SEID The Journey Moves On
Going into year #9 with this. Stop and think - that is about one fifth of my life. Like you all, I MISS LIFE!
When the diagnostic name changed from the always vague and dissing CFS to the more scientific, body-systems encompassing name SEID in February this year, I thought my physicians would be open to read about the summary of symptoms and history. I offered them ONE page summary, not tiny print. Each one politely declined....WHAT? Medical physicians refusing to learn about what is holding the patient hostage from living? One more invalidating, dismissive, insulting act no matter how unintentional it may have been by them. But that is exactly how it feels.
What has happened to the medical field? I was a nurse before I came down with this. When I was assigned a patient, I had all the available online science-based sites to help me brush up on diseases as well as help me understand unfamiliar ones that my patients suffered from. That is how I knew how to steer nursing care towards that patient. But doctors do not have the desire to simply read one page to catch up with my health?
I felt myself spinning downward into the usual path of anger/grief from their rejection of the current updates. But I've been working on myself so that reactions I have to the negativity spewing from anyone else simply causes me to think, but I refuse to walk down the usual cow path to severe depression because of them.
I'm not saying their refusal does not hurt me - it does. I am still human with needs and emotions. However, they will not control how I feel when they CHOOSE ignorance over scientific knowledge. It is their problem, even if their problem may affect any care I do or do not receive.
We're never to old to learn more life skills to help us cope in a dreadful situation. Aloha for now ♥
When the diagnostic name changed from the always vague and dissing CFS to the more scientific, body-systems encompassing name SEID in February this year, I thought my physicians would be open to read about the summary of symptoms and history. I offered them ONE page summary, not tiny print. Each one politely declined....WHAT? Medical physicians refusing to learn about what is holding the patient hostage from living? One more invalidating, dismissive, insulting act no matter how unintentional it may have been by them. But that is exactly how it feels.
What has happened to the medical field? I was a nurse before I came down with this. When I was assigned a patient, I had all the available online science-based sites to help me brush up on diseases as well as help me understand unfamiliar ones that my patients suffered from. That is how I knew how to steer nursing care towards that patient. But doctors do not have the desire to simply read one page to catch up with my health?
I felt myself spinning downward into the usual path of anger/grief from their rejection of the current updates. But I've been working on myself so that reactions I have to the negativity spewing from anyone else simply causes me to think, but I refuse to walk down the usual cow path to severe depression because of them.
I'm not saying their refusal does not hurt me - it does. I am still human with needs and emotions. However, they will not control how I feel when they CHOOSE ignorance over scientific knowledge. It is their problem, even if their problem may affect any care I do or do not receive.
We're never to old to learn more life skills to help us cope in a dreadful situation. Aloha for now ♥
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