‘Invisible’ Illnesses Prove You Can't Judge a Book By Its Cover


In order to ensure the academic and personal success of the child caregivers who seek the help of the American Association of Caregiving Youth (AACY), we work in partnership with schools and have social workers conduct periodic home visits. These meetings give us a chance to understand the challenges faced by school-aged caregivers and how the community can help them.

During a recent home visit, a mom played a voice mail for one of our social workers that accused her son of being a liar about his homework. That same mom was falsely accused by school staff of using drugs herself.

What the school employees didn't know was that the mom has Multiple Sclerosis (MS), which causes her to become easily stressed and tired. When the mom spoke with the school staff, it was towards the end of the day and she was extremely fatigued, which caused her to "slur" her words. Again, this is caused by her illness—not by substance abuse! The conclusion reached by the school staff member was one made out of ignorance.

If the mom had had a meeting at the school earlier on during the day, no one would've suspected anything. Most of the time, she appears and sounds "normal."

It is distressing when examples of prevailing ignorance and judgmental behaviors on the part of educators, healthcare professionals and other community members becomes evident.

Just as bad news spreads quickly and stays in people's minds, so too do controversial labels (or mislabels, in this case) about a child and/or their family members.

In defense of the school staff and other professionals, unless someone has told them, they may have no knowledge of an underlying illness. And, unless they understand the effects of seemingly "invisible" illnesses on children and families, they do not think twice about the potential back story.

Making the ‘invisible' visible

The importance of knowing about the impact of family health circumstances was brought home by a teacher who volunteered his time with AACY during one summer.

At the beginning of the next school year, he noticed a child who wore wrinkled clothes and seemed distracted. He knew she would soon be labeled and also likely be bullied. Instead, because of his summer experiences and new understanding, he began to wonder why. He spoke with the girl, learned of her family caregiving situation and promptly referred her to us.

Recently, there was an article in a Texas newspaper about a high school student who had been "taken down" by the police at school for refusing to give up her cell phone. Why did she want to keep her phone so badly? It was to stay in touch with her mom who had medical issues!

It doesn't have to (and shouldn't) be this way. You can help raise awareness about the effects of illnesses that are outwardly "invisible." This includes ailments such as diabetes, heart disease and mental health, along with many other chronic conditions.

Encourage people to think about and understand a child or adult's back story. What we see and perceive is often much different than reality.

Be a part of the change. Make the ‘invisible' visible.

Connie Siskowski, RN, PhD has a broad background in health care and a dedication to diminishing caregiving ramifications for family caregivers of all ages. Her passion led to the establishment of a nonprofit that evolved from supporting homebound adults and caregiving families to become the American Association for Caregiving Youth.

American Assoc. for Caregiving Youth

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Three cheers for this important point well made. Please distribute it to anyone you can think of who needs to bear it in mind.

I had my own learning experience on exactly this subject some years ago, when an unattended Staffordshire bull terrier turned up at my front door trailing his leash. The dog had scratched at the door and was sitting politely waiting for an answer. The man I assumed to be his owner was sitting motionless and unresponsive on my garden wall, his head in his hands...

Long story short, the man was not a dangerous nut case - he was an epileptic going through an absence seizure. If I'd known about absence seizures, or had thought to stop and think about it, I wouldn't have bothered the police… (blush). Happy ending - owner and exemplary dog reunited five hours later :)
Every college should teach this esp in education classes.
I have an invisible illness. Very rarely use a handicapped sign, but the one time lately that I did, I was berated by a woman who had an operation two weeks prior. I didn't tell her that I have had over a dozen operations. When I was in school, I remember teachers thinking that I just wanted to get out of running laps- when I was actually having severe leg pain. Every school should be teaching this, I agree. To have to constantly justify everything that you do is very tiresome.