Serene Forest

Tuesday, February 11, 2020

Family Dynamics and Periodic Paralysis: An overview

Family Dynamics and Periodic Paralysis: An overview

I have a family with many members who do not believe that I have a rare, hereditary, mineral metabolic disorder called Periodic Paralysis. They believe I am faking and making it up. I am severely affected by the disease and it has reduced the quality of my life, however I am more affected by having doubting family members who should be there to provide help and support to and for me. There is a huge division in my family, between the believers and the nonbelievers. I am in contact with many people who also have Periodic Paralysis whose family is much like mine.

Periodic Paralysis is a cruel disease. It is one that is difficult to diagnose, though it does not need to be. Doctors, for the most part, who do not understand it, look at patients with it as hypochondriacs, malingerers or faking it. If the doctors treat us that way, is it any wonder our families may feel the same?

Some family members stay away or are very limited in their interaction with you, because they cannot face watching your decline. They may feel helpless. Some just do not know what to do or say. Some do not care or are in denial.

Others may not understand, for whatever reason. They may not have read about it. They may misunderstand. They may be stubborn about issues such as hereditary. They may not want to know. They may not care.

Many family members are living in fear that it may begin to manifest in themselves or their children. Others actually have the symptoms but are afraid to face them. They will have to sooner or later. I will be there for them or my website with all the information they may need.

I thought perhaps when I finally got my diagnosis that I had become vindicated and validated to my family. I thought they would believe me and thank me. Except for a few members who already believed me and supported me, I was wrong. The silence remains disheartening and deafening.

The way I handle it is to provide as much information as I can to them. I have the papers with my diagnosis and am happy to share them with those that are trying to get diagnosed. I have developed a website for them and others to refer to as they have questions. I have also written four books about it mainly for them. I try to maintain communication with them, however strained it may be. I am here for them and let them know. Beyond that, I can do no more.

The loss of our families seems to be another cruel reality of Periodic Paralysis, and as one of my brothers says, “It’s just that simple!!”

(This was taken directly from my book Living With Periodic Paralysis: The Mystery Unraveled)

Until later.......

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