Open Letter to my Practitioners, From One Chronically Ill Patient Newly Diagnosed with Ehlers-Danlos Syndrome

“This year is one of the weirdest years of my life yet,” 

I  said this casually to my hubs while en route to yet another out of town appointment. There are so many these days now I am all diagnosed, official with Ehlers-Danlos Syndrome. I get lost in the fold, but I am grateful to at least have a solid diagnosis to work from.

This week’s excitement included a horribly “painless” procedure, known as hemorrhoid banding.

Yup, I said it. I’m sharing it.

I have hemorrhoids and I’m unashamed!

For the last 20 years, these awful things created nuisance in my life. Popping out at the most inconvenient times. Scaring me half to death, thinking my intestines were bleeding out the first time one burst. Making me resort to special donut cushions and hemorrhoid creams to cut back on the misery! Pregnancy only made them worse. I learned the graceful art of “tucking” them, but anymore there is no relieving the distress.

No matter what remedy I used, they always returned. Rearing their ugly heads and making my life all the more challenging in managing all the malfunctions associated with this debilitating diagnosis. Yet, one piece of the many making up my Medical Zebra case.

Despite the nature of this procedure, I am pretty excited to get relief. It isn’t painless but I lived through the first round. The nurses were very kind, which always makes me happy as a former nurse with old school nursing values. Even though my gastroenterologist said the banding wouldn’t help at all with my chronic constipation battle, I don’t see how it could hurt! Those jerks are getting BIG!

Enough of that, though! This post doesn’t really have anything more to do with hemorrhoids aside from the inspiration  of seeing the only original member of my medical team that formed during the beginning of my major declines in 2007, almost 10 years ago as I author this post.

Before the procedure began, he came into to ask me how things were going and to ensure I understood the procedure. I appreciate this doctor doesn’t treat me condescendingly, but I often daydream about asking him why he never investigated an Ehlers-Danlos Syndrome diagnosis over the last 8 years of our patient-specialist relationship when it is so crystal clear EDS was the origin of all those problems so many years ago.

What with all the research available on the IBS, Sphincter of Oddi connection to Ehlers-Danlos Syndrome I find it hard to believe he never once suspected something larger at work, but why would he never suggest further follow ups? Why would he not send a note to my primary saying, “Hey, could you please get her checked for this” if it was out of his jurisdiction?

Still, it took another severe decline for him to mention the possibility of a “more global diagnosis” at work. All the while beforehand, telling me there was nothing to concern myself with as he’d corrected my Sphincter of Oddi problem and no other structural problems were identified on my results. Even so, only after I initiated research did I find the tissue issue connection of EDS and all my gut problems. I still was responsible for leading my primary to the diagnosis and getting to a geneticist for my official zebra club badge.

I daydream a lot about what I am going to say to my doctors. I often write up agendas for my appointments because when it comes time to describe my experience I cannot get my words out fast enough. The words jumble off on trails crossing over one another only to lead back to the original point if I’m lucky to recall what it was!. With my cognitive decline, it gets tougher still. I see the processing on my practitioner’s faces, trying to figure out what exactly is her deal.

Over the years, some thought I was obviously depressed. Others asserted stress. The bad ones insisted it was all in my head. Regardless of their opinions, I was always right. There was something wrong. My pain was and is real. My decline wasn’t a product of depression. I mastered my social ineptness into a personality people generally liked to come out of my social awkwardness. I learned mindfulness and the true meaning of life. For once in all my life all the pieces of the puzzle fit together once my Ehlers-Danlos diagnosis came to light.

Even so, the past experiences associated with invalidation through my local healthcare system along with recurrent invalidation from practitioners uneducated on the latest developments with Ehlers-Danlos serves to make this journey weary at times . In my daydreams, I imagine eloquently describing my self-assessments to my physicians as they gather  round enthralled by my knowledge and my case. We work together as  a team towards the goal of getting me the best quality of life despite my disabilities. In melodic harmony, my treatment plan comes together right in line with what the Ehlers-Danlos Society recommends.

The reality is most, if not all, of my physicians, are essentially uninterested in my case. Many are even afraid to touch it. As a former practitioner, I can’t fathom why because cases like mine are the thing TV series like “Mystery Diagnosis” are made of! In fact, here is an episode of mystery diagnosis featuring EDS!

