The Illusion of Health: Helping Others Understand Invisible Illness

Two friends sit in cafe in front of display of pumpkins and drink coffee and have conversationA 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

© Copyright 2017 GoodTherapy.org. All rights reserved. Permission to publish granted by Andrea M. Risi, LPC, therapist in Denver, Colorado

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

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  • Nancy Jean

    Nancy Jean

    July 3rd, 2017 at 2:08 PM

    I shouldn’t ever feel like I have to justify myself to other people but the reality is that people are going to judge and do so harshly. I feel it is important for them to know that hey, I’m not lazy, this is real, even though it really isn’t that much of your business.
    I am too hard of a worker to sit by though and let them think that I am just not working for the heck of it.

  • Andrea Risi

    Andrea Risi

    July 5th, 2017 at 8:03 AM

    Nancy – You are not alone in your sentiments! I hear all too often that the people I work with feel they have to justify themselves to others. I hope you have a supportive group of people who understand YOU!

  • Mark F

    Mark F

    July 4th, 2017 at 3:31 AM

    A very nice post on bringing attention towards the Chronic diseases which are a kind of invisible illness. We help people fight with such extreme conditions. After a long time I read such nice post on such issue. Thanks.

  • Andrea Risi

    Andrea Risi

    July 5th, 2017 at 8:08 AM

    Thank you Mark! I hope we can continue to end the stigma of invisible illness by educating others and involving them in treatment.

  • Nancy J.

    Nancy J.

    July 5th, 2017 at 11:22 AM

    You do have to learn to be a little more selective with who you let in.

  • Tess

    Tess

    July 6th, 2017 at 7:41 AM

    Was diagnosed with Lyme disease a few years ago and really it just made me feel same again to actually have a label for what was going on with me. Before I knew what it as causing the pain and the fatigue I felt like maybe I was just being lazy, maybe I should just get up and move through it. It is hard when you have always been a real go getter like I have been to then get sidelined by something that is invisible and can’t be seen and that not that much is really known about it.

  • Andrea Risi

    Andrea Risi

    July 6th, 2017 at 8:34 AM

    Good point, Tess! The person with the diagnosis can struggle with feelings of laziness and guilt. Hopefully informing yourself about Lyme disease has helped dissipate those feelings for you.

  • Matt

    Matt

    July 7th, 2017 at 10:52 AM

    Why not acknowledge that an illness is an illness and we are there to love and support one another through those dark times?

  • SUSAN

    SUSAN

    July 7th, 2017 at 4:50 PM

    I do not waste time nor energy explaining anything to anybody. You can tell people about diseases, limitations, disabilities all day long, work hard to educate, bring awareness, yada ,yada. Doesnt matter. You WILL be judged. Only people who NEED to be plugged is is your health care provider, your spouse, your kids, your personal religious “go to.” I am in my 60’s now. Grew up with ancestors who used to say “Invalid,” “wheelchair confined.” No, I am not ” useless” not in- valid and my wheelchair enables me independence and mobility. I am not “dis-abled (can’t do). I AM “differently-abled.” Get to know me. I am fun to be around. I am intelligent. I am funny. It really isn’t my job, at all, to explain to you (unless you are my health provider) what’s wrong, why I am exhausted, don’t sleep, can’t sleep, have pain, where my pain is, how my rare disease affects me every minute of every day? BTW, I am a health professional and a major advocate for rare diseases! Why do people feel like they must “explain” and “validate?” themselves?

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