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What those with chronic conditions wish their friends knew

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For those with a chronic illness, navigating and sometimes declining social invitations comes with the extra stress of frustrating friends and colleagues.

An all-too familiar text message invite may look something like this:

5:30 p.m.

Come out for a little bit with us.

                Sorry, I’m going to have to sit this one out!

You always back out last minute.

                I’m not feeling very good right now.

You looked fine at work.

Sasha, who uses the pronouns “they,” “them” and “their,” just got off work. Their fatigue had been like heavy molasses covering every action throughout the day; they almost had to leave work early. Sasha recognized that any activity beyond going straight to bed at home would mean days of recovery. But trying to explain that to young professionals — who had the energy to hit happy hour multiple nights a week and still function well at work — seemed impossible. At the beginning, Sasha’s friend group seemed understanding. However, Sasha needed to cancel a few hangouts, and the group was growing tired of asking. Sasha worried they were going to stop the invitations, just like the last group of friends.

Sasha, and many others with invisible illnesses, wish that their friends and colleagues better understood and were more accommodating of their ongoing struggles, whether with pain, discomfort, fatigue or other problems.

Invisible, chronic illnesses cannot be observed simply by looking at a person.

Many people live with chronic disease, such as fibromyalgia or irritable bowel syndrome, with symptoms that severely impact day-to-day function and quality of life. Those living with these conditions often hear the comment: “But you don’t look sick.”

People with invisible illnesses need to manage their conditions in similar ways to someone with visible illness. For example, someone living with chronic lung disease might use oxygen, which is easily and obviously observed. However, people with chronic fatigue syndrome have no obvious, visible equipment for observers to see. Although, if you looked closely, you might see that they have hearty snacks on the bedside table for those days when they cannot get out of bed, or shower wipes to replace standing in the shower. Both groups still may need to reduce their activities, attend clinic appointments and take medications, but the needs of someone who is visibly dealing with a disease are more apparent.

Regardless, most people still want to be included in everyday life activities, even with modifications. Here are a few things your friends living with invisible illness wish healthy people understood:

  • They aren’t faking symptoms as an excuse. Many people share only a small window into the gamut of symptoms they are experiencing. They don’t wish to be viewed as complainers. When they bow out of activities, they are bringing your attention to something they’d likely rather hide and trusting you will be understanding.
  • Words don’t capture the reality of experiencing symptoms. While often drawing on common experiences, these analogies and comparisons are inadequate. Someone might describe “the worst flu you ever had, only it never goes away.” Another might remind you of the time you had a stomach virus that kept you close to the bathroom. But what if that happened to you often, at any time and with no warning? From the perspective of the person with chronic illness, these descriptions are imperfect; they can’t compare because acute infections are finite. An illness flare in invisible illness is simply the latest manifestation of a never-ending illness.
  • Taking care of an invisible chronic illness can seem like a part-time job. A single chronic condition typically requires around two hours a day to manage. At any given time, 38% of people with a chronic condition report they do not feel they can sustain the day-to-day treatment efforts they are already doing. The bulk of these challenges, much like the illness itself, remains invisible in their social circles, and even to health care professionals.

By taking these ideas into account when you know someone living with an invisible illness, you can be better prepared to be a supportive friend and ally.

Kasey R. Boehmer, PhD, MPH, NBC-HWC

Dr. Boehmer is an assistant professor of health services research and a board certified health and wellness coach at the Mayo Clinic in Rochester, Minnesota, where she lives with her husband and two sons. She serves as the director for the Mayo Clinic Minimally Disruptive Medicine Program and directs its annual Care that Fits Conference. Her primary research interests include patient-centered care and communication techniques to understand and support the capacity of patients with multiple chronic conditions and their caregivers. Follow her on Twitter @krboehmer or on Instagram @kaseyrebekah.

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