If You Think You Don’t Need to Know About Hidden Disabilities, This Article is for YOU.

If You Think You Don’t Need to Know About Hidden Disabilities, This Article is for YOU.

If You Think You Don’t Need to Know About Hidden Disabilities, This Article is for YOU.

If you have read any of my previous articles, you know I can get up on a soapbox about stuff.  I am pretty darned laid back by nature, but for the handful of things nearest and dearest to my heart, I am passionate!  So consider the soapbox dragged across the floor, my feet firmly planted and here we go!

A disability is, by definition, “a physical or mental condition that limits a person’s movements, senses or activities.”  If your disability is Hidden (or Invisible), it is one that is not necessarily apparent to observers.  It is anything that hinders your ability to move normally, function emotionally or mentally “normally” or anything that hinders your quality of life–that no one can see.

Did you know that 1 in 2 Americans have a chronic medical condition of some sort?  And according to Wikipedia, 96% of Chronically Ill people show no outward signs of their disability.  If you look around you (if you are with other people), chances are high that there is someone struggling with something that makes going about their lives particularly taxing, if not impossible.

Here is where it gets mind blowing!  Issues on the list of Hidden Disabilities are SO numerous and SO varied! Here is a list of some of the Hidden Disabilities, thanks to Disabled-world.com:  ADHD,  Anxiety disorders,  Allergies,  Asthma,  Autism, Auto-Immune Disorders, Bipolar disorder, brain injury, Chronic Fatigue Syndrome, chronic pain, Depression, Diabetes, EDS, Endometriosis, Epilepsy, food allergies, Fructose Malabsorption, Inflammatory Bowel Disease, Lupus, Lyme disease, migraines, MS, Multiple Chemical Sensitivity, Personality disorders, PTSD, POTS, Rheumatoid Arthritis, Scleroderma, TMJ, Ulcerative Colitis.  And you know what?  That isn’t even the entire list!

To the person on the outside, I know all this “hidden illness” hoopla might be a hard pill to swallow.  You look around, and truly, most people look fine.  How do we know that they aren’t just lazy, whiners or attention seekers?  If things were really that bad in their lives, if they were as affected as you want me to believe, Michelle, they would be in a wheelchair.  Or catatonic in a corner somewhere.  I am just not buying it, you say.  That kid, throwing a fit in the line at Walmart, just needs a spanking.  The person who says they can’t eat or be around certain things is a drama queen!  The person who says they are too depressed to get out of bed is just lazy and feeling sorry for themselves.

Ok.  I hear you. But let me shed some light on three different points that might help you better understand the world  of “Hidden Disability.”  If you have some insight, perhaps that insight can plant compassion and understanding in your heart.

 

1. Hidden Disabilities are Different in Each Person.

So, that this means is that just because Grandma Minnie had “the arthritis,” does not mean it will affect your neighbor, Myrtle, the same way.  Maybe Myrtle’s kind of arthritis is an auto-immune kind, bringing with it exhaustion and all over joint pain and swelling.  Maybe Myrtle has other health issues IN ADDITION, which amplify the symptoms of her kind of arthritis.  You might get frustrated because your grandma had “the arthritis” and  she walked to work, both ways, for 97 years as well as pushed a plow and had 27 children!  Myrtle isn’t like that.  She has someone come and clean her house because she says she is too sore.  She cancels plans, saying that she is hurting too badly today.  And her yard isn’t pristine, like the rest of the yards around!

This is the most important point for understanding Hidden Disabilities.  You can not have expectations for how a person with a hidden disability should act, think or what they should accomplish.  There are so, so many factors that make these disabilities different from person to person:  genetics, upbringing, other medical conditions in addition, side effects of medicines, ability to afford the medical care/therapy/medicines they need, as well as support and help at home/work/school.  So remember, when you catch yourself making assumptions about how Myrtle should be feeling and what she should be doing, give her grace, remember that you don’t know all the details.  Maybe turn the energy you would spend being frustrated with her into energy you could use to help her.  Goodness knows her yard needs  it:)

 

2.   Mental illness is an Illness.

I have a friend who has a son who is a Type 1 Diabetic.  I cannot imagine anyone ever saying to him, “If you wanted to badly enough, you could go without your insulin,” or “When your blood sugar crashes, just think about happy things and go for walks and you will be fine.”  No!  His body does not make enough of a chemical it needs to function normally.  The protocol by probably every doctor on planet earth is to give him that chemical (insulin) that his body doesn’t make.

The brain is full of chemicals.   Let me give you a quick synopsis of the main 6 chemicals in the brain, called neurotransmitters. (Health Central):

*Glutamate:  Plays a role in learning and memory but too much of it can lead to agitation, impulsive behavior and even violence.

*GABA:  Is a calming neurotransmitter which inhibits too much nerve activity.

*Serotonin:  Gives peaceful, hopeful feelings.  Low levels of serotonin are associated with depression.

*Dopamine:  This chemical is a stimulating neurotransmitter.  Too little dopamine leads to depression.

*Endorphins:  This is both a hormone and a neurotransmitter.  There are 20 different kinds, some more powerful that morphine.  We release these when we are stressed or in pain.

