Four Days of Health Activist Writing – #HAWMC

Once again, I’m behind on my daily WEGO Health Activist Writer’s Challenge prompts. No surprise there. So, my apologies, but this post is yet another one that is playing “catch-up!” Below you will find my submissions for Days 12-15.

Day 12: Prompt: “Time to get real.Write a letter to the best or worst healthcare professional you’ve seen. Don’t hold back.”

Doctors, nurses, and other healthcare providers are godsends. Heroes. Rockstars. Saints. I have praised doctors, nurses, and other HCPs many times over, and I have the utmost respect for most in these fields. But today, I’ll opt to write the not-so-nice letter. It’s also worth mentioning that one of my worst-ever doctors is chronicled in my book Sick Idiot. His pseudonym in Sick Idiot just so happens to be Dr. McDummy, however, Dr. McDummy is actually NOT the one who I’m writing my  letter to. I’m writing a letter to all of the Dr. McSkeptics and Nurse Naysayers out there.

Dear Emergency Room Healthcare Providers,

First off, thank you. I thank you for the important, life-saving work that you do. I appreciate you.

That said, I do not always appreciate the way that you treat me, and others like me. I know that you’re overworked, tired, and often understaffed. I know that people probably treat you awfully. I get it. But, that still doesn’t excuse your attitude towards me and so many others.

We’re the ones that are relatively young, seem relatively healthy at first glance, and who “look fine.” We’re the “hysterical females” who seem to be “worked up.” We’re the ones who, in numerous studies, you’ve admitted a bias towards, whether conscious or subconscious … just because of our age and our gender. (And likely, even more so if we are also minority or LGBTQ on top of it.)  

I know that when a patient comes in who has a chronic illness or a disability, that it is easy to attribute all of their symptoms to their pre-existing condition. It’s EASY, but, I ask you … is it right? Listen: I know that you’re taught to look for horses when you hear the hoofbeats … not zebras. But, the reality is that some of us ARE zebras. Just because we’ve had a panic attack before doesn’t mean that our chest pain or tachycardic heart rate or difficulty breathing is automatically a panic attack. Just because we seem a bit emotional while at the same time complaining of excruciating pain does not mean that we are drug-seeking or exaggerating. Emotions run high when you are in extreme pain, and they run even higher when you’ve been transported to the emergency department via ambulance.

Just because we are not doing so hot doesn’t mean that we don’t notice the skeptical looks. Trust me: most of us can practically FEEL your cynicism. And, again: I get it. You’re probably a little jaded. You see a lot of hysterical patients, a lot of attention-seekers, a lot of drug-seekers, a lot of addicts, a lot of crybabies, a lot of drama queens, a lot of drunks, a lot of jerks, a lot of people just trying to get a fix or even a warm bed for the night.

But, for a lot of us, if we are at the hospital, it’s bad. Something like 42% of Americans live with a chronic illness and about 28% of Americans live with a disability. So, there’s a good chance that we aren’t faking, that we are suffering. There’s a good chance that we don’t just want drugs for a recreational high, but rather, because we need some kind of respite and relief.

I feel you questioning me. Then, I feel you questioning me less when my husband is around. I feel you taken aback when I am throwing medical jargon around like its my job — and often being right. I see your shock as I begin to tell you what to do because you’re at a loss. And I feel you shifting towards respecting me when you finally realize that, no, I wasn’t having a panic attack and, no, I didn’t want or need adenosine, and that all I needed was for fluids to be pushed hard and fast.

I feel you beginning to take me more seriously when you review my extensive and complicated medical history. I feel you shift from holding back your eye-rolls to “wow, something actually IS wrong with her.”  

My problem isn’t with the initial standoffishness, though. After all, as a physician or even a nurse, your job is sometimes to stay emotionally detached, to approach the situation pragmatically and logically, almost like a detective trying to solve a mystery in the most rational and obvious way possible. You were taught not to look for the exception, and so you often don’t. So, that’s fine.  

My problem is the lack of trust stemming from doctor or nurse to patient.But, trust works both ways. We, as patients, are asked to trust our healthcare providers, and so I ask you to trust that most of us who live with chronic illness are experts about our own disease.

My other problem is a lack of respect towards female patients in particular. When my husband isn’t in the ER with me, I am talked down to, condescendingly. I am reassured like a child. I am talked over, or interrupted. It is patronizing, pandering, and I am not taken seriously. I am seen as emotional: a hysterical woman, the proverbial madwoman in the attic. I am “mansplained” to, even by female doctors … until they realize that I’ve been at this for a long time, and, while I’m not a medical professional, in many cases, I know what’s up. I’m not going to self-diagnose or self-medicate, but I do want to collaborate when it comes to my healthcare. I want to be informed and in the loop. I want to be a part of the decision-making process when possible. And I want to be treated like a person, and not a patient.

How would you feel when a woman came in to your emergency department with a dangerously rapid and irregular heartbeat, and  you tell her she’s “having an anxiety attack,” only to find out she actually has an autonomic nervous system disease that causes sinus tachycardia and sometimes supraventricular tachycardia, among other things? That woman was me. For years, I would get blown off because no one was looking for the zebra. This also happened years prior: my head would feel as though it was going to explode and for some reason, I was put on anti-depressants … until a neuro-opthamologist caught a brain herniation protruding into my spinal cavity for which I eventually needed a simultaneous brain and neck surgery.

