But my pain REALLY IS REAL!!

Hi Everyone!  I feel as if God is D O W N L O A D I N G so much into my head over this last year!  I now understand that my true reason for moving here to Oahu was to get away from EVERYTHING, so that I am quiet and ALONE so that I can hear His voice distinctly...I feel as if there is revelation after revelation coming and at times a "bit" overwhelming, but so good!  I am grateful, it's been an agonizing ride at times, but also, I am learning so much about me and this disease and how it's affected me over the many long years I've been sick.  I want to share something really significant with you all, and I hope and pray that there are those who are reading this, who have struggled in their own walk of physical suffering,  can benefit from my words today...

But FIRST, as always....I want to share the beauty of Oahu and also my new beautiful granddaughter, Kale'a Ui' Lani Fowler who was born August 24th!  She is such a little Peach and we love her to pieces!  

Our little Peach at 1 month!

Mama with her brand new little Kale'a!

Grandpa Michael (my hubby) enjoying his new grandbaby!

Daddy Chris (my son) and me with the new Peach..

Happy me!!

Cute Daddy!

Precious new family...

This flower was the size of my face!!  GORGEOUS!!

Eggplant that grows in abundance here on the island

The beautiful Ko'olau mountains seen from Ko'omaluhia Gardens

Little Palm... 

Me celebrating God's amazing beauty! 

I have realized, that in my journey with chronic illness, the emotional aspects of it are more difficult and painful than the actual physical symptoms, specifically in how others perceive and treat me.  My eyes are being opened as well, to the many others out there who suffer in chronic illness/pain who are dealing with this same issue.  So I want to share something with you that I found the other day on a blog written by a fellow chronic pain sufferer.  She wrote this out so perfectly and describes my agonizing life-time struggle so eloquently, so instead of me trying to put it all down in my words, I will use hers. I know anyone out there who is reading this blog who struggles with any kind of on-going illness/pain will relate.  For me...I cried and then cried some more and then couldn't stop crying as I saw myself in these words...it's a little lengthy, but bear with me and read on.  It's crucial for all of you who are connected and or caring for someone with chronic illness/pain to read also in order to help you understand what they are going through... 

The "Invisible Illness"

By Lisa Copen  

"But you look so good!"

"I can tell you must be feeling better. You look great!"

"I'm so glad you were able to come. Thank goodness you finally are getting some relief."

To a healthy person, none of these comments seem unusual or insincere. Our friends are simply trying to find the right thing to say. Of course, they really do believe that you must be feeling better or you wouldn't be out of bed. Those of us who are ill, however, understand that if we stayed in bed until we felt better, we would never leave the bedroom and we would miss out on life. So we get out of bed. We put our energy into finding something to wear that doesn't clash too badly; something that looks acceptable, despite the wrinkles. We search for the lipstick that we don't feel like putting on. We dig through the closet looking for something that resembles a shoe. And we go on. We go out.

"But You Look So Good!"

Once we are out and about, people assume that we woke up feeling wonderful, that we jumped out of bed and are without pain. Says Donoghue and Siegel, authors of Sick and Tired of Feeling Sick and Tired, "An added difficulty in adjusting to being handicapped with invisible chronic illness (ICI) is the phenomenon of appearing well." Connie, a woman who lives with multiple sclerosis, and her friends are already planning their costumes for Halloween next year. They are going to dress up in "a costume" that portrays how they feel, so finally when people see them they might understand how they feel.

Sometimes We Want to Appear Normal

Many chronic illnesses are invisible, causing feelings and frustrations that are different than what a person with a visible condition may experience. "It seems that we all want to appear normal. We all want to give the impression of strength, health and vigor," shares Camille Lewis, a graduate student at Indiana University who lives with Cushing's syndrome. "I've debated and debated about getting some walking help--a cane or whatever-and the one thing holding me back is my ego. I don't want to appear to be in pain. I want to be normal, even though I'm not."