*Noradrenaline:  Associated with our fight or flight response.  It also moderates our physical actions like heart rate and blood pressure.

There is no part of the human body that is free from the effects of a fallen world.  Every part is subject to disease, imbalance and disorder.  The brain is no exception.  I actually don’t care for the term “mental illness.”  I feel like it has such a stigma attached to it.  As soon as that term is uttered,  judgements, assumptions and misinformation fills the mind of the hearer.  I prefer the term “chemical imbalance” because that is exactly what it is.  Depression.  Anxiety.  Bipolar disorder.  Schizophrenia.  ADHD.  PTSD. OCD.  Very possibly Autism.  All caused by imbalances in the neurotransmitters in the brain (except Serotonin, which is made mainly in the gut).

These are Hidden Disabilities because of the way this person’s body, who has a chemical imbalance,  wacks out the chemicals it needs to function “normally.”  It is the same way with a diabetic who doesn’t make the chemicals it needs.  No one judges them for that.  Medicine is crucial to balance these people (with lots of tweeking of the meds along the way).  It is no more a sign of weakness or sinfulness as is my friend’s son who is a Diabetic. A friend or family member who struggles with a chemical imbalance is indeed struggling.  Most are miserable in their own heads.  Just like with any Hidden Disability, the blow of a life lived with chemical imbalance can be softened when met by folks who chose to show grace, patience, support and understanding.

 

3.  Most People with Hidden Disabilities are Consummate Actors.

We have probably all seen pictures of icebergs in maybe science class or in a National Geographic magazine.  There is usually water, littered with chunks of ice and in the middle, a huge, jagged ice mountain, which appears to be rising from that water.  It looks massive and it makes one wonder how a ship could ever collide with such a monster, sitting there, as plain as the nose on your face.  And then a completely fascinating shot shows the truth.  The big, awe-inspiring “ice mountain” is really just a small piece, a tip, if you will, of a submerged chunk of ice easily 10 times as big as that above the surface!  You thought you knew what the iceberg looked like, but you only saw the smallest part.  The biggest, most overwhelming part of the ice mountain was hiding.

Most people with Hidden Disabilities are the same.  You think you know about them, based on what they allow you to see.  This group of people should get awards for the acting they do.  Acting ok when inside they feel like there is no purpose to life.  Acting like they don’t care that they are in the lowest reading group in class because they can’t pay attention to the story long enough to sit through the whole thing.  Acting like they are just a little tired when really, every joint in their bodies is screaming and throbbing, making each movement feel like punishment.  Acting like they don’t care that they can’t go shopping with a group of friends because the flare of their Ulcerative Colitis won’t let them get out of the bathroom.

There is so much they hide, for fear of judgement, fear of losing friends and relatives or fear of being talked about behind their backs.  And maybe you feel like the person you know with a Hidden Disability is always talking about their problems or their pain.  But friends, there is so much you don’t know.  So much you don’t see.  You don’t feel the electric shock feelings of the autistic child when he is around loud noises.  You don’t know the constant panic of a peanut allergic child, knowing they cannot live in a bubble, and yet the thing that could kill them is in most lunch boxes and snacks in lunch rooms and play grounds across the country.  You don’t know the fear and the crushing embarrassment of the epileptic child, not knowing when and where they will have their next seizure.  You don’t know the toll constant, gut-wrenching pain takes on a person or how if feels to walk with legs filled with cement.

Stepping Off My Soapbox Now!

Thank you for taking the time to listen to my heart.  Maybe the next time and the time after that you encounter someone whose disability, whose struggle and pain are invisible to you, remember that you are seeing just the tip of an iceberg.   Things are real, even when you can’t see them.  Don’t allow your thoughts to turn toward criticism.  Extend to others the grace, compassion and kindness you would love to receive if YOU were the one the life-changing illness, imbalance or defect.  A gentleman named Steve Maraboli once said, “A kind gesture can reach a wound that only compassion can heal.”  My hope is that my passion for being a blessing to those secretly struggling would be contagious and that you, too, would decide “no one is useless in the world, who lightens the burdens of others.” (Charles Dickens)

You may not know this, but you are important to me.  I would love to keep in contact with you through email and newsletters.  This gives me a way to communicate more openly with you and gives you a better way, if you want to get in touch with me!  Also, I want to be able to share extra tips and tricks to navigating a medically complicated life.  I also want to be able to provide discounts for you on some products that I have really come to love and have made my life much better.  All are part of my heartbeat for creating a community of support and encouragement at Better Together!


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2 Comments
  • Dana says:

    You should add sarcoidosis to ur hidden disabilities. We suffer with chronic joint and bone pain. Any and every inch of ur body can be affected from sarcoidosis. Please look it up.

    • sarkfam4@gmail.com says:

      Hi, Dana. You are right! My husband has Sarcoidosis, so I know it well. When I was writing the article, I debated on how to list all of the jillions of auto-immune conditions and I accidently left most of them out. I changed it to contain auto-immune disorders. Thanks for the reminder. Hugs to you!

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