I am so proud of my friend and fellow warrior for the way she chose to respond to this incident. Nobody should ever feel bullied for being strong enough to share their story and experience with the world in hopes of raising awareness or finding answers.
The Blogger Recognition Award comes to me from SpoonieMom from A Spoonie’s Tale. Thank you so much for nominating me for this award.
The rules of this award are:
1. Thank the blogger who nominated you.
2. Write a post and display the award.
3. Share in your post a brief history of how your blog started.
4. Give advice to new bloggers.
5. Nominate other bloggers you feel deserve the award.
6. Let each blogger know that you have nominated them.
I started Undiagnosed Warrior as more of a personal journal that friends and family could read as a way to keep up with my search for a medical diagnosis. Although I had been searching for a diagnosis fto my unexplained symptoms for about five or so years prior, although it was to a much smaller extent than what was eventually going to come with starting my care at one of the top-rated hospitals in the country. Even beforehand, though, I had spent much of my childhood and teenage years going from doctor to doctor but had been met with a great deal of opposition from the medical community since I was a young, highly productive female with nonspecific symptoms that varied substantially from day-to-day – and from one year to next. Nevertheless, I had never imagined that my blog would turn into what it has over the last year and a half, nor did I think my blog would lead me to all the opportunities it has, such as becoming a part of an amazing community and being able to “meet” so many strong, intelligent individuals who had gone through exactly what I had gone through. Essentially, the Undiagnosed Warrior Blog has taught me how to not only advocate for myself but for others as well. It gave me the ability to learn and seek out more information. It provided me support when I felt alone. Ultimately, it’s what led the way to my diagnosis – actually, multiple diagnoses – some of which were so rare that I’m not sure any of them would have been found without the help of everybody in the blogging community and on the Facebook support pages. So thank you!
It’s because of this blog and my followers that I continue to remain strong and I’m determined to bring awareness to the injustices and difficulties that result from the current state of our medical systems. It’s not in our heads and our symptoms are real – we will prove it! (although it’s a shame that we have to…)
I am not a “professional blogger” by any means, so really the only advice I can share is to keep telling your story – to anyone or anybody that will listen. Personally, I think the more we talk about chronic, invisible, or undiagnosed illnesses , the more likely other people will begin to understand where we’re coming from and how hard life truly is for all those who are suffering. With time, my hope is that the stigma of chronic illness or pain will be removed from society and we’ll gain additional support us in nearly the same way that the public has become tolerant of other forms of illness or disability.
Again, huge shout out to Spoonie Mom from A Spoonie’s Tale. When you get a moment, check out her blog as she offers such good information about living with a chronic illness and how to make self-care important.
(Of course, they are under no obligation to participate.)
- Finding Life’s Silver Sun
- Kelly Alive
- Midnight Knitter
- Polishing Dookie
- Strange Label
What does “Undiagnosed” mean?
“An undiagnosed disease is a medical condition without a known cause despite a lot of evaluation.”
What is Undiagnosed Day?
Undiagnosed Day takes place on the last Friday of April each year. The main objective of Undiagnosed Day is to raise awareness among the general public and decision-makers about undiagnosed diseases and their emotional, physical and financial impact on the lives of the patients and their families.
The campaign targets primarily the general public and also seeks to raise awareness among policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in undiagnosed diseases and genetics. Since 80% of rare and undiagnosed diseases have identified genetic origins, it is imperative to raise awareness for the importance of genetics in the diagnostic odyssey of undiagnosed patients.
We created the Undiagnosed ribbon from Ava Szajnuk’s drawing. Ava is eight years old and Undiagnosed. Since zebras represent the rare community, we envisioned having a zebra ribbon with baby blue and baby pink colors added to it. Undiagnosed community is a part of the rare community but they stand alone as well. All rare diseases were once Undiagnosed.
Help us raise awareness for Undiagnosed Day on April 29, 2016.
Thank you for your continued support of the Undiagnosed community.
Please email email@example.com if you would like to join our Undiagnosed Alliance.
RUN Co-founder and Executive Director
Utah Rare 2016 Committee Chair
NORD Utah State Ambassador
W http://www.rareundiagnosed.org – http://www.runmydna.com – http://www.utahrare.org – http://www.rarediseases.org
E firstname.lastname@example.org – email@example.com – firstname.lastname@example.org
P (310) 883-4353
It’s been nice to have a break from normal life for a few weeks during the holidays. No school. No medical appointments. Perfect, right?
Except for the fact that I spent most of my break in bed with a giant flare.
Now, with the New Year upon us already, life is reverting back to its old, crazy self – my so-called “normal”. Three medical appointments this week, but luckily no tests. Also, need to get my mind ready to start back at school next week, finish all of my To-Do projects, and organize my medical management for the New Year, which I, of course, waited until my break to do. Needless-to-say, most of it didn’t get done.
