring at the ceiling, hoping for the best. You just want to be back in school with your friends. Two hours pass and the results are back- the doctors have a diagnosis. Type I Diabetes. What does that mean?  You’ve heard of it before, something with sugar, with not being able to eat all the pizza you want. The next steps seem hazy. Your parents say everything will be okay but look worried. What’s next?

Sounds like a crazy story, a hyperbole. No pediatrician would send you to the hospital without an explanation, that’s not how our system works. Except it’s not just a story, it’s Jen’s story. At nine years old, she really was diagnosed with diabetes. A few migraines, a visit to the pediatrician and the next thing her whole life changes. We interviewed Jen about what that was like and what it meant for her growing up.

It began with two weeks at the hospital. Constant monitoring, checkups, medical jargon that was overwhelming. Nurses explaining procedures that were to become as routine as brushing your teeth. Carb counting, food logs, and alarm clocks to signal when she had to administer medicine or check blood sugars.  The when, where, and the how.

Then life had to continue. “Transitioning back into school was difficult and included many trips to the nurses’ office. On field trips I would need an extra chaperone, or my parents would have to come. They seemed like minor things, however, there were now always extra steps that had to be taken in the planning process. It was about figuring out which routines worked and which didn’t.”

For Jen – still growing and understanding her body, regaining control of herself and her health was critical. It was equally as important as the treatments that were administered. “I started doing my own shots immediately,” says Jen. “I asked to do them myself for the comfort level. At least I had some sort of control – my parents and the nursing staff always reminded me of the importance of having control of the disease and not letting the disease control me.”

Getting diagnosed with a life changing disease changes the way you see the world. What medication to take and when? Which foods are allowed and which aren’t? Does insurance cover these treatments? When is the next doctor’s visit? All new things are happening to you, around you and affecting the people close to you. The disease takes the primary focus and we look for ways to mitigate, to manage, to maneuver and treat it. But past the disease, there is still a person there. A person who has emotional needs, who is more than their diagnosis.

In patient care we need to think about the emotional cost of long term treatment. Helping the patient to regain feelings of control is critical. However, in the article “Emotional Dimension of Chronic Disease,” Jane Turner and Brian Kelly point out that doctors are often skilled in the biomedical aspects of the disease but may lack knowledge in understanding the psychological, social, and cultural dimensions of illness and health. And according to a 2008 WHO study, the number one area of patient dissatisfaction was not feeling properly informed and involved in their treatment. This leads to feelings of powerlessness and confusion. In order to prevent this, we must start by making sure patients are informed about their situation. In Jen’s case, she was fortunate to have many classes at her local hospital that she could attend. She would attend them with her parents and slowly learn about how her life was changing.

It’s critical that those of us involved in care delivery remember that we are looking at a patient and a person, not just a disease. We need to offer them the psychological aspects of treatment not just pharmaceutical care.

Living with diabetes changed Jen’s habits. It changed the things she did, the way she ate, the way she lived. But Jen adapted, she found ways to regain control. Jen mentions that finding support groups early on with similar experiences would have made the journey easier. And although these were available if she had searched for them, she didn’t. We don’t always know just how helpful finding people with similar difficulties and questions can be. Jen says there are questions that no one would think of that isn’t living with the disease such as “when you go out, where do you carry your medicine if you’re not carrying a purse? What do you do if you forget your medicine?”  Seems like basic information, but we don’t always acknowledge these things when talking specifically about treatment. These are details that healthcare providers are not familiar with because they are not living with the disease. For Jen it was important to know someone that was going through the same things, someone she could find comfort in discussing these otherwise uncommunicated details with.

When treating chronic conditions, and helping patients across their whole journey, treatment should be more than carb counting and testing blood sugar levels. Medicine can help contain the condition, but it doesn’t necessarily help the person.  Psychologically, a patient with an illness is prepared to live with it, but can we help them to live fully, the way any person hopes to? We can and we must.

 

headshotJennifer Garavaglia is social media coordinator of 3E Public Relations, a leading public relations firm with roots in New Jersey but branches that extend all over the world. Jennifer graduated with a Bachelor of Arts in Advertising from Michigan State University. She combines her digital and print media experiences with studio art work, including photography, broadening her ability to visualize and think outside the box. Her photography work has been placed in Gold Standard publications, and results of her public relations work can be seen across many top-tier online and broadcast media outlets.

Living with diabetes for the last 17 years, Jennifer has experienced the many highs and lows of this disease, trialing different technologies and medicines available for the treatment. For the best outcomes, she works closely with a medical staff to find the best solutions to fit her individual needs.