Everyone just thought I was an anxious and depressed young woman: because, if you are female, it is more likely to be assumed that our symptoms are psychosomatic. That it’s all in our head. That everything we are and everything we do is controlled by emotion. But guess what? Sometimes our bodies rebel against us the same way’s a man’s does. So I ask that you give us that same respect. 

Sincerely,

A Frustrated Zebra 

 

Day 13 Prompt: (This was from Sunday) – What’s the best thing that happened to you 15027643_1509992865684001_4847586442922508040_nthis week? Maybe you got great news or maybe ice cream was on sale- write about it and relive it!

I am copying-and-pasting a Facebook post from Sunday because it sums this up pretty perfectly.

“If I’m being honest, Thanksgiving 2015 through all of 2016 has been, by far, the hardest year of my life.

I’ve faced insurmountable, nearly unfathomable health challenges, one after another.

I’ve faced professional and personal letdowns and disappointments.

I’ve had trouble losing weight, and I’ve been sick, and I’ve been hurting.

I also lost one of the greatest and most influential people of my life, very unexpectedly, which caused me unimaginable heartache.

I felt that, between my health and physical pain/limitations, and other personal stressors & woes, that some of my hope and my confidence died with him.

Beyond my own struggles, I’ve seen too many other people hurting this year: family members, friends, our nation, our world. Fellow women, fellow patients, fellow disabled people.

Fellow human beings.

But I’m ready for a new start and ready to ignite a spark of hope again. I want to get back to being “me,” and I’m putting my all back into building my brand and growing my career as a writer and patient advocate. I have had many opportunities over the years for which I feel grateful. I’m thankful, and I know I’m blessed.

But I needed yesterday more than anyone could know: 3 pitches with 3 literary agents who all gave positive feedback and wanted to see more from me. Even if nothing comes of it, it gave back a part of me that I’m not sure I knew I was missing.

My health problems are sometimes beyond my control, but my career & my goals are manageable … and they are all me!

The fire has been lit again, and for that, I am grateful. I didn’t realize how much I needed that until this weekend.

Thanks to the agents and editors who I met with yesterday, and my fellow writers, and to Lindsey Smith for telling me about the #PitchPublishPromote event!

I know I have work to do (and room to learn, grow, and become more polished,) but I’m ready for that next step & I’m grateful for any small opportunity or stepping stone to help to get me there. Maybe 2017 will be my year! I just wish my Bups was here to witness it, but I know he was w/ me at the conference yesterday!” 

So, basically, the Pitch, Publish, Promote Conference was the best occurence of the week!

Day 14 Prompt: “Case of the Mondays. Write about something that gets you down, burns you out, or makes you sad. Purge it in a blog post. Turn it around at the end and tell Tuesday why you’re ready for it.”

Again, I feel that I can copy-and-paste a semi-relevant recent Facebook post to answer this one.

“Life is interesting. I was supposed to be having thyroid surgery today due to a possible thyroid malignancy, but it got postponed for at least 6 months, if not indefinitely, which is amazing. I’m glad that my second round of tests came back more reassuring and that I can kind of just “wait and watch.”

Now that that’s on the back burner for awhile, I focus on my knee, my foot … and my work!

Continuing with PT as I’m able to.

Consultation for knee replacement is next week… but I tweaked it today so I may have to go earlier.

Foot cast will come in soon, so I will need to get some (not-so-attractive) new shoes in my life.

Stem cell therapy consultation will be scheduled today. I assume I’ll get an appointment for them in December.

And I’m really excited about some new work I’m going to be doing with The Autoimmune Registryand my books! (I am also enjoying helping Peachshare her story.)

While 2016 has been a tough year (to say the least!,) I really hope and pray that the coming year is the one where I get healthier and stronger, improve my physical ability and mobility, get even more involved in the patient advocacy community, and take my writing work and my books to the next level.

I also can’t wait to see what the Autoimmune Registry has in store and the wonderful work we’re going to do together, just like I can’t wait to see what’s in store for Peach and her journey.

Life is hard sometimes, but life is good. Let’s focus on the good.

Keep up with my story at abshuck.com and arthritisashley.com 🙏🏼

[Books: Sick Idiot, To Exist, Chronically Positive 📚]”

Day 15 Prompt: Time to spread the love. Shout out all your favorite HA’s! Make sure to share a few sentences explaining just how grateful you are for them.

Oh, my goodness! There are just too many great health activists to list. I will give a shout-out to the following folks for their tireless work in the fields of patient advocacy and health coaching. I am getting tired, so please  just take the time to check out each of their websites and/or Facebook pages so you can learn more! I am so very grateful for all of the awesome and inspiring work that they do to give a voice to the patient and wellness communities!

Shout-out to: Julie Cerrone, Lindsey Smith, Mary Judge, Tori Aquino (and Mariah!), Christine Schwab, Summer Scirocco, Britt Johnson, and so many others! I try to show them love via social when I can. I’m always up for supporting my fellow health advocates and activists and I love and appreciate when they do the same for me. So thanks to you all! XOXO

PS: Please excuse typos … I’m a sleepy spoonie! – A

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s