In the TV land of healthcare, doctors are always interested in a case like mine, but in reality…

My daydream is a pipe dream, let’s face it.

No practitioner has time to listen to a 35-year-old newly diagnosed EDSer with an underlying neuro divergence yet afforded the definition of a diagnosis and 5,000 medical complaints. Surprising, I know!

If you know of one, please send them my way!

In the meantime, I present this idealization of what I would say to my doctors if I could articulate it beyond my anxiety and complex PTSD reactions brought on with medical dealings. I know I’m not the only one who goes through this and my hope is sharing will help those who need it in whatever way the fate of the universe wills it ❤

Open Letter Graphic.jpg


Dear Medical Practitioners on my EDS Management Team,
I know you all are busy. I appreciate anytime you take to look at my case. I empathize with the exhaustion common to the practice. It is a miracle you all are able to do what you do!
The long hours, the stress, the pressure, the lack of gratitude makes this field one of the hardest. On behalf of humanity, thank you for giving your life in service to others!
After all, the Hippocratic oath is no joke! It takes a special person to uphold those standards.
Time is ticking just a little quicker in the reality of healthcare, so I will quickly get to the point…
Believe me when I say you will be a better practitioner for taking a few minutes to read this humble letter from a nurse turned a chronic patient in a matter of a short-lived 8-year career. An era brought to a close by the intermingling of an undiagnosed genetic condition and a 300-pound patient landing in my lap.
Practice is full of little lessons, and my hope is others will learn from mine, so here goes:
When you see me, you see a ball of nerves, desperately trying to unravel the whole messy tale of my chronic life so you can understand how I got to this point.
This is no easy challenge when you give me less than 30 seconds to state my complex case.
Inevitably, this destroys our therapeutic rapport. If I can’t even hold your attention for a minute, how can I trust you?
I know my case is a little more time consuming than most. It requires a great deal of problem-solving without much success.
Nothing would make me happier for you to find the magic treatment to erase all my complaints, but if we are being realistic, both of us know this is not expected.
This is why we really need to get better at working together. 
I implore you to take a look at what I prepare for our appointments. I know you see countless “chronics” like me in between our visits. I’m but one of the many charts  on your desk, but did you now I think about you all the time?
Not in a creepy way! What I mean to say is I think of ways to make your job managing my case a little easier.
I have the time, competence and no one knows my case better than me!
Please, let me do you this favor! I promise this will be worth one’s while.
I researched my case only using authoritative sources. I prepared a typed, self-nursing assessment complete with noted patterns, trends and treatment responses. I printed current scholarly articles on efficacious and available treatments for my rare conditions.
See this pretty package? Yup, it is a gift from me to you!
I do all this for you to understand me in the clearest, most concise way possible. I want you to understand my issues without the details being lost with my inability to articulate over the buzz of the fluorescent lights in your office or within the deafening fear of uncaring practitioners in my imagination.
Let’s be real. I don’t want to waste my time any more than you want to waste yours. All I want is to be a part of my own team. I guarantee, taking  an interest in my contributions will improve the outcomes of my complex, difficult to manage case beyond any other action a practitioner could possibly employ.
If you take the time to treat me seriously and sincerely, chances are my faith in your treatment suggestions will be far greater. Listen, consider and care about my humanity if you really want to improve my quality of life from this state of disease. There exists no greater placebo effect than that exerted by a practitioner compassionate to the plight of the patient.
“Listen to your patient, he is telling you the diagnosis”
~Dr. William Osler
Sincerely,
One Chronic Ill Patient Attempting to Take an Active Role in Their HealthCare
Kitten Therapy.jpg
After a long day of hemorrhoid banding, kitten therapy was just what I needed to forget about it! [Image Description: Author of Only in this Head snuggling a pretty calico kitten named Lily. While the author’s eyes are dark and it is obvious she isn’t feeling well, you can see a sparkle in her eye. That sparkle is ktten love.]
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14 thoughts on “Open Letter to my Practitioners, From One Chronically Ill Patient Newly Diagnosed with Ehlers-Danlos Syndrome

  1. Although I know Nothing of your diagnosis or even your symptoms, I can relate to your open letter. Practitioners these days are much more interested in getting through than doing what needs done in order to really help their patients. Or at least this is the conclusion I’ve come to. Even with knowledgeable and involved individuals, it’s difficult.

