Posts Tagged ‘But you don’t look sick’

WEGO Health; How The Spoon Theory touched my family

April 16th, 2013 by Carrie, the Just Mildly Medicated gal

Oh WEGO Health you keep me busy.
“Write a comment about someone else’s blog post as your blog post”

The post that has by far had the biggest impact on me would be Christine Miserandino’s Spoon Theory from But You Don’t Look Sick.

Christine was able to take an exchange between friends that has resonated and become identifiable to so many, it was a true gift shared. The Spoon Theory has given a tangible presence to Chronic Illness, something people with medical conditions that are not seen by others truly need.

My husband sat in doctors appointments with me and had an understanding that I was not well, after reading The Spoon Theory his understanding developed and turned into an empathy and support one could only hope for in a partner.

If you are not familiar please take the time to visit The Spoon Theory
Who have you shared The Spoon Theory with? Was it helpful?

As Wordless As My Wednesday Gets, The WEGO Health Activist Writer’s Month Challenge continues…

April 3rd, 2013 by Carrie, the Just Mildly Medicated gal

Wordless Wednesday: Post a picture that symbolizes Dysautonomia and my experience.

(yes I know, I have already put words down to explain Wordless Wednesday. I never said wordless was my thing…)

I opted to go personal and show me. I like the think of myself as a person with a lot more depth than ‘the girl with a chronic illness’ but the reality is I also feel split in two.

Dysautonomia has created a line for me and not just the one on my forehead that could use some botox. There is the before and after line, the one that like any major milestone divides life into two sections.

There is also the more ongoing line, the one that separates when you are doing well and when you are not doing well. For me the line is blurry and is ever changing. It is an unpredictable almost tangible guest in my life that has stayed far too long.

These are two sets of photos of me all taken within a few weeks to show Dysautonomia and my experience.

5 things to think about before saying to someone with a chronic illness (especially if you are an ass)

March 4th, 2013 by Carrie, the Just Mildly Medicated gal

In the chronic illness community we have a lot of inside laughs and some venting about things we hear pretty often. There is an entire website built around the ever so popular reaction of but you don’t look sick. So I thought I would poke some fun at things I have heard myself and have had others tell me people have said to them.

~ The ever popular “but you don’t look sick”

What I rationally know you are saying is “I am having a hard time wrapping my head around the fact that you are chronically sick, you look healthy” (I internally can replace healthy with ‘smoking hot’ if I need an ego boost)

What I hear on a grumpy day, or if you are in fact an ass. “There is no way it can be that bad, you look fine.”

If you can imagine for a minute the last time you were sick, remember that first day or the tail end of it when you were wiped out but had to get your act together to go to work, church or social event? Yeah, that is me on a good day. I can get my act together and with enough time I can get the hair done and the make up on. Please don’t undermine my condition by my effort to have some normalcy.

~ You’re on Facebook a lot / You post pictures a lot (replace with anything done from home really)

What I rationally know you are saying is “you’re on Facebook a lot” see I am not irrational, I might even add an internal “you’re on Facebook a lot and you are hilarious, I look forward to your posts.”

What I hear on a grumpy day, or if you are in fact an ass “Good God have you nothing better to do?” or “You post pictures doing things, it can’t be that bad”.

Yes, I am on FB… a lot. I have it on my phone and iPad which are with me all the time. I spend more time “relaxing” than most so I tend to use things like social media as a main form of social activity. I am not having lunch with friends or making small talk with work friends. I post pics pretty often because if I am putting the effort into getting out it is kind of exciting for me. When I am feeling good I want to shout it from the roof tops, so yep… you’re probably gonna hear about it.

~ My Aunt (neighbor, sister’s friend) had something like that and she got better after eating blah blah (taking blah blah or spontaneously healed after doing blah blah)

What I rationally know you are saying is “I hope there is a chance for you to be better one day” and I do too.

What I hear on a grumpy day, or if you are in fact an ass “you are clearly not doing something well enough because my Aunt/neighbor/sister’s friend is better now.”

I promise that I am in very regular communication with specialists. If broccoli is the cure I am going to hear about it.

~ “At least it isn’t terminal”

What I rationally know you are saying is “it could be worse, you have a lot to be thankful for.” Let me tell you I don’t take this lightly. I cannot imagine the impact a terminal illness has on a person and loved ones. I am thankful that my condition is not terminal.

What I hear on a grumpy day, or if you are in fact an ass “it’s not like you’re dying.” By the way this was said to me by a doctor while in the ER… grumpy day and he was an ass… So is this the new measure on how I should weigh news? So the next time you get horrible news, something really upsetting, imagine the person delivering it adding at the end “hey at least you’re not dying”, seriously! At what point does someone else need to point out that the good news here is that you’re not dying?

~ “You shouldn’t dwell on it so much”

What I rationally know you are saying is “I worry that the focus on your not being well is negative.” See, on a rational level I get what you are saying.

What I hear on a grumpy day, or if you are in fact an ass “OMG this again”.

This is life altering and impacts my family every day, even on my good days. There are many things about me other than my illness. I love reading, I have been an Army wife for more than a decade, I am a mom of four kiddos, I have a new fixation with hair braiding and am a loyal Walking Dead fan.

I chose to be open about Dysautonomia. It was an decision my husband and I made, talking about the pros and cons of letting people know the details. If all you know about me is my illness then kudos to me bringing awareness to someone who didn’t really want to get to know much else about me.

This post was brought to you by dumb things people say and ecards :)