“You don’t look sick.” If you or someone you love is battling chronic disease, it’s a sure bet you’ll encounter that sentiment, or one similar, at some point. So much of chronic disease – from lupus to fibromyalgia to diabetes – is invisible to those around you. And as devastating as the physical symptoms may be, the emotional toll can be overwhelming as well.
If you’re newly diagnosed, it’s not uncommon to go through the stages of grief as you learn to cope with your condition: from denial to anger to sadness. The stress that comes with living day-to-day with symptoms can escalate both emotional and physical effects – compounded when friends, co-workers and loved ones struggle to understand what you’re going through.
That’s what led Christine Miserandino to create the “spoon theory” in 2003, as a way to help explain her life with Lupus. Christine compared living with chronic disease to holding a limited number of spoons each day. Every activity, every choice made, eliminates a spoon.
“When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons,” Christine wrote. You can download her full explanation of the “spoon theory” here.
The emotional and physical effects of chronic disease are tied closely together. That’s why it’s important to have a strong support system in place, with strategies for coping with both sides. Some tactics that may help:
Distraction: Sometimes, just focusing on something other than your disease can help relieve stress – like reading a book or watching a movie.
Physical activity: Depending on your illness, physical activity may be extremely difficult some days. But the old adage that a “body in motion, stays in motion” is true. Physical activity is not only good for your body, it’s good for your mind as well. Yoga and tai chi, for example, are both exercises that are easy on arthritic joints.
Spend time with loved ones: It can be all too easy to shut friends and family out when they don’t understand what you’re going through. But from both an emotional and physical standpoint, one thing is certain: You can’t do it alone. Use the spoon theory to give others tangible insight into your life with chronic disease.
Find support: Connect with others going through similar experiences and find local resources to help you cope. M Power offers chronic disease self-management workshops designed to help you stay active and enjoying the things you love. Find one near you.