The Blessing and Curse of A Medical Diagnosis

Disclaimer: No statements in this post are meant to represent medical advice. 

If you are in Paris, France and you want to go to a fashion show in Milan, Italy it sure helps if you know your starting location! 

You can properly prepare with the right amount of fuel, food, navigation, daylight, rest stops, strategy, sleeping arrangements and everything in between. 

The result is potentially less time, energy, and money required to arrive at your destination + more opportunity to ENJOY the ride allowing you to take in the scenery and potential shenanigans! 

It seems when there is a plan, strategy or a roadmap it allows for less stress and more joy along the journey. 

If you have a specific type of carcinoma that is extremely helpful to know so that the treatment can be targeted for that flavor of cancer. 

This feels very helpful and supportive and can potentially offer ease and hope for an individual as it provides a blueprint or roadmap of sorts. 

When faced with any situation, especially when it has to do with your well being, it truly helps to know what all the options are. I believe informed consumers make the best decisions for their well being. 

Herein lies the blessing of a medical diagnosis. It may provide clarity on an option you wish to explore or not. 

Here's the rub or curse or other side of the coin when it comes to a medical diagnosis.  

A diagnosis has the potential to place an individual into a category or box that can be limiting in nature.  For example, all people who fall into this category can expect this result. 

Of course there are many known factors, but there are also unknown factors that can’t necessarily be quantified or measured that go a LONG way towards supporting one’s recovery or healing and may be overlooked or dismissed in a traditional medical setting. 

I have seen this play out in my own experience. I have something called Cervical Dystonia. 

A rare neurological disorder that causes involuntary muscle activation of the neck and shoulder muscles that cause abnormal movements, postures or both. Movements are patterned and have a twisting component. While the manifestations of this condition have similarities no two people present the exact same way. This makes it fairly difficult to both diagnose and treat. 

What this means in English is that an individual’s head and neck can move without their conscious control or desire and a person’s head 🗣️ posture can become fixed in a tilted position to either side or the front or back and since the muscles are constantly squeezing/contracting it feels like a charlie horse around the neck. This can last from several seconds to months on end. 

Prior to being diagnosed with Cervical Dystonia my head was turning, almost drifting to the left without my conscious control or intent. Then I started to notice when I would tilt my head back to drink my coffee, my head would go off track. After a few weeks of this I decided to see my doctor. 

My doctor referred me to a neurologist who listened to the history of my symptoms and did a physical exam and told me very nonchalantly that I had Cervical Dystonia and that there is no cure, and Botulinum Toxin is the only FDA approved treatment. 

Having no idea what this condition was, I made the mistake of Googling it. 

All I could remember was, you will be depressed, anxious, and eventually disabled! 

I was devastated for a moment and shortly thereafter decided NOT on my watch. No one or thing gets to dictate my well being! 

I went back to this doctor to receive my first round of Botulinum Toxin A injections and was so excited to start treatment in hopes to relieve the pain and tension I felt 24-7 in my neck and shoulders. My excitement about starting Physical Therapy was instantly shot down by my doctor who immediately replied, “that won't help you”. 

I was completely devastated. Why would a provider ever tell a patient that something that they wanted to try wouldn't help? 

Approximately 3 appointments later, I was receiving my quarterly Botulinum Toxin injections into my neck by this doctor and I broke down in tears from the extreme exhaustion and pain I was overwhelmed by. He never stopped to ask me how I was doing. 

I never saw him again and that is when I understood the importance of my faith and belief in what helps me and that seeing a provider who doubted my ability to thrive was not a good match for me. I am eternally grateful for the provider I see now, she is part of the reason I am doing so well and also why I literally look like a different person. 

What I know for certain is that an individual's belief in what’s possible, no matter what the current situation looks like, is crucial to how things will unfold. 

I believe there is space for both and when it comes to all things in life. I believe a diagnosis can be both a curse and a blessing, it’s all a matter of how you slice it. 

Having a diagnosis helped steer me in the direction I needed to go for treatments and also showed me where I needed to shore up my belief in my own capacity to be well. 

The desire to be well and being curious is what has allowed me to break free from the debilitating neck pain and abnormal posture from Cervical Dystonia that kept me from being able to drive several years ago. 

There is space for all possible outcomes anytime we are faced with a diagnosis and the potential has much to do with an individual's belief about their capacity to be well as well as the influence they place in their provider’s hands about their treatment and/or prognosis.  

Based on my own experience with Dystonia, I was not surprised to learn about the research shared by cancer researcher, Dr. Kelly A. Turner in her NY Times bestselling book, “Radical Remission” who proved 7 of the 9 key factors radical remission survivors of cancer share has NOTHING to do with a specific treatment, rather changing your thoughts.

How often is this type of information shared with patients? How many providers believe in their patient’s ability to heal? How much influence does that have on their outcomes?

I see every single situation life provides as an opportunity to further explore one’s choices and to evaluate the meaning and value they apply to it. 

As a nurse and an individual with a rare condition, I want to plant seeds of hope and possibility for individuals navigating any kind of diagnosis. 

The human tendency is to focus on what’s wrong or how bad the problems are and to doubt what is possible. I did it myself! In my experience, having evidence of what’s possible is extremely uplifting and powerful to have handy, especially when navigating a medical diagnosis or any kind of health situation. 

When we peel back the layers of what drives our choices, often there are things we are doing, paying attention to or believing in that contribute to how these life altering situations turn out. 

The most potent being the real estate between our ears and the thoughts we play on repeat, both consciously and unconsciously. 

Thoughts are energetic and interact with every cell. In his book, "The Biology of Belief", research scientist Bruce H. Lipton, Ph.D shares how DNA is controlled by signals from outside the cell, including the energetic messages emanating from our positive and negative thoughts. This research shows that our bodies can be changed as we retrain our thinking. 

Speaking of beliefs, prior to Roger Bannister running a sub 4 minute mile no one believed that it was humanly possible to run a mile in under 4 minutes. His time of 3 minutes 59.4 seconds broke the world record of 4 minutes 1.3 seconds on May 6, 1954. Soon after Bannister proved it was possible others began to follow suit. Ironically Roger was a neurologist and died in 2018 at the age of 88. I wonder what he would have to say about Cervical Dystonia?!

Why should we place limits on what’s possible for ourselves? Why don’t more people believe in miracles more often? 

I have a miracle consciousness and that serves me extremely well! I have come to expect miracles, both big and small and everything in between. Have you ever stopped to consider how many micro miracles are required for an egg and sperm to get together at just the right time? For a fetus to grow to full term, be delivered, and to be sustained on the mother’s bodily fluids? That one example is why I have a miracle consciousness. It’s evidence that miracles are not only possible, and they happen often! 

Wherever this post finds you, may you know that you have the blueprint for vitality and what you think about that idea matters a lot in how your health will manifest in the moments, days, months, and years ahead. 

If you are reading this and find yourself in a position to break free from the noose around your neck I have 2 opportunities to support your efforts! 

 #1 Soothe Your Cervical Dystonia Starter Kit. A downloadable tool to assess the impact Cervical Dystonia has on your life and simple tools to support your journey. 

#2  FREE 5 DAY CERVICAL DYSTONIA RESET CHALLENGE 🤯. A safe, super fun experience all in the comfort and privacy of your own home 🏡where you will be surrounded by high vibe humans who know what it's like to have Cervical Dystonia and are looking to feel better now!  Reserve your spot  today, the magic goes down December 4-8th and it's FREE! 

I would be delighted to hear how this information lands for you. You can connect with me here to share your story. 

In gratitude and grace,

Lisbeth