Stephanie Aleite, who has lived with rheumatoid arthritis for 26 years, knows all too well about the need for rest when you’re living with a chronic illness. “Rest is a basic human need; my limit is just a little bit different than others but that’s okay. My need to rest more doesn’t change my value.”
As a behavioral health fellow and clinical social work student intern, she also has a unique understanding of the emotional strain that can occur when having to pick and choose between activities. “Beyond activities of daily living (ADLs), engagement in social activities often declines as patients struggle with energy expenditure and chronic pain,” she writes in her poster, presented at ACR Convergence 2022, the annual meeting of the American College of Rheumatology.
To better understand this common patient struggle, Stephanie created a cost-benefit analysis with what she refers to as Event Importance Variables, each rated 0-20 points:
- Guest list
- Rarity of event
- Fun factor
- Value to career
She used the principles of “The Spoon Theory,” which was a metaphorical story created in 2003 by lupus patient Christine Miserandino to explain what it’s like for someone with a chronic illness to expend energy. A “spoon” represents one unit of energy that individuals can use to complete daily tasks and activities.
Stephanie considers how much energy (I.e., spoons) is needed to attend the event by breaking down each variable and then subtracting that from the event importance total to find the event value. “I consider everything required to do something, including all the steps,” she explains. “The number of spoons I might exert is different than the number of spoons someone might have.”
The Price of Going Out
In her poster, Stephanie also analyzes the many layered steps involved in going out to a social function, including:
- Showering
- Putting on makeup
- Blow-drying hair
- Getting dressed
- Getting in a car/bus
- Driving yourself to an event
- Socializing with others
- Standing or sitting for prolonged periods of time
- Dancing
She acknowledging that they can add up quickly, draining people with chronic illness of energy and culminating in a regretful evening. The price of going out is also felt the next day, explains Stephanie, who say she feels joylessness and has negative feelings about her diagnosis when she depletes her spoons.
What Stephanie Learned – And What You Can Learn Too
This intervention allowed Stephanie to make better choices, so she’s no longer left in pain with only two spoons and feelings of regret. “You get into this guilt trap where if I don’t go out with friends, they might not ask again,” Stephanie shares candidly. “It was critical to create something quantitative. The premise was how to prioritize activities to conserve energy and to help people to feel more empowered to make decisions.”
Here, we talk with Stephanie about her experience submitting a patient poster for ACR and what she hopes others will take way from her learnings:
CJ: What was your motivation for submitting a patient perspectives poster?
Stephanie: “It’s important for patients to know the emotional bang for your buck, to know before you go into it, so you can make better choices at the social activity.”
CJ: What are you most looking forward to at ACR22?
Stephanie: “I started patient advocacy in about 2013, it’s been 10 years of wanting to go in-person to ACR. Bringing patients to the conference shows the doctors and researchers attending that there is a human aspect. It shows physicians that we are experts too, we are everyday people just like you. It shows that RA is just a part of us, that it can take up a lot of space and just a portion of who we are. Too many times I’ve been told [by doctors] I’m so articulate. We need to shift health care into a more welcoming space for patient perspectives where they are honored and taken seriously.”
CJ: What do you hope people will learn from your session?
Stephanie: “Mental health is as important as physical health. I’d like to see physicians or health care providers asking more questions about how patients engage in the world around them, for physicians to ask more questions.”
- Are you going to social events because we feel guilty or obligated?
- Are you feeling defeated afterwards or because you can’t go?
- Are you feeling defeated after you get home from work?
- Are you self-isolating? Why? Is it because you feel worthless?
CJ: Why is it important for patients like you to share their own research at ACR?
Stephanie: “It’s important because it elevates the patient voice, gives credibility to the patient voice. It sends a message to the governing body of ACR — systemwide to providers — to take part in shared decision-making in a way that honors autonomy.
Two out of three RA patients are not following the clinical guidelines set forth by ACR (Treat-to-Target). Something needs to change drastically. Why is it we have the science to combat this progressive, disabling disease but two-thirds of patients aren’t following the guidelines? On a lower level, we aren’t honoring patient perspectives. Fees for patients are higher than for a physician attending, we are still facing discrimination. Shared decision making is not truly happening. There’s hope, there’s potential.”
CJ: What did you learn about yourself and your health journey by working on your poster?
Stephanie: “I learned I should be doing it more often. I got into the habit and now it’s become a habit to make choices. I have a gigantic family and they’re always inviting me to events. Every now and then I slip up and think I can do more than I can, then I’m paying for it later. I learned I’ve finally gotten to the point of acceptance. If I overexert myself and I get into that downward spiral and my body is forcing me to rest, I don’t attach negative feelings to myself anymore.”
Fighting Societal Pressure to Keep Up
“Society is always telling us to go, go, go,” explains Stephanie. “The busier you are, the better you are, but I can now respect myself for knowing when I need rest and asking for help so I can rest. I don’t feel guilt over the need to rest. Rest is a basic human need; my limit is just a little bit different than others but that’s ok. My need to rest more doesn’t change my value.”
Stephanie’s intervention propelled her to reach a place of true confidence and self-worth. Now she’s able to share that with other people. “Sprinkle self-love among other people,” Stephanie encourages the patient community. “Now that I can take care of myself, I respect others for knowing they need rest.”
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Aleite S. Engaging with the Spoon Theory: How I Make Decisions Using a Cost-Benefit Analysis That Works to Improve My Mental Health While Living with RA. Arthritis & Rheumatology. November 2022. https://acrabstracts.org/abstract/engaging-with-the-spoon-theory-how-i-make-decisions-using-a-cost-benefit-analysis-that-works-to-improve-my-mental-health-while-living-with-ra.
