An illness by any other name…

September 13th, 2013 by Carrie, the Just Mildly Medicated gal

During Invisible Illness Awareness Week many people bring awareness by filling out the “30 Things about Me and My Illness” questionnaire. For me that was the beginning of my being open about my life with Pure Autonomic Failure, also called Bradbury-Eggleston syndrome, which falls under the umbrella of Dysautonomia and causes an imbalance in each of the bodies involuntary functions.

In the questionnaire people are asked to answer and elaborate on if given a choice would they choose a visible medical issue or an invisible illness. The answers vary from person to person and often times when revisited our answers change. People frustrated with explaining ever changing issues with an invisible illness may think they’d trade for something visible; something clear and inarguable. Others, like me a year ago, were content with invisible feeling a sense of control over inviting people in to know the struggle or not.

This year I found myself on a slightly different version of this question…

If the choice was mine would I chose a different, yet just as debilitating, illness?

For example Pure Autonomic Failure has 2 other ‘sister illnesses’ that are sometimes categorized as Primary Autonomic Failure. The other two medical conditions are Multiple System Atrophy (Shy Drager Syndrome) and Parkinson Disease. Back to the days of my Sesame Street viewing; one of these things is not like the other. One is a household name; the other two are fairly unknown even in the medical community.

Would I trade my illness for one that was equally debilitating but a household name? YES

Please keep in mind I am not comparing the illness per say, more the social awareness of a name.

An illness by any other name…

Michael J Fox has brought Parkinson’s research to a whole new level and is about to bring it into your living room with his new show starting this month. Many people thought Dr. Gregory House did Lupus a disservice by always saying that the diagnosis was in fact never Lupus. What we have to agree on is House made sure everyone knew the word Lupus. Now I am not saying I need a celebrity spokesperson or a TV shows catch phrase, but it sure does help with bringing awareness.

Just like the original question posed in “30 Things about Me and my Illness” my answer may change next year, or even tomorrow.

What about you, would you trade your illness for one people have a basic understanding of or maybe you have a more publicly known illness that you’d trade for something that hasn’t been in the media giving people the assumption they know about it?

30 Things about Me and Dysautonomia 2012


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7 Responses

  1. Anastasia says:

    I found out about Lupus from Gross Anatomy. First time I’d ever even heard of an illness that could be misidentified. Now it’s the story of my life. I’ve HEARD of Dysautonomia before, but it never registered until a friend’s child was diagnosed and I found out. Same with Autism 20 years ago, now EVERYONE knows what it is. Our world while widening is also growing ever smaller as well.

  2. Hiro says:

    The “sibling condition” for Arteriovenous Malformation is Aneurysm. In my case, it would have been a Brain Aneurysm. While it would be nice to have had a more well-known condition when I was going through the process (it’s so rare that there’s rarely any resources or support about it), in the long run, I think I am glad that I had an AVM instead of an Aneurysm, because now, I am able to make a difference in people’s lives by spreading awareness, and also, as a condition, you cannot get rid of an aneurysm, but you can get rid of an AVM. So in my case, my “ticking time bomb” is gone, and cannot cause a stroke, because I had them go in and cut it out. If I had an aneurysm, I would have had to have it stuffed with coil or glue, but they wouldn’t have been able to actually “get rid” of it, which would have kept me very nervous about my life.
    But I do hope there will be more awareness for AVMs and your conditions in the future, so people do not have to experience what we have been experiencing.

  3. Vicky says:

    I have a friend whose sweet baby boy is just over 1 year old. He was born with a disease I don’t remember the name of. In fact when she was pregnant with him, my friend was told his chance of survival at birth was minimal. They lashed forward, confident that this pregnancy was no accident and brave enought to face their futures.

    Here we are almost 2 years later and be is thriving. He’s had 3 surgeries and many more are in his future. Will he ever be “according to the boos normal”? No. But will he heave a full and happy life? You bet.

    My point is that as my friends educate themselves about how best to help their son achieve all be can they do so with 30 year old research. Why? Be use no one famous has had a kid with their son’s illness. Research is slow. Discoveries are slow. Progress is slow. It makes hope slower at times as well.

    She said to me as we sat on the beach 3 weeks ago, watching her little guy butt scoot down toward the water, that she wonders how much more information and how many more options and dreams they’d have if Angelina Jolie’s kid had what her son had.

    There is a lot of power in a name.
    Awesome post friend.

  4. Rusty Hoe says:

    I don’t know if I have a particular disorder I’d pick but the idea of having a disorder whose name alone is a short hand of information would be lovely. I look at certain well known disorders and you say the name and people have a basic understanding of what it means, seriousness, treatment etc. Dysautonomia means?????? We are missing that short hand at present and I feel it when I discuss it with family, friends, strangers, and even the medical profession.

    I must admit I quite admire MJF, what he has done for Parkinson’s is phenomenal and he is a warts and all kind of guy, rather than many celebrities who present a sanitised view of their illness, all pep rally and no bent over the loo vomiting and crying. The sanitised celebrity version is often not a realistic portrayal for regular folk especially with relation to access to service that their financial and celebrity status gives them. But that’s a whole other discussion :)

  5. Joann says:

    To be diagnosed with something that people understand would relieve so much of the burden. To be honest I will be glad if/when I actually have a more definitive diagnosis. Right now, doctors agree there is something wrong and they are pretty sure it is hyper pots, but they also say my most debilitating symptoms are not caused by this. So, trying to describe to people what is wrong with me, is really difficult. Many people think I am a hypochondriac,a baby,or just crazy. I cannot drive, go up any stairs, or bend, or lift anything heavier than a 1/2 gallon of milk and yet I have been asked if it could be stress related? To be able to say I have ________ and people understanding it would be so great! I have told people I will get a bull horn and announce it to everyone when I know. If that something is a more well known illness that would be a bigger bonus. LOL!

  6. RageMichelle says:

    Wow..this is very interesting. So sorry that you have to deal with it, though.

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