It took about ten years from the time I was significantly ill to get my final – correct – diagnosis. I had to go all the way to Bethesda, Maryland, to the National Institutes of Health to accomplish it. During that time, I lost so many friends and family members. They were convinced I was crazy, a hypochondriac, a head case, a mental whackjob…you name it, I was called it behind my back AND to my face!
Even though I was eventually diagnosed with a very rare, and very serious, genetic disorder, that explained every single problem I had ever had, nobody came running back with an apology. Not one person ever looked at me and said, “Hey, Renee, I am so sorry I abandoned you. I’m sorry I did not believe in you and support you. You really DID have something wrong, and I was not there for you.” That does not happen to us. Not in the real world! Disbelief does not become belief and magically become healing.
What does happen is eventually we make new friends, people who know from Day One. There are not as many, but that makes the ones we have extra special. And I try, especially during times like these, to remember to be extra grateful for them. And for that one friend who stuck by my side during all of it.
Because now I am having to relive this nightmare with bureaucracy. Oh yes, the government and Social Security. Fun Times! The first two denials were totally expected, but the third? Honestly, it surprised me. The hardest part? It took me a few days to come to terms with what upset me the most. And it finally hit me. It is the cycle of disbelief.
Nobody believed me for years. Doctors were dismissive. Family members encouraged me to seek counseling. Friends turned away. I doubted my own sanity. Who wouldn’t? And just when I thought all of that was behind me forever? Now I am stuck trying to convince nameless, faceless government employees that a disease they have never heard of is real, and it has a significant impact on my ability to function! It is not just some rare and big, long name made up to try and con them. It is a genuine illness that screws me up on a daily basis. It has robbed me of so much of my life, including my career, and I am physically incapable of working.
And they do not believe me.
This is not a roller coaster I was prepared to ride again.