    Also, I feel it’s important to celebrate with you for your diagnosis, while also empathizing with your struggle and identification as chronically ill.

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    1. I’ve been both a nurse and a patient so I’ve seen it from both sides and it’s truly disheartening.

      While I understand the constraints of time on practitioners, it seems lots of costs and struggle could be saved if only we could be accepted as important members of the team.

      The resistance speaks to the larger problem in the system.
      It makes me sad but it seems the pressures of insurance companies is what drives care beyond all other reason.

      I think this might frustrate a lot of practitioners, perhaps to the point of needing to mentally disassociate from the injustices. Nevertheless, you are absolutely right about the significance of validating the chronically ill experience. If only practitioners took the time to do this we would see a great improvement across many channels!

      Thanks for the comment! I have Ehlers-Danlos Syndrome, POTS, Malabsorption and a wide variety of associated symptoms. If you’d like to read more about my diagnosis journey, please check out my article over on Stomach-vs-Heart: The Art of Survival about how I ended up getting diagnosed after 20 years of symptoms: http://stomach-vs-heart.com/?p=1973

      I hope your day goes exactly how you need it to go! Heading over to check out your blog ❤

      Liked by 1 person

      1. I, too, believe that insurance drives so much when it comes to health and wellness care (mental health included) as more and more practitioners are being ‘forced’ to do as insurance providers desire, which really has NOTHING to do with actual health. It’s more than disheartening, it’s frustrating and stressful, it’s unhelpful, and it’s controlling. Unfortunately, for so many, there almost is no other way. I fear a day or time that I, Hun, or our children get too sick for us to handle something on our own 😦

        Liked by 1 person

      2. We live in uncertain times when it comes to the future of Healthcare for sure. I hold those same fears for me, myself and everyone else because a system that is based on maximizing profits rather than quality of care, that system becomes downright DANGEROUS. Never has there been a time where self advocacy is more crucial.
        I think the internet helps raise awareness and call action to change, so here’s to hoping things will get better and not worse!

        Liked by 1 person

  2. Hi, really pleased to have found you via #SmallVictoriesSunday linkup. I am also an ex nurse disabled from work with EDS and chronic back/pain problems (prob secondary to lifting!). Your open letter rings so many bells with me – I will come back to read some more of your posts tomorrow x

    Liked by 1 person

  3. Hello! Thanks for the comment! #SmallVictoriesSundy is my first link up and I’ve really enjoyed it!
    Sorry to hear you met the same fate in nursing. Finding out too little, too late is a tough experience.
    When I went to the Geneticist she said, “I don’t think Nursing is a good idea for anyone with EDS.”
    LOL, would’ve been nice to know that before it disabled me! Speaks to the greater need for early diagnosis for sure!
    Very nice to meet you! I am going to head over to your blog and check it out!
    Many hearts and spoons to you!

    Like

  4. Wow! What great timing for discovering your post. We are 9 weeks out from our appointment with genetics to {hopefully} get a diagnosis for my 13yo. It has been a terribly long year as we wait {9 months} for that appointment and treat symptoms that arise in the meantime. While I don’t wish any sort of diagnosis on anyone, a diagnosis of any kind would be helpful in tying together all the seemingly unrelated things that are going on with her body.

    We haven’t had quite the struggle you have, but our experience with specialists is that they are trained to deal with one body system. Therefore, they don’t have the mindset to look at “symptom X” as a full-body issue as it potentially relates to EDS.

    Liked by 1 person

    1. Thank you for the comment! I am so happy yo found my blog!

      Getting you child diagnosed early is so important because if you know you can prevent unnecessary complications. Such as my case.

      When my I developed a life threatening post-surgical complication no one knew I had EDS so the surgery my doctor did to correct the damage is now coming apart and contributing to my issues with nutrient malabsorption. If we knew, I might not have quite so many issues today.

      I wish you the best of luck at the geneticist. I lucked out with mine having a unique understanding of EDS as she was also a Zebra albeit lesser disability than I.
      My best advice is to learn everything and don’t be afraid to call out practitioners on poor care and uninformed practices. Unfortunately, the only advocate we can rely on is ourselves because there is so many practitioners ignorant to the widespread effects this disease is capable of producing.

      Please feel free to contact me anytime if I can be of assistance on your journey to genetics. It sounds like you are doing things right. I will be hoping for positive outcomes with the geneticist. ❤

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