Commentary

Creating A New Normal: A Day In The Life Of A Person With Chronic Illness

One of the most basic insights for someone living with a chronic illness is that life takes on a "new normal." This new normal is as individual to the patient as it is unique to each disease.

Rheumatoid arthritis (RA) patients, for example, typically create a world of "work-arounds" -- alternative, often very creative, ways to do the tasks that their ailing bodies will no longer perform in the customary way. Their life is defined by a new set of parameters. Routines that they once took for granted now become a daily challenge and just being able to do them at all can make for a successful day and provide a reassuring sense of normalcy.

Let's take Mary Johnson: she's 45 years old and is married with two children. She was diagnosed with RA seven years ago.

This is a day in Mary's life.

Mary wakes up at 6:30 a.m. She knows immediately whether her day will be a good one or a bad one based on the touch of the bed sheets against her skin. She gives herself an extra 45 minutes -- just to get out of bed! Then comes her morning self-care routine.

At 7:45, Mary is in the kitchen in the throes of putting some cereal out for her kids and getting juice on the table before the school bus comes. This is tricky for Mary. She needs to have her work-arounds because her hands are gnarled and her dexterity is limited. (RA has ravaged her hands.)

At 8:30, Mary gets into the car with the help of her son, who opens the car door. She has recently purchased a large key holder to make it easier for her to turn on the ignition (she used to use a pair of pliers). These daily happenings are extremely challenging for Mary, but she has created a controlled world that helps her navigate them.

At 10, after running a few errands, she is on her way to the supermarket to do some food shopping. She is very careful to organize bags that she can carry into the house. (Typically her husband goes food shopping with her on the weekend.)

At noon, Mary is finally home again. She carefully brings the groceries inside, and puts them away. This is the first time Mary has a chance to rest her aching body.

Understanding the parameters and limitations of her life is the key to living it. In spite of her painful disease, Mary is incredibly grateful to watch her son and daughter grow up. She tries to always look at things from a positive perspective even though her body is always telling her something different. At 3:30 p.m., the kids arrive home from school. That's when things get busy again. Mary doesn't like her children to feel her pain so she creates work-arounds to be the mother they always knew. But lifting, hugging, and even holding hands have to be navigated differently.

At 4:30, the kids sit down and do their homework. Mary is able to help them, which is very gratifying for her.

At 5:15, it's time to get dinner going. Mary's a great cook and takes a lot of pride in her family meals. Her kitchen could be a showroom for OXO Good Grips. Mary cooks even healthier meals now than before she was diagnosed. It's good for her RA, and her children and husband benefit, too.

At 6:15, Joe gets home. Mary and Joe are a good team, and he helps with the cleanup and getting the kids ready for bed.

At 8:30, the kids are in bed and Mary is able to read to them and have some time to catch up with Joe.

At 9:30, Mary is ready to start her bedtime preparations. The question is, will the bed sheets hurt when she lies down tonight?

With an adjusted lifestyle and the exaggerated importance of each hour, the way a person like Mary measures accomplishments changes. The tallies are no longer about how many times she plays tennis or jogs, but rather how many times she can walk across the house pain free.

Given that Mary was diagnosed with RA several years ago, she probably has already gone through a significant journey. This path has included determining potential causes for her symptoms, becoming educated about her disease, finding the right specialist, getting properly diagnosed, and finding an effective medicine that will enable a more tolerable lifestyle.

Assessment is a critical component of the ongoing management of disease, and RA is one of many medical conditions with assessment survey tools based on anatomy, intensity, and daily living. The Health Assessment Questionnaire (HAQ) and the Disease Activity Score (DAS) are two of these that have a long, validated history. How can digital innovations and media enhance the use and impact of such assessment surveys?

  • These assessment tools can be placed among the online destinations where patients like Mary are most likely to find them. Certainly on RA patient advocacy sites, but perhaps also on parenting websites
  • Apps on iPads or tablets can more readily capture patient assessments, in particular using anatomical diagrams that let patients point to their pain spots. They can also include educational videos that explain remission and recommend next steps for patients

For so many patients in pain, a diary is an essential accessory for marking their progress and flare-ups, and for measuring the efficacy and tracking the duration of any medication they take. With technology for improved data capture, diaries can be automatically analyzed to look for trends that indicate patient improvement. The frequency of certain events and sensations over specified intervals of time can have clinical significance for a patient like Mary, and technology can help give her feedback.

Indeed, across a specialist's practice, diaries and assessments could be linked together to form a knowledge base of response rates and clinical efficacy of treatments across the RA patients in that practice.

Mary is just one patient who finds ways to live with her disease. But bear in mind that there are millions of people like Mary dealing with chronic illness -- there are lots of "new normals" out there. And, thanks to the creative application of new media and technology, new normals are very much a part of the health and wellness landscape as well.

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