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Posted on 3. March 2011

Name That Disease

By Kris McFalls

“Back in the day" women personalized their menstrual cycles as a way to warn friends and family about their impending premenstrual syndrome, PMS. People didn’t want to hear the details; they just wanted a fair warning that PMS was on the way. Therefore, women personified their menstrual cycle with endearing names such as Aunt Flo. Everyone knew that when Aunt Flo was about to visit, they needed to have a little more patience and understanding.

Enduring the symptoms of chronic disease is much like having a visit from Aunt Flo on a less predictable schedule. So, what if we treated chronic disease much like a woman treated her PMS? What if we personified these invisible diseases? I’ve taken the liberty of personifying a few of them for your reading pleasure.

Chronic inflammatory demyelinating polyneuropathy (CIDP) is way too long of a name. You practically need a medical degree to understand it, and a speech pathologist to teach you how to say it. I would call CIDP Grace. She is a presence not to be ignored and, in fact, she burns with desire to make her existence felt. Life with Grace is unpredictable, which can make walking with her a bit of a challenge and may require extra support. Grace will teach you what it means to appreciate the life you have.

Primary immune deficiency disease (PIDD) would have to be called Mr. Ed. If it looks like a horse, talks like a horse and sounds like a horse, it must be a horse, right? You would be wrong. Mr. Ed, made infamous in the 1960s television show as a horse, was in fact a zebra. How appropriate that the Immune Deficiency Foundation has adopted the Zebra as their mantra. 

Fibromyalgia would have to be Casper, after Casper the friendly ghost. Not everyone believes in Casper, but those that know him well feel his presence every day. He is with them when they wake up in the morning and sleeps with them every night. Some people think Casper is an imaginary friend. They have trouble believing Casper exists. But Casper can really make his presence known to those who believe in him. Some day, doctors will find a magic potion so that everyone will be able to see Casper.

I would call colitis John. John and I would have a secret love affair. I could visit John multiple times every day. John would see a side of me that does not often see the light of day and yet he would never complain; he would be such a good listener. There are days when I would suddenly need to unleash my burdens on John. He would always be there ready to support my load. John would take in whatever I needed to dish out and then just flush it away like nothing ever happened.

Talking about a chronic disease should not make people want to run as fast as they can. It should also not be the only topic of conversation. Maybe if we can inject just a little bit of humor and personality that others can understand, it will make the burden lighter for all. So go ahead and tell us: What name would you give your disease?

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Categories: Life With IG

Comments (9) -

Janet Kaye
9:08 AM on Friday, March 04, 2011

Kris, your humor is spot on!  Thanks for nicknaming my "friends", bringing a smile to my face & a much needed laugh to my day.  This is also a welcome reminder of how lightening up my thinking helps me to feel better.

Donna Hiebert
10:47 AM on Friday, March 04, 2011

I have myasthenia gravis and it makes me feel very tired at times.  My daughters could never remember the name for the disease so that would say is that because of your Maggie?  I would just reply, yes. I think we have all had visitors in our life who just wear us out and Maggie is a regular in my life.  

Rachel Rich
11:36 AM on Friday, March 04, 2011

Thanks for the chuckle.  Let's see.  I'd call CVID, common variable immune deficiency, Ted The Thief.  Gee, I thought I had an immune system, where'd it go?  I could have sworn I had a normal temp last week, where'd it go?  CVID reminds me of one of those kids that stole your lunch money out of your desk one day and your package of brand new pencils the next.  

Lisa
12:43 PM on Friday, March 04, 2011

Mr. Ed was a palomino named Bamboo Harvester...

Penny
12:51 PM on Friday, March 04, 2011

Very Good Kris - love the humor thru this blog.  Right now Arthur is Mel's best friend, and Mel just wants him to go away!  Love you, Mom

Bradley
1:02 PM on Friday, March 04, 2011

Thanks for the nice article... but Mr. Ed was definitely a horse! Smile All the same, the zebra is still a good mascot for the IDF, if not for the reason you mentioned.  Willllllburrrrrr!

Betty
1:43 PM on Sunday, March 06, 2011

Susan our local PIDD director does not name the disease but the "cure" gammaglobulin is her energy juice and she'll say she's in need of her " energy juice yoday:">

Donna-- Maggie (the character isplayed by someone who has MG)  on Days of Our lives  has myasthenia gravis- so you picked the rivght nbame

Laurie Wilson
3:39 AM on Thursday, May 23, 2013

I was diagnosed at 38 first with thyroid tumors so out it came non cancerous.  Then Chiari malformation,  pseudo tumor and hydrochephylus. 17 brain surgeries laterand throw in degenerative disc in my neck so 2 surgeries to fuse several. It was like dominoes, life was great had 4 kids and a great husband, still do. All this took place over 4 years and yes I went to the BNI in phoenix and I had great faith in my Dr.who's wife was my best friend. He saved my life just in time. My health has never been the same. We moved to Colorado for a slower life pace but I still confuse the drs and we have traveled to other states hoping for help. It has been 16 years more surgeries. Need oxgen 24/7, IV infusion twice a week. We know when to say no to some Drs who think they know you within 30 min. Most days are bad but my joy is my kids and grandkids. They live in another state so I only see them maybe twice a year since traveling is hard and my husband has this thing called a job. The only name I could come up with was Cybal, never know who is going to show up at anytime.

mamayanie
8:55 AM on Saturday, May 24, 2014

This is a lovely idea. I have a vast constellation of autoimmune disorders - they are always with me, so Constance is their name.

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