Wednesday, May 16, 2012

Last week I posted my first ever speech. I debated whether or not to post it. It seemed a little narcissistic, but there’s something in the spoken word that is sometimes lost in the written word, and vice versa (for instance, I had no idea I gestured that much. I’d like to blame it on nerves, but it turns out I do that all the time. Same with the funny faces. Thank God I didn’t suddenly start speaking in a cheesy German accent like I’m prone to do at home).  I’d like to do it again. Maybe I’ll be more organized next time (and in better control of my limbs).

Anyway, there was a term I used in my speech that I decided would make a great Word Wednesday- Invisible Illness. Here’s what I found.

An incomplete list of invisible illnesses from Pliable in His Hands:

Allergies and Food In-tolerances, Arthritis, Asthma, Cancer, Chronic Fatigue, Fibromyalgia and Chronic Myofascial Pain, Depression /Mental Illness, Diabetes and Blood Sugar, Digestive Disorders; Example IBS, colitis, Celiac etc., Eating Disorders, Ehlers Danlos Syndrome EDS & HyperMobility Syndrome GHS, Headaches, Migraines, etc., Heart Conditions inc Dysautonomia, Infertility, Lupus, Lyme Disease, Multiple Sclerosis, Neurological Diseases, Pain Management, Rare and Orphan Illnesses, Secondary Medical Issues, Sjogren’s Syndrome, Thyroid Disorders.

Statistics from Invisible Illness Week:


Approximately 96% of people who live with an illness have an illness that is invisible. These people do no use a cane or any assistive device and may look perfectly healthy. (2002 US Census Bureau)


Though statistics do not include many categories of illness, mental illness, or conditions, we welcome anyone who may benefit from encouragement from others who have illnesses.

  • For example, 9 million people are cancer survivors with various side effects from treatment who may feel as though they have a chronic condition. (American Cancer Society)
  • Current statistics on autism indicate that more children will be diagnosed with autism this year than cancer, diabetes, Downs Syndrome and AIDS combined, approximately 1 in 150 children (\


    • Yes! About one in four adults suffer from a diagnosable mental disorder in a given year.Kessler RC, Chiu WT, Demler O, Walters EE. Prevalence, severity, and comorbidity of twelve-month DSM-IV disorders in the National Comorbidity Survey Replication (NCS-R). Archives of General Psychiatry, 2005 Jun;62(6):617-27. and more than 90 percent of people who kill themselves have a diagnosable mental disorder

Conwell Y, Brent D. Suicide and aging I: patterns of psychiatric diagnosis. International Psychogeriatrics, 1995; 7(2): 149-64.

  • Two million Americans live with schizophrenia—twice the number of those with HIV/AIDS.  Almost 50% believe that doctors take their medical problems less seriously than those of people with other illnesses. (National Alliance on Mental Health)
  • Meanwhile, the death rate from causes such as heart disease and diabetes is two to three times greater for people living with serious mental illnesses than that of the general population. (National Alliance on Mental Health)
  • Unfortunately, two-thirds of people living with serious mental illnesses do not receive treatment. (National Alliance on Mental Health)


  • The divorce rate among the chronically ill is over 75 percent. National Health Interview Survey
  • Depression is 15-20% higher for the chronically ill than for the average person – Rifkin, A. “Depression in Physically Ill Patients,” Postgraduate Medicine (9-92) 147-154.
  • Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides; Mackenzie TB, Popkin MK: “Suicide in the medical patient.”. Intl J Psych in Med 17:3-22, 1987
  • and more than 50% of these suicidal patients were under 35 years of age. Michalon M: La psychiatrie de consultation-liaison: une etude prospective en milieu hospitalier general. Can J Psychiatry (In French) 38:168-174,1993

One of the most common phrases people with Invisible Illnesses hear is “But you don’t look sick.” (Sounds an awful lot like “You present so well” doesn’t it?) That’s not to say that people with Invisible Illnesses can’t do or accomplish any of the same things as healthy people but it does mean that accommodations need to be made for them. Just like someone who uses a wheelchair requires accommodations be made to the physical space, people with invisible illnesses often require accommodations to the environment, work load etc. For instance someone with chemical sensitivities would require a scent-free environment.

The unfortunate truth is most people, even sometimes our closest friends and family members, cannot or refuse to accept the realities of Invisible Illness. These illnesses can be very debilitating even though the one who is suffering appears to be healthy (I often say “If it weren’t for my head I’m healthy as a horse”). Next time you run into someone who has said they aren’t feeling well, but they look fine, take a few minutes before you judge their health based on appearances. They may be suffering more than you can imagine.

A video from Invisible Illness Week. I think I’ve had this exact conversation with people about my health and the kids’ health. Only I have more hair and would make funnier faces.


About Holly

I hope you're able to glean something from this blog, a nugget of wisdom, a new perspective, a smile or even a laugh. I enjoy getting feedback so please comment, share your story with me too. After all, we're here to help each other.
This entry was posted in ADHD, anxiety, children's mental health, coping strategies, definition, etymology, parenting, PTSD, schizonphrenia. Bookmark the permalink.

5 Responses to Wednesday, May 16, 2012

  1. This was a terrific piece of writing, Holly! I relate to this one being alcoholic. Because I got into recovery at a younger age than many, people around me (not the other alcoholics, of course) didn’t really believe it was true that I had a “problem”. At least, that’s the way it felt to me from comments made such as, “Well, you just have to put your mind to it, if you want to stop.” I functioned well, held good jobs, excelled in college, kept a clean house, etc, etc, except that by age 25 the biggest consumer of my thoughts was the next drink-not to mention the places that the disease took me-of which it’s taken a lot of work and many, many years sober to get past the wreckage. Alcoholism is definitely an Invisible Illness. I looked okay on the outside, but I was dying on the inside. Thanks for posting this! Hugs, hugs, hugs!!!! XOXO-SWM

  2. Holly says:

    Thanks, Kasey! We live in a culture where seeing is believing and believing is seeing. In that if they don’t see they don’t believe. And if they don’t believe, well then they won’t/can’t see. I feel like as a people we’re on the cusp of a new understanding of ourselves and each other. We’ve been teetering on this brink for a few decades now, but I think it’s going to happen soon. I believe when that happens those who suffer from Invisible Illness will be taken seriously and find healing. I’m really looking forward to it! It’s something I’ve been praying for 🙂
    Lots of love and hugs to you, Miss Kasey, for you are an impressive woman who has faced her demons and said, in no uncertain terms, “You will not own one more day of my life.” So glad to know you. Love Holly

    • Holly, your kinds words have made my day! I’m glad to know you, too, and I believe the understanding is getting better, little by little. Prayer always helps. Have a wonderful day, friend!

  3. barnyarn says:

    Your speech was wonderful. You are confident yet vulnerable when speaking to a room full of people in a way that I could never be. As someone who has been on prescription happiness for the past seven years, I know all about the horror, the lonliness and the stigma of mental illness. Thank you for being a voice for everyone who suffers this way.

    • Holly says:

      Thank you so much. Your kind words have made my day. I hope that through speaking and my blog I’m able to show the lighter side of mental health and help others who suffer know they’re not alone.
      Thank you for sharing this with me. I know how hard it can be to open up about mental health issues. You are very brave to do so. Any time you need support or understanding I’m only a few keystrokes away.

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