The Illusion of Health: Helping Others Understand Invisible Illness

A friend of mine is struggling with a sports injury. While he is rehabbing, he continues to bike, hike, and run—and, of course, post pictures of his adventures on Facebook. As I was scrolling through the comments of some of his pictures, I read remarks such as, “You look so strong!” and “You’re in great shape!” All the while, I know … and he knows … he is struggling to put one foot in front of the other without physical and emotional pain.

This made me think about the illusion of health for people with chronic, “invisible” conditions. Invisible conditions are those that are not outwardly seen. Invisible conditions often don’t have physical signs, making them difficult to identify. Symptoms may include debilitating pain, hearing and vision impairment, fatigue, cognitive dysfunction, brain injury, learning difficulties, and mental health issues. Chronic illnesses such as fibromyalgia, arthritis, digestive disorders (like irritable bowel syndrome or celiac disease), chronic fatigue, food allergies, lupus, diabetes, and even cancer fall under the “invisible” category.

To make this clearer, if a person is confined to a wheelchair because of mobility issues caused by cerebral palsy, spinal cord injury, or Parkinson’s, it is evident to the onlooker that the person has a medical condition. However, for people coping with invisible illness, external symptoms are not present and the condition may be questioned.

The people I work with in therapy who have a chronic illness often talk about the emotional pain of living with an invisible condition. “My family just doesn’t understand why sometimes I can’t participate” is a common sentiment. Because invisible illness doesn’t have outward reminders, it can be overlooked or forgotten by friends and family, making it difficult for them to understand a change of plans. Other misconceptions, such as “They think I’m just lazy or it’s all in my head,” can cause relational problems and misunderstandings.

Because of these misunderstandings, many people with invisible condition get unsolicited advice from family and friends. Statements such as “If you just exercise/eat better/be more social, then you’ll feel better” are common.

When a person struggling with an invisible condition hears statements like these time and time again, it can leave them feeling guilty, ashamed, and even angry. Sometimes they feel responsible for their condition or that they are letting down loved ones. Younger people might face even more scruples from others based on the assumption “young people are healthy.”

Because of these misunderstandings, many people with invisible condition get unsolicited advice from family and friends. Statements such as “If you just exercise/eat better/be more social, then you’ll feel better” are common. Regrettably, these kinds of statements exacerbate anxiety, depressive symptoms, and frustration for the person struggling with invisible illness.

For people not living with chronic, invisible illness, it can be difficult to understand the experience of it. If you have an invisible condition, perhaps these tips can be of use:

1. Educate others about your condition. Find brochures, research-based articles, and books that are clinically sound. Ask your medical and mental health care providers for reputable, factual material that is not too clinical or technical.
2. Invite loved ones to your medical appointments. Encourage them to ask questions of your providers. Get them involved in your physical therapy, support groups, and counseling. Seeing what you and others are going through can help make the condition more “real” for them.
3. Write 10 things you want people to know about your condition. List what you feel physically and how it affects you emotionally. You can also list ways you’d like them to support you.
4. Assert your feelings when others make statements about your health that are untrue, unfounded, or hurtful. Don’t be afraid to speak up when you hear a misconception, whether about yourself or invisible illness. Politely speak from your point of view.

Conclusion

Having any kind of chronic condition can be difficult, but unseen illnesses can be even more challenging when it comes to interacting with friends and family. Arm yourself with medical information, get your loved ones involved in your care, be open to sharing your experience, and assert yourself when necessary. Rather than embodying an illusion of health, you can share your picture of reality with those around you.

References:

1. Bernhard, T. (2011, October 25). The challenges of living with invisible pain or illness. Retrieved from http://www.kevinmd.com/blog/2011/10/challenges-living-invisible-pain-illness.html
2. Ford, A. (2015, March 9). Patients with ‘invisible illnesses’ speak out about challenges in their communities and workplaces. Scope. Retrieved from http://scopeblog.stanford.edu/2015/03/09/patients-with-invisible-illnesses-speak-out-about-challenges-in-their-communities-and-workplaces
3. Myers, W. (2015, November 11). Invisible illness: When others can’t see your pain. Everyday Health. Retrieved from http://www.everydayhealth.com/pain-management/invisible-illness-when-others-cant-see-your-pain.aspx
4. What is an invisible disability? (n.d.). Retrieved from https://invisibledisabilities.org/what-is-an-invisible-disability

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