Friday, August 12, 2011

Invisible Illness blog post—August 12, 2011

What is an invisible illness? 

Consider this:

       
      Nearly 1 in 2 Americans (133 million) has a chronic condition.
      By 2020, about 157 million Americans will be afflicted by chronic illnesses, according to the U.S. Department of Health and Human Services.
      That number is projected to increase by more than one percent per year by 2030, resulting in an estimated chronically ill population of 171 million.
      Sixty percent are between the ages of 18 and 64
      90% of seniors have at least one chronic disease and 77% have two or more chronic diseases
      In the United States 4 in 5 health care dollars (78%) are spent on behalf of people with chronic conditions. The Growing Burden of Chronic Disease in American, Public Health Reports, May June 2004 Volume 119 Gerard Anderson, PhD
       
      Source: Chronic Care in America: A 21st Century Challenge, a study of the Robert Wood Johnson Foundation & Partnership for Solutions: Johns Hopkins University, Baltimore, MD for the Robert Wood Johnson Foundation (September 2004 Update). “Chronic Conditions: Making the Case for Ongoing Care”.


If you don’t see a cane, wheelchair, walker of some other form of assistance, then there may be an invisible illness lurking beneath that beautiful smile and cheery voice.  People with chronic illness and pain can be masters at disguising their true emotional and physical status. 

At home I feel free to grimace and groan as I cope with pain, but in public, I do my best to appear “normal.”  I want to be normal.  I want you to think I’m normal.  I also want you to think I’m coping well and accept my limitations and restrictions on activities with an air of grace. 

The truth is, I struggle with this every day. 

I suffer from the mental malady of the “used-tos.”  I used to be able to walk a long way, ride my bike as long as I’d like, take my adorable grandsons on outings.  Activities that I used to take for granted are now off limits.  Places that I used to go—like Honduras and Guatemala on mission trips—now seem to be out of my reach.  I used to hike in the woods, just me and my dog Panda, enjoying nature together.  I used to spend hours weeding in the garden and now my neurologist informs me that this is just as strenuous an activity as playing football.  This may sound like an exaggeration, but I know he is telling me, that, for me, weeding is a danger to the precarious condition of my spine. 

The truth is, I an envious of other people who are able to do these things.   

The truth is, even though I go to God and depend on him in the midst of my pain, sometimes I am mad at him.  

4 comments:

kim said...

Hi Linda,
This is my first time on your blog site. This morning I went to church but didn't last very long - about 10 minutes. Pain was strong, pain was upsetting me and I was close to tears. I knew I didn't have the emotional energy to pretend I was OK, and not wanting to break down in front of others, I escaped and came home. Ironically, the congregation were singing " How he loves me so" when I left.

I note how important it is to you to appear "normal" to others. I can relate to this. What is it about an invisible illness that drives us to do this? If I was to respond to the question "how are you" truthfully every time, I imagine most people would tire of my answer or feel helpless. It doesn't help that I look well and people keep saying that I look so well! I think there is also pride in me that doesn't want to keep saying "pain continues, no change". It must be very hard for people without chronic pain to try to fathom constant pain.

I spend a lot of time by myself at home, because coping with the physical, emotional and spiritual issues of chronic pain are tiring and by myself I can just "be". Sometimes I think that if my illness was visible in some way, it would be easier to relate to others more honestly.

Anyway, those are my thoughts for today. Thanks for sharing yours,
Kim

kim said...

Hi Linda,
This is my first time on your blog site. This morning I went to church but didn't last very long - about 10 minutes. Pain was strong, pain was upsetting me and I was close to tears. I knew I didn't have the emotional energy to pretend I was OK, and not wanting to break down in front of others, I escaped and came home. Ironically, the congregation were singing " How he loves me so" when I left.

I note how important it is to you to appear "normal" to others. I can relate to this. What is it about an invisible illness that drives us to do this? If I was to respond to the question "how are you" truthfully every time, I imagine most people would tire of my answer or feel helpless. It doesn't help that I look well and people keep saying that I look so well! I think there is also pride in me that doesn't want to keep saying "pain continues, no change". It must be very hard for people without chronic pain to try to fathom constant pain.

I spend a lot of time by myself at home, because coping with the physical, emotional and spiritual issues of chronic pain are tiring and by myself I can just "be". Sometimes I think that if my illness was visible in some way, it would be easier to relate to others more honestly.

Anyway, those are my thoughts for today. Thanks for sharing yours,
Kim

natureofgrace said...

Kim, thanks for reading my blog post. I understand how difficult it is to appear in public when experiencing pain and not wanting to cry.

I identify with your comments about being by yourself and being able to just "be." And yet, it is important for us to find safe people with whom we are able to be real, and from whom we can experience "how God loves us so."

Everything is so much harder when we're hurting and when we see no end in sight to our suffering. Being with others who know what we are experiencing "from the inside out," is very helpful. Just knowing you understand me blesses me. Thanks for being real with me, Kim.

Christmas can be extra challenging because of the unrealistic expectation we have for a perfect Christmas--more pressure we place on ourselves to appear normal and happy.

Thanks for sharing your thoughts, Kim. I really appreciate your response to my writing.

Linda

daShank said...

It was nice to read about someone who knows how I feel. Its hard. I have chronic pain that lead me to a therapist for dealing with the mental part of it. He convinced me to take narcotic pain meds. He was a well respected therapist for over 30 yrs and wrote papers on how to control your pain with them. Long story short, he was getting paid to write prescriptions for patients and ended up having to give up his license over it. Due to the meds I was unable to feel pain from other health issues like my gallbladder shoving stones in my main bile duct for yrs. It caused malnutrition and weight & muscle loss before figuring it out. Then a surgery and 3 procedures to remove the stones which I woke up on the table for twice also because of the pain meds.
The chronic pain was more than I could handle (I thought) back then, but the hell since then has been so much worse. I still don't digest right and the malnutrition caused a spiraling effect that I still cant come out of. I feel like im slowly dying and nobody understands. Ive been coming down from the high amounts of the narcotics for 2 yrs. Was on so much for so long its dangerous to take me off any slower. Im scared of all the pain again, its only thing that gives me a quality of life, but at same time is taking that life.
I know everyone gets tired of my whining, I do too, but I can't help it. Im miserable.
I finally found my way to God a couple yrs ago which has helped so much. I give Him my problems when I cant deal with them and He always gets me through them ♡ nature is my church, I go there to breath and take in some of the natural beauty He gave to us.
I appreciate reading your words. Helps to know im not alone. Sincerely;, thank you ♡ Dawn