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Posted on 5. December 2012

Invisible in a World of Wellness

By Annaben Kazemi

We live in a culture that worships at the altar of wellness. We’re bombarded by ads that tell us we can be healthy all the time. It’s OK to get sick or to be in pain, but then we’re supposed to get better. Unfortunately, those with a chronic illness don’t get better. What’s worse is they don’t look any different from those around them. It’s surprising to learn how many medical problems are invisible to others. I’m sure that most television viewers who saw Venus Williams (who was diagnosed with Sjögren’s syndrome) watching her sister play in the U.S. Open thought: “But she doesn’t look sick.”

Invisible illnesses result in many common misunderstandings by those who are well:

Misunderstanding #1: “You don’t look like you are sick.”

Should a chronically ill person “spruce up” and risk people mistakenly thinking they can participate fully in whatever everyone else is doing? This is particularly a dilemma during the holidays and at family gatherings. There are two choices: 1) take great care to look their best for everyone, only to be criticized for not pitching in more with the cooking and cleanup. 2) stay in sweats, which can lead to feelings of guilt that they’re letting themselves go and not doing enough to lift their own spirits.

Healthy people tend to assume it’s all or nothing: Either they are sick, or they are not; either they are in pain or they are not. So, if they see the chronically ill person doing anything “normal,” they assume she or he is 100 percent well. I recently attended my son’s winter concert with my daughter who has a primary immune deficiency and was ill. Someone saw my daughter and assumed she’d recovered, unaware that she came from bed, used all her strength to attend the concert, and would collapse back into bed after the concert. People aren’t deliberately being insensitive. They just don’t understand.

Misunderstanding #2: “You would get well if only you would (fill in the blank).”

The expectation of perfect health is especially hard when facing pressure from family and friends to “hit the gym,” “stay in shape,” “take more vitamins” or “get a good night’s sleep.” Intense chronic pain or illness-related debilitating fatigue will not go away with strenuous exercise and vitamins, or even a night’s rest.

The amount of unsolicited advice given to people suffering with chronic illness is frustrating, even maddening. The lack of understanding from family and friends can have serious consequences creating isolation, which can be devastating.

Misunderstanding #3: “We never know if you’ll show up.”

One of the characteristics of chronic pain or illness is the unpredictability of its intensity on any given day. Patients have to try to predict ahead of time how they’ll feel so they can decide to even accept the invitation. Saying “yes” to an invitation when a patient may have to cancel at the last minute leads to apprehension and often letdown. If always played safe by saying “no,” a patient may miss out on some fulfilling activities and socializing.

The daily burden of not knowing what they can commit to can be exasperating. Before promising to attend even the simplest of activities, the plusses and minuses have to be weighed. This constant need to scrutinize activities can itself use up energy!

People who are chronically ill know the suffering that is invisible to the rest of the world. They recognize those subtle differences in demeanor and when symptoms intensify. That’s why it’s so important for patients to have a forum where they can get support and empathy to deal with the frustration and misunderstanding that accompanies having an invisible illness. This blog, as well as the IG Living Facebook page, are just two places where patients can connect with others.

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Comments (10) -

Kathy Cattle
6:14 PM on Thursday, December 06, 2012

Some of the hardest things for me to deal with is when my closest friends come up with something they just found and think it's going to change my condition and make me well.  I get tired of trying to defend my condition it seems as though they don't believe me.  

Julia
6:52 PM on Thursday, December 06, 2012

This article is so true.  As someone with Lupus since the age of 15, and two grown children with PIDD I can so relate to this.  You get tired of looking exhausted, so you throw a lot of makeup on and dress nice,then people assume there is nothing wrong with you.  It's a major catch 22. Also, the advise is endless. I know people mean well, but I wish they would refrain from giving advice unless you ask for it. I expend a lot of emotional energy worrying about not offending the people offering the advice.

renee
5:06 AM on Friday, December 07, 2012

How did you know I was just thinking about telling my husband and friends the same thing, but I didn't know how to put into  words...

Thank You So Much

Kathy
7:52 AM on Friday, December 07, 2012

How true this is.  It expresses exactly how I feel and experience my life.  The advice has toned down after twenty years of my not getting better.  I have one dear friend who knows when I am in a downward spiral even before I do.  She is a treasure beyond words.  I am so grateful for her.  The part about never being able to plan is so true---but some of my dear friends have serious health issues so I too am called to understand when I feel well and up to going someplace and they are sick.  Thank  you for this article.  I will treasure for naming my truth simply, without apology and a call to me to ever deeper acceptance of my PIDD.

Desperate
10:45 AM on Friday, December 07, 2012

I call my disease the Invisible Ghost as no one can understand, even close family that I have a chronic health disability.  Yes, I can exercise, yes, I can work for limited times, yes, I sleep a lot!  Everyone attributes it to age, Oh, it's because you are over 60!  This isn't age, I have always had colds, allergy and asthma since I walked.  I just thought so this is how you are supposed to feel.  How would I know the difference?  I can say it is a BIG RELIEF to know what is wrong with me and to have access to forums, groups and other organizations that I can connect with to make me understand and learn to live with my ghost.

Donna
11:06 AM on Friday, December 07, 2012

I have myasthenia Gravis and am exhausted most days.  It gets so old trying to explain that my tiredness will not go away with a short rest.  I will always be tired.  I still work every day and that is a testament to itself.  Some days are better than others but they are never great.

Gail
9:23 AM on Saturday, December 08, 2012

This is wonderful. I sent this to my close friends and family so they would understand a little better. Thank you!

Linda Thornrose
12:37 PM on Sunday, December 09, 2012

Great article!  Thanks for putting into words some of the challenges we have who suffer chronic illness.  Along with CVID, I also have fibromyalgia and chronic fatigue (also invisible illnesses).  I guess my biggest frustration is not being able to be 'counted' on when making plans.  I want to participate, but when I plan something, it seems I end up cancelling due to feeling lousy.  I fight frustration and discouragement no matter how I think I have evolved in accepting my limitations.  We trudge on and keep our chins up.  And are so very thankful when a 'good' day comes along!!  Thanks to all of you who share on this blog.  Merry Christmas and I pray we all have more good days!

Sue
6:50 PM on Thursday, August 01, 2013

Thank you for  this article.  I have tried so many times to explain to family and friends. I get comments like "oh you didn't sleep well" or "is it just menopause"
I agree with them as it is to exhausting to go any further with an explanation.
I believe that most people will never understand or even want to understand what it is like to live with a chronic illness.  

Sharon Brown
4:18 AM on Tuesday, February 18, 2014

Excellent article, I will share this!

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