Welcome to Redefining Myself!

My inward journey to living a mindful and quality life

while living with NP-SLE, RRMS and CIDP

and their overlapping accessories.

Slapping the face of many things demyelinating.

Monday, July 29, 2013

Chronically Ill People Need Validation

Do you remember what it was like to go undiagnosed, from doctor to doctor, while your quality of life trickled away? Being dismissed by doctors was one thing, but being dismissed by your family and friends was the absolute worst feeling of abandonment. 

Then the diagnosis finally comes, you are vindicated, you get placed on medications. The people in your life think that the diagnosis will be the cure to your complaints and that your quality of life will return! 

Well, the disease that you have decides that it has other plans for your body and instead of stabilizing, it takes you south. You get worse. 

Your loved one's do not understand that the journey of failing health coupled by being dismissed by doctors is extremely traumatizing and life altering! We also struggle to maintain some normalcy in our lives with our undiagnosed failing health. Some of us will get worse over time and that can cause even more misunderstanding from our loved one's. 

Our loved one's need to be willing to understand that not only are we traumatized by the multiple experiences of being dismissed by most of mankind with our undiagnosed illnesses, but that we are also forced into grieving our lost health, our mobility, our cognitive function and our old lives. 

Most loved one's do not understand that we have been traumatized by all of these experiences and events. That failing health has also traumatized us as well and that it continues to traumatize us as well. That being chronically ill forces us into living the grief process.
That being chronically ill keeps us in the continuum of the grief process. There is no closure with this grief process, because the very nature of a chronic illness is just that: chronic, ongoing, without end. That when we find a new level of daily functioning, sometimes out illness throws us a curve ball and that we have a whole new set of things to process and adapt to. That we sometimes feel like our bodies have been hijacked by illness.

If we have periods of bitchiness (i.e. grief process of anger) that we are struggling to adapt... yet again... That we are struggling with feeling defeated... yet again. We only ask you to be understanding with our process of adjusting to our new set of health complications and yet more limitations; and for you to NOT tell us how to process our new set of limitations, but to just allow us our own emotional and mental journeys of processing a new set of health problems and the impact that these new problems are having on our minds, bodies and lives. Please understand that chronic illness is life altering and that we did not ask for these illnesses and that we are struggling to adapt our minds and lives to the continuum of chronic ill health. 

Chronically ill people need validation (not pity, not babying), and simple gestures of understanding from our loved one's. Gestures of emotional support will not only help strengthen us inwardly but also provide us with the necessary foundation of inner strength and peace of mind that WE need to battle yet another obstacle.


#SickChickPMA #CNSGrrrl