Sometimes We Want People to Acknowledge the Pain

One would believe that pain would be socially understood and somewhat sympathized with. Although people do sympathize with pain, it is under circumstances that we believe are severely painful, such as childbirth, trauma, late stages of cancer, etc. People cannot relate with the chronically ill since the individual is not screaming, crying or grimacing. We, who live with chronic pain, often walk, talk, and function normally (as far as can be seen) so it is assumed that the pain is overstated. Migraines, for example, are often misunderstood as being just a bad headache.

For those who experience them, their whole world comes to a halt until the pain subsides. There is a constant struggle to try to have people know what we are going through, without seeming to search for sympathy and pity.

Men who live with illnesses, such as fibromyalgia, may feel self-conscious. Their illness is primarily seen as a women's disease. They appear to be sluggish and unmotivated when they can't do physical tasks. Women are being diagnosed with chronic fatigue syndrome in huge numbers and yet the illness is still called "yuppie flu" and treated with anti-depressants. The immense fatigue that one suffers from is rarely recognized or understood by their friends and family around them. A recent Dear Abby column featured a letter written by a woman who's sister had recently committed suicide following her family's denial of her chronic fatigue syndrome diagnosis. When the young lady had told her sister about her diagnosis, the sister had responded with "When you have a husband and a family then you'll know what chronic fatigue syndrome is!"

We want People to Assume it's Just as

Bad as it is, but No Worse than it Is

Living with an invisible chronic illness can mean constantly trying to redefine your condition. We can't keep up with the rest of the world, and yet the world sees no excuse for our lack of participation. Some would argue that having an invisible chronic illness could be a blessing, as one has a choice to tell others or remain an assumed normal person. The disadvantage of this is trying to convince others that the disease is legitimate and painful. Many people think "Aren't you overdoing it... or playing it up a little bit?" People's observations do not conform to their expectations as to what a sick person should look and act like. Therefore, they are quick to become intolerant and suspect that the symptoms are overstated. It is often not only the disease itself that is painful, but also the emotional effects of having the illness discounted, having one's respectability and judgement questioned, and dealing with the criticisms of others. It is extremely necessary for the person with chronic illness to feel that his disease is validated, even by people that he doesn't know. One example of this is "the handicapped parking space confrontation."

The Need to Feel Validated

There are over 40 million people who live with chronic illness in the United States, most of the illnesses invisible. Oftentimes, illnesses make it difficult for the person to walk far and so handicapped placards are issued to them. The placard holders are soon often confronted by accusatory looks, stares, notes left on their windshield and even approached and questioned about their obvious lack of wheelchair. For those who have experienced any one of these situations, it can be a humiliating and frustrating situation. None of us feel as though we should have to justify our illness to anyone, and yet we are so angered by their obvious ignorance and their belief that we are abusing the "privilege" (that we wish we weren't applicable to receive). Although they are complete strangers, we still have a desire for their understanding and validation.

What to do?

So what do we do with these frustrations and the lack of understanding that we may sometimes feel that other people have? David Biebel, author of "If God Is So Good Why Do I Hurt So Bad?" writes in his book, "Because God is now here, I am not an only child. I have a friend, closer than a brother, who understands the path I walk because He has walked it too. His heart beats with mine. His heart breaks with mine. His hands reach out, through their own pain, to touch my aching soul and let me know that someday it will all become clear-but for now to keep on walking, like He did and like others have before me" 

Wow, need I say more?  I am learning how to be more real with others and I am also learning how to reach out in my times of greatest pain and need.  I am also seeing there are times when I expect too much from others, in areas of their understanding fully what I am going through and also how much they can give to me.  I am learning to rely on my Father God and I go to Him to share when I am feeling especially bad.  I see more clearly how painful it also is for those who love me to see my suffering and I have been working on not talking about it so much.  It's not that I don't share, I am just trying to give them breaks from it all as well....especially my husband.   

I am blessed in that I have a family, husband and a few GOOD special "true blue" friends who have stood by me all these years.  They are how I know God is there.  They are my angels.

Please share here in the comments section any areas that you have struggled with and allow me the privilege of praying for you.  

With much love and blessings,

Sue