National Invisible Chronic Illness Awareness Week

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One woman shares her story

"I cannot tell you how many times I have heard the phrase 'But you Look So Good!!' or 'you look good, so you must not be in pain" or even the cruel "well, you look good so you must like pain" -- this last comment coming after someone had asked me how I felt and I was having a bad pain day so I responded with something like, "I am having a lot of pain today" or "I ache all over" or something like that.

Can you imagine hearing the phrase "well, you must like pain because you happen to look So Good." The person who said that to me did not realize how much the phrase had cut through my heart. It hurt very much. The people around me prefer to ignore my chronic pain problem or pretend like it is not even there even though I have undergone multiple surgeries for my pain problem. I wonder sometimes if they even care about me at all. I know they do, but chronic pain is so much a part of w ho I am now and so much a part of my life, how can they just ignore that part of treat it as if it is nothing. It has destroyed my life really.

I had to quit my very good job with my very good salary and therefore my life took a drastic turn downhill. Besides the loss of income and living alone does not help this either, I am now forced to count every penny and watch over one half of my disability income go towards rent. Even landlords think everyone is making all of this money. "Everyone" seems to be, except me!!

The daily isolation and loneliness are sometimes as bad as the pain itself to deal with. I was use to traveling for my work and being around a lot of people when I worked for over 20 years. I have not worked in eight years and have been thinking about trying to get out there again and get back into the workforce. Most people around me prefer to treat my chronic pain as "invisible" or even non existing -- as long as they do not have to deal with it themselves, they are very happy.

If I try to talk about my chronic pain in front of people, the "subject" will immediately be changed or I will be interrupted. This hurts beyond belief! It is as if I am invisible as well. I sometimes think my chronic pain would not be treated as invisible if perhaps I were walking with crutches or in a wheelchair or incased in a body cast. Thankfully, I am not experiencing any of those things but inside my pain can be excruciating at times and I feel just as bad on the inside as someone who may be in a wheelchair or otherwise incapacitated.

No one can "see" pain! It is a feeling and an experience that each chronic pain patient must endure alone. I think if the people closest to me were really accepting of me, they would not mind talking about my chronic pain -- not on a continual basis, of course, but at least every once in a while. But they will not, and that adds to my sense of isolation and feeling of "invisibility".

I am very glad that Rest Ministries is sponsoring the National Invisible Chronic Illness Awareness Week of September 22-28, 2003 and I believe the title "But You Look So Good!" is SO appropriate and I am sure all chronic pain sufferers have heard that phrase at one time or another. This Awareness Week will, hopefully, facilitate more of a dialogue with the general public and increase the public's understanding of what a chronic pain patient must go through each and every day!!!"

Sharon