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You Don’t Look Sick: The Struggle with Invisible Illness

You Don’t Look Sick: The Struggle with Invisible Illness

You Don’t Look Sick: The Struggle with Invisible Illness

Not all illness can be seen.

A little girl named Mia got out of the car her daddy parked in the handicapped spot and walked into the store, seemingly without difficulty.  Stephanie’s body looks healthy but she does her grocery shopping from a handicapped cart.  She notices the irritated glances as passersby gaze at her perfectly formed legs. Ashley was an office manager for 6 years when the days she had to call into work grew in increasing number.  She used to have dinner with friends and she was active in her church, but now she ends up cancelling most social engagements and she feels lucky when she is able to make it to church at all.

There is so much to people that we cannot see.  We don’t see that Mia have Juvenille Rheumatoid Arthritis, an autoimmune condition that causes inflammation and pain in her joints.  She has good days and bad days, with debilitating pain that can show up in her knees, hips and ankles without notice, making the trip back to the car a seemingly eternal one.

We don’t see that although Stephanie’s body looks fine, she suffers from a disorder known as Postural Orthostatic Tachycardia Syndrome or POTS, which causes her to pass out upon standing.  The handicapped cart enables her to do her own shopping and retain a semblance of independence.

We also don’t see that Ashley has Lyme disease, giving her symptoms of arthritis, severe fatigue and chronic headaches.  It affects her cognitively as well, creating “brain fog” which makes remembering and processing even simple things a challenge.

Invisible illness is defined as chronic illness that shows no outward signs.  According to Wikipedia, 96% of those with chronic illness, show no outward signs of their illness.  The list of illnesses that can be considered “invisible” is in the thousands and can include illnesses such as allergies, autoimmune disorders, digestive disorders (like Celiac and IBD), migraines, heart conditions, Diabetes and depression.  And on and on it goes.

My Little Miss Sparkle and Shine is full of flounce and flair.  When she is out in public, for the most part, she is socially engaging and gregarious, the real life-of-the-party.  I wish, though, I had a dollar bill for every time I have heard, “I cannot believe she has anything wrong with her!  She seems so happy.”  But they don’t see the 5-7 medicines she has to take just to get out the door each day and then she has to take them again before she goes to bed.  They don’t see the throw up bucket I keep at her arm’s length at all times or all the times she cries because she wants just one day without a tummy ache.

If you were to see Hubby during the day, you might think he looks tired, but his job is stressful and he IS getting older, so you would crack it up to that.  There is so much he hides, even from me.  You might hear him cough and think it is lingering from a cold.  But the truth is he gets winded doing the simplest of tasks and he tries to save most of the physical tasks, if he can, for after everyone goes home so they don’t have to hear him cough and wheeze.  It takes all the energy he has to get through his work day, so by evening he has nothing left.  Weekends are crash time.  His body seems to know he usually doesn’t HAVE to work, so it goes on strike until Monday morning.

The pain and discomfort sufferers of Invisible illness endure is bad enough, but the doubters and the skeptics add insult to injury.  The following list is a lens I hope you will look through when viewing and interacting with others–those you know are sick and even the ones you don’t.

  1. Instead of judgement, chose to view others with grace and kindness.  You never know what invisible battles they are fighting.
  2. Instead of jumping to conclusions based on outward appearance, give people the benefit of the doubt.  Chose to believe they are doing what they need to for their health.
  3. Believe what they say when they actually share symptoms with you,  and take into consideration that someone with an invisible illness has a very different definition of fatigue that you do.
  4. Lastly, offer to help friends or relatives when you find out they are sick. And follow through. Most invisible illnesses are here for the long haul.

Kindness and understanding can be lovely medicine to our chronically ill and hurting friends and family.  It can lighten a load.  It can lift the downcast eyes.  Everyone we meet is fighting a battle of some kind, and for those with chronic, invisible illness, it is a war that doesn’t end.


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  • Christina Huffines says:

    I absolutely love this. Thank you so much for sharing this. 🙂 I hate all that you guys go through and many more go through everyday and just because we “look” ok doesn’t mean we are. I mean taking 11 medicines a day just so I can function is exhausting all in its own. Love you guys and miss you 🙂

    • sarkfam4@gmail.com says:

      Your support is precious to me, Christina. At some point, I might ask you if I can do a blog interview with you on the subject of chronic pain. I can keep you anonymous if you would like. Think about it. Hugs to you.

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