September 12, 2008


"But you look good."

This statement often leaves me feeling irritated. And I feel badly about that. I know that folks mean well by saying it. I believe it is often a sincere attempt to encourage me or make me feel better.

However, it doesn't.

I've spent a lot of time struggling to understand why it bugs me. Often the only time folks see me is when I'm functional enough to be out and about. And fair enough, on those occasions, I don't fit most folks idea of how a sickly person looks.

But even on one of my 'good' days, I can SEE the toll that it this disease has taken on my body. I wonder why others cannot. And whether they can see it or not, I FEEL the effects of LD all the time.

When folks ask how I am and I tell them I feel like "I was just run over by a Mack truck," and their response is:

"Really?...But you look good!"

I hear, "If you look good, than you can’t possibly be as sick as you say you are." And I am left wondering whether or not they recognize my pain or are they just not willing to acknowledge it.

Awhile back I was venting to Graham about my irritation over this and my subsequent guilt over the fact that it bugs me. While it felt good to vent about it to him, it did little to alleviate my confusion over the issue. Of course, true to form, my husband who is gifted in finding humor in every situation said, "I’m going to Google it."

"Google what?" I said.

"Google, ‘but you look good.’" He said.

I guffawed and rolled my eyes as he plucked away at the keyboard.

Imagine my surprise when a whole website and organization dedicated to this very topic popped up.

Here's what we read...

Excerpt from the book,"But you LOOK good!" Written by Wayne and Sherri Connell:

"Just about every one of us has experienced being so sick we had to stay home from work or school, because we were too sick to go. We hate being sick, because the time ticks by, the work piles up and we cannot do anything about it. We gripe and moan that we “don’t have time to be sick!” even for just a day. It is just plain miserable to be sick, in pain and debilitated - nobody enjoys it. Often when we come across someone who says they have been sick and in pain for a long time, we might think they are either exaggerating or they are not doing something about it. After all, when we got sick, we got some rest, took some medication and were soon back on our feet. Moreover, when we were sick, we were pale and droopy, but they often look “perfectly normal.”

The truth is, most chronic conditions cannot be seen with the naked eye, but nevertheless are persistently keeping the person from enjoying life the way they once knew. For instance, a person can battle extreme fatigue and or cognitive impairments on the inside, even though they may appear healthy and well on the outside. Just the same, a person can have horrible pain and or dizziness, despite the fact that to the onlooker they may look strong and able.

The biggest grievance those with chronic conditions have is that their loved ones often do not believe what they are going through is real, because to others they “look good.” Sadly, this makes the person feel as if they are being called a liar or a wimp. This can cause great strains on relationships between friends, family members and spouses. Ironically, those with chronic conditions would like nothing more than to gain complete control of their lives and not have to adjust to any limitations at all! Nonetheless, their bodies do not always cooperate with their desires, no matter how much they want it to. Regrettably, a travesty occurs when the person not only has to contend with no longer being able to do what they love to do, but also has to battle for their loved one's belief, respect and understanding.

While the person with the illness/pain is mourning their loss of ability and freedom, others often accuse them of just being lazy or malingering. We must resist the temptation to make a visual diagnosis by coming to the conclusion that our loved one must be embellishing their situation or trying to pull the wool over our eyes, because to us they “look fine.” After all, when we rebut what they are telling us with, "But you LOOK good," our friend really hears, "But, I don’t believe you, because I can’t see it."

Frankly, it is impossible for us to be compassionate, until we have acknowledged there is a situation for which to be compassionate! In other words, how can we say, “I am sorry you are sick,” when we are always saying, “I do not believe you are sick, because you don’t look sick?”

People living with chronic conditions do not want to give up! They make efforts to laugh, smile, look their best and enjoy life, even though they know they will pay dearly for it. Because of this, we should not confuse their endeavors to live life and be positive, with assuming they are feeling well or doing better. Instead, let us commend them for their incredible courage, perseverance and persistence that make their illnesses and injuries seem invisible to us."

For more information:


Marsalie said...

First of all I want to say "thank you" for sharing your innermost thoughts and feelings with all of us who faithfully read your blog. You are an amazingly courageous person, even if you don't feel like you are on most days. You are an inspiration to many. I am glad that you are able to share your frustrations...I think we all need to be a little more sensitive in life. While I have never suffered pain like you have, I did go through similar frustrations after our twins were born at just 26 weeks. I was annoyed when people came up to me and congratulated me on their birth...when all I wanted was someone to say "I'm sorry they are so sick and fighting for their lives". I continue to pray for your health and think about you often.

Jessie said...

When I first started reading this, I was very surprised. And I am still surprised sometimes. Because I had no idea how awful your disease is. I have never seen you look sick or act sick, I had only heard it referred to. It's true, you look normal, your family is beautiful and well adjusted, your house is immaculate, etc. Nobody would know unless they were told or witnessed it.

I suffer from severe depression. But not very many people know that, and almost nobody sees it. I take medication and when I leave the house nobody would know. The physical evidence is the messy house, the laundry that is never folded, my ability to sleep an entire day away, Avery's questions about why I don't play with her enough, etc.

What I learned from you is: I think it is important that we don't hide or be embarrassed of ourselves, that we educate people. The more people know the more comfortable they are with it and the more they can either help us or other people in their lives.

s. said...

Thx for sharing you two!

My journey has certainly made me more aware that most of us carry some sort of pain - either emotional or physical - that is invisible to those around us. It's certainly made me take stock of not looking through people but being intentional in my interactions with those around me. Thanks for your vulnerability in sharing your personal experiences with me - relationships grow when we are able to be vulnerable.

Thandi said...

I can so understand that. I'd also feel like someone was doubting my word.

Thandi said...

I can so understand that. I'd also feel like someone was doubting my word.

Thandi said...

I can so understand that. I'd also feel like someone was doubting my word.