Having gone through the early stages of my Parkinson's diagnosis, I've left behind the challenging period known as the diagnostic journey.
The diagnostic journey, or medical odyssey, refers to the process of seeking a diagnosis for a particular condition, but not yet knowing what it might be. It's a time when:
You meet with numerous specialists
You undergo many tests
You often have to take time off from your obligations
It disrupts family balance
It affects mental health stability
Most importantly, it can last a long time!
Here are my tips for navigating the diagnostic journey
based on my personal experience
Be kind to yourself! Take care of yourself. Take time for what's important to you. You won't go through many diagnostic journeys in your life. Be gentle with yourself. Take days off, treat yourself to flowers, do what you love.
Avoid reading blogs, articles about all possible diagnoses. Avoid watching videos on the subject. Instead, take note of all your concerns and questions. During appointments with specialists, give yourself permission to take your time to ask all your questions.
When the answers seem vague and unsatisfactory, allow yourself to rephrase your questions to get clear answers.
"With your response, I understand that it's not currently possible to confirm my diagnosis, but what is your main hypothesis? And what is your secondary hypothesis? What makes you doubt?"
Be accompanied to all appointments during the diagnostic journey: stress can make you forget what specialists say and advise.
Be aware of what all this is making you experience, and try to relieve stress before it overwhelms you (exercise, sing, etc.).
Consult a psychologist or healthcare professional to accompany you.
Work on your tolerance of uncertainty: "If tomorrow I get hit by a vehicle and die, will the time I spent worrying today seem well spent at that moment? What would make more sense for me to do or think?"
Remember that you are not alone!
This period is temporary, and although the diagnosis may be frightening, the future is often not as bad as we anticipate.
Best of luck,
Psychopine
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