Looking for the Purple Horn
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October 20, 2010 at 12:40 am
When people ask what is wrong with me–I wish I had some obvious symptom (maybe a mythical purple horn on the top of my head—similar to a unicorn). I truly feel like a unicorn sometimes. It is a good thing that I have a positive attitude about it!!! When I tell them that I have CIDP the initial response is a “blank” look, even from my local doctor. No one has seen a unicorn like me. In fact, being from a small town I have never met anyone with my condition. Being a former RN I realize that the general public and many professionals have never heard of it, much less seen someone with it. Unfortunately, there are no outward signs that anything is wrong with me—except I walk funny and cannot go uphill or navigate stairs very well. It really makes people doubt that anything is wrong with me. My own family had doubts and suggested that I just needed to exercise more. The turning point for me was the pathology report from a recent nerve biopsy. It left no doubt about the diagnosis. I felt validated and relieved. People are now more sympathetic. Have you had similar experiences???
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October 20, 2010 at 1:39 pm
I hear you. When I was diagnosed years ago I was also about 40 pounds overweight. I can’t tell you how many people made derrogatory comments about how my disability was because of the weight. I was called names and laughed at. I fell down at a gas station and someone pulled his car up next to me, opened his window, and laughed as I struggled to get up and simply couldn’t…he said, “Lose some weight and you might be able to walk like a normal person.” Argh, ignorance is never bliss with CIDP.
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October 20, 2010 at 1:46 pm
I was diagnosed with CIDP 23 years ago. Whenever I see someone struggling, or someone not struggling but using the hadicapped stall in the bathroom, or someone who has the sticker on the car but “looks normal”, I always think to myself that no one ever knows the physical demons some face every single day of their lives. I am thankful every day that I can climb steps, brush my teeth and hair without help, and stand up on my own. There was a time when I couldn’t.
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October 20, 2010 at 2:34 pm
Even though I do not have a purple horn on my head, I too have gained some weight due to not being as active as I once was. I can certainly understand some of the issues that you had. As I mentioned previously, I was even ridiculed by co-workers and some family members. I got (and am still getting) the “exercise more” suggestions. When I park in a handicapped space (now that I have the tag) people have actually questioned my health situation, not knowing that I cannot walk very far at a time. Since I have had mobility issues, I am much more sensitive to handicapped accessibility and the plight of others like me.
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October 20, 2010 at 3:26 pm
I get the “exercise” comment from my best friend all the time too….noone can understand it unless you go through it. At some point, you stop telling your family and friends how bad it is because they don’t want to hear it, so you suffer silently. Little do they know how much effort it takes to do daily activities, let alone exercise!! Ugh.
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October 20, 2010 at 5:33 pm
Thanks for your comment. It really helps to vent a little with people who really understand.
P. Lyons—CIDP
Diagnosed July 2010
after many years of mystery
symptoms and misdiagnosis. -
October 21, 2010 at 1:28 am
When I first began to walk again (after 2 1/2 years in a power chair) I was vain about wearing shorts, as i have to wear AFOs all of the time. So to most people, I was a middle-aged person who carried a cane. Most probably thought I had either had a hip or knee replacement, or was waiting for one. Once I began to wear shorts or capris, then it made others realize that I did have some kind of permanent & more serious disability. I wear shorts now whenever I can, even though I live in northern MN! There is a saying that you know you are from MN if you have worn a winter jacket with shorts (a joke on how cold our summers can be.) Well, that is me!
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October 21, 2010 at 2:38 am
I’ve really enjoyed this thread! When I get irritated I’ll remember the “purple horn” and smile to my self 😀 Thank you.
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October 21, 2010 at 10:40 am
As we all have to deal with various stages of the disease and the trials and tribulations associated with it, it is always good to have some humor. The “purple horn” is my way of dealing with it. Keeps those endorphins flowing!!! I tend to look for the positive in all things…that makes life worth living.
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