Still, despite being super sick for weeks, I was able to finish one thing from my list that I promised myself I would do over break — finish a book from my personal reading list. Thankfully, this I was able to do from the comfort of my bed.
In all fairness, though, I really only had half of the book left to read since I had started it over the summer. Just haven’t had the time or the mind to finish it — until recently. I carefully opened the book to the page that I marked many moons ago, which opened up to Chapter 7 in When You’re Sick and Don’t Know Why (1991). Such a Fitting title, right?
I guess you can imagine why I wanted to read this. Before I even made it halfway down the page, the book already had me thinking. I thought that maybe I shouldn’t finish this book after all (or at least not during my vacation from being a professional patient), but continued reading anyway.
The first line in the chapter read:
Are you a good patient?
Of course I am, I thought, perhaps too naively.
At least, I think I’m a pretty good patient anyways.
- I educate myself as much as possible about my health conditions.
- I’m always on time for appointments — if not early.
- I ask a ton of questions.
- I am polite and patient, even when I am annoyed or frustrated.
- I am an active participant in my healthcare decisions – at least, I think.
That’s pretty good if I do say so myself. But do my doctor’s appreciate these qualities in me? Maybe, maybe not. Or at least not all of them do anyway.
I’m quickly reminded about all the times I had been let down by my doctors: told that my symptoms were all in my head; that it was just anxiety or depression — even dehydration. Sometimes I wonder who actually takes me seriously.
Perhaps they treated me this way because of the type of patient I was being?
The more I thought about it, the more I began to question myself.
Am I really a good patient or do I just think that I am?
It’s too hard to tell. I have enough trouble figuring out what each doctor is thinking, especially when they say one thing and write something different in my charts. That, alone, is bad enough. And, just like anything else, I assume each doctor has their own preferences and ideas about “the perfect patient”. I’m sure some doctors appreciate my willingness and eagerness I put into my healthcare — some have even complimented me on my level of organization on my medical records. However, I bet most do not because of the fact that I am somewhat “needy” as a chronic illness patient and being needy requires a lot more “work” than the average patient.
I was interested in what more the authors of the book had to say about this topic. Mainly, what EXACTLY defines whether a patient is good or not? And what makes one type of patient better than another?
The stereotype that comes to mind is someone who doesn’t
complain a lot, follows the doctor’s orders to the letter, and doesn’t ask too many questions. He or she is submissive and
conforms to the system.
(Hanner, Witek, & Clift, 1991, p. 95)
Of course, silly me. That would be the obvious answer, wouldn’t it? At least from a doctor’s perspective anyway.
Basically —Compliant— in all aspects of the word.
Definition of compliant in English: adjective
- I often am inclined to be agreeable with my doctors.
- I always follow the rules.
- I am compliant with my medications and recommended treatment plans.
- I follow the system, even it I don’t agree with it.
- Why? Because I have no choice — play the game or you get nowhere in healthcare. That’s just the way it is.
- I don’t show anger or frustration to anyone in the healthcare profession, even if I am.
- I do ASK questions and state my concerns over recommended medications or treatment plans and why they are necessary.
- I will stay on top of you to do your job, especially if things aren’t getting done.
- I bring others with me to appointments who can help me with questions or remember what the doctor said.
- I come bearing hundreds of pages of medical notes and lab results.
- I must clarify: If I don’t bring them, then I am asked about them or you want a copy. It’s just easier to have it on hand.
- I more than likely have done more research on my diagnoses than you ever learned about it in medical school or even in practice, and I will correct you if something you say is inaccurate.
- I will also quote recent statistics taken from peer-reviewed journals. I am THAT good. Also, don’t be surprised if I hand you a copy of a research article to reference.
Now I really wasn’t so sure about myself.
The authors then go on by saying:
In fact, the word patient means to endure suffering without complaining.
(Hanner, Witek, & Clift, 1991, p. 95)
But I am so tired of being patient…
and of being a patient…
How long am I supposed to suffer?
Haven’t I suffered enough in my own body?
Many doctor’s prefer patients who don’t make waves – simply because they require less time.
(Hanner, Witek, & Clift, 1991, p. 95)
I understand not making waves, but what about small ripples?
Modern clinics and hospitals focus on efficiency. The less time spent with each patient, the more patients processed in a day. The doctor takes charge by telling the patient what to do rather than offering alternatives.
(Hanner, Witek, & Clift, 1991, p. 95)
Okay, so now we’re getting to the real answer here.
