Rare Disease Report

Doctor Can You Hear Me? Doctor Can You Feel Me?

APRIL 14, 2017
Erik Fisher, Ph.D. aka Dr. E...
All too often in the lives of those who have been diagnosed with Syringomyelia and those who will be diagnosed with Syringomyelia, there is a common theme in the diagnostic process. That theme involves not feeling heard by those around them. While the person experiencing the disease is often left feeling unheard and even invisible; caretakers and family members may experience those feelings as well.
In many a medical model, the Healthcare Professionals (HCPs) are incentivized to make visits shorter, and they feel that they have to make rapid decisions to move on to the next patient. In that process, unless and even when someone comes in with their prepared list of symptoms and issues, a few things can happen:
  1. The Healthcare Professional may not take the time to listen to all that is being said
  2. The patient/parent may not present their case in a manner in which connections may be made to the syndrome
  3. The HCP may not have experience and/or exposure to the disease
  4. The HCP does not want to consider the diagnosis, because it is “rare” and they will find reasons why it’s not that
  5. The HCP may even dismiss the patient from their practice, because they don’t want the potential liability, and then the patient may feel afraid to be honest about their symptoms.

Stress Can Augment the Problem

In many of these situations, the patient often continues to go undiagnosed; fear, helplessness and anxiety often increase; and trust in the healthcare system may be compromised or lost. As the emotions mount, anger may be the result, and when expressed toward the HCP, the outcome can be even more negative, as the HCP may look back to the individual as their emotions and reactions being the problem… once again, not hearing the bigger issue. With Syringomyelia, time is of the essence with diagnosis, and the symptoms that are indicative of the various manifestations can be so varied and numerous that the feeling of overwhelm can feel as great as the symptoms that accompany the disease.
How can people manage the emotions and the symptoms? Distress, especially prolonged, is not a good thing for the body by itself, and when there are other physical issues going on, it can complicate matters further. Furthermore, sometimes symptoms of Syringomyelia can be confused as symptoms of stress, anxiety, depression and/or other psychological issues. This can only cloud and prolong the diagnostic process and distract from finding solutions.

Treating the Stress (and the Stressors)

Even in the process of finding a diagnosis, getting some therapy can be a good thing. Here are some issues to be aware of:

  1. Be able to distinguish your physical symptoms from your stress. It is important to know your body and your mind.
  2. Recognize that in the process of searching for answers, searching for advice can be a good thing. In the event that you seek out or are referred to a mental health professional, they will often take more time to listen and may be able to help you advocate for yourself with your medical staff.
  3. Be able to report your history of physical and emotional challenges and view a Mental Health Professional as an asset, not as someone else to dismiss or judge your situation. Finding people you can talk to about what you are going through, whether you are the patient or the caretaker, is important, and finding people who you feel understand you is critical.
  4. Unfortunately, in some people’s search for answers and perceived relief from their problems, they may seek the permanent solution of suicide. This is never an option. Always reach out to others who can help when you feel this way. 
  5. When it comes to HCP of any kind, do some research and find out who you are seeing before you see them. And always know that there ARE people out there who do care and are good at what they do. YOU and your family deserve the best care.
Dr. Erik Fisher is a Psychologist, Author and Media Consultant, who works with a variety of populations. He also serves on the medical advisory board of Worldwide Syringomyelia & Chiari Task Force.  www.wstfcure.org  For more information on Dr. E…, feel free to explore www.DrEPresents.com

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