Trust me — I get it. Our healthcare system is broken and is pushing doctors more and more each day. I can only imagine how hard doctors work each and every day, not to mention the pressures and burdens they must feel at times. In one of my posts from earlier last year, I Know the Shame in Your Defeat, I even wrote:
Having come from veterinary medicine and working with many doctors over the years (just not of the human kind), I do know how stressful and frustrating your job is on a day-to-day basis. That is the reason I’ve given so much slack to those working in the healthcare industry, especially my doctors. It’s not an easy job, both mentally and physically. But I also can’t accept the care I’ve been given either. My animals should not get BETTER care than me, I’m sorry.
There’s no excuse. I agree there needs to be a change in how things are done, but it isn’t MY fault. Nor is it any other patient’s. Don’t take it out on us or get frustrated with us for expected a certain level of care, despite your time limitations.
Patients are gradually becoming more aggressive, demanding involvement in decisions. Some doctors are beginning to realize that keeping patients in the dark is not in the best interest of either party.
When patients share responsibility for decisions, they are less likely to blame the medical profession when results are not what they hoped for. When patients are aware of details concerning tests and records, they are more likely to catch mistakes that have been overlooked.
(Hanner, Witek, & Clift, 1991, p. 95)
This just makes obvious sense — at least, to me.
I know that I am responsible for my health and healthcare management. I also know that most doctors don’t have time to do it for me. It goes without saying; if not me, who?
If I don’t fit all the required qualities to be considered a “good patient”, am I a bad patient then?
And what qualities labels as a patient as bad?
Stay tuned for Part 2: The Bad Patient to find out
Compliant. (1989). In Oxford English online dictionary (2nd ed.). Retrieved from http://www.oxforddictionaries.com/us/definition/american_english/compliant
Hanner, L., Witek, J.J., & Clift, R.B. (1991). When You’re Sick and Don’t Know Why. Minneapolis, MN: DCI Publishing.
I’ve always hated these types of questions.
You know the ones I’m talking about – the get-to-know-you questions:
What is something that no one knows about you?
Do you have a hidden talent?
If you could have any superpower, what would it be?
It seems like these questions come up in almost any activity…
At school or at work.
Sometimes even when meeting new people.
I never felt that I had a good enough answer.
Or perhaps, just maybe, I was just ashamed of my secret. I had kept it inside for so long, almost too afraid to let others to see the real me. As I got older, though, I finally learned to accept the “gift” that I had been given. Although I didn’t know it back then, I was born with quite a special super power:
The Ability To Make Myself Invisible
Think about it…
- You can hide in PLAIN sight.
- Other’s are only allowed to see what you want them to see.
- You come across as being intriguing, leaving others to wonder where you’ve run off to.
- You can leave someplace you don’t want to be without anyone noticing.
- You are able to live a secret, double life.
- You learn how to be self-reliant.
- You come across as being intriguing and mysterious, leaving everyone to wonder.
- Your observations of the world are spared from the observer effect (where people act differently when they know they are being watched).
- You’re able to adapt to each and every situation or environment you meet.
- When you do finally reveal your true self, others are either in complete shock by what you have been through or they are surprised merely by the fact that you were able to hide your super powers for so long.
Let’s look at Batman, for example:
The article I found on Psychology Today explains the power in invisibility almost perfectly:
“The comic books series relies critically on Batman as a storytelling device while rarely showing him. Written by Ed Brubaker and Greg Rucka and illustrated by David Lark, Kano, and others, Gotham Central was a series that chronicled the lives of members of the Gotham City Police Department as they tried to do their jobs in a city inhabited by masked vigilantes and criminal psychopaths. The absence of Batman from most issues of Gotham Central belied his importance to the story line and how he defined the life of the GCPD and the people within it. Even when Batman did appear in the comic, it was often in silhouette, and the creators focused instead on the reaction of the GCPD detectives and officers to him, some appreciative and others resentful. Gotham Central showed not only the benefits to Batman of cultivating an air of mystery by remaining largely in the shadows, but also the way that invisibility can enhance storytelling. It’s common to hear the writing advice “show, don’t tell,” but sometimes the best way to show is not to show at all” (White, 2015).
Although he looks and acts like any other normal man during the day,
but when he goes home at night he fights battles that nobody even knows about.
He’s regarded as a hero by his community
because he continues to fight, despite the dangers, for the better of mankind.
The power of being invisible provided me with the opportunity to live as much of a normal life as much as physically possible.
No one ever suspected that I was sick – Not unless I wanted them to anyway.
I was able to build a career. Be a part of my community. Find both friendship and love.
Still, the most important thing that came out of my invisible superpowers was that
I found out what I really was made of.
That I was both strong and capable.
That I could stand up and fight.
Not everyone may know or even appreciate my super human power and that’s okay.
I don’t expect them to.
This is my invisible fight – and mine alone.
Besides, I could never give up my cape anyways.