Recently an acquaintance of mine who has suffered for years from unexplained illness was finally diagnosed. It’s hard to explain to someone who has never suffered from an unexplained illness, but the diagnosis was actually a happy occasion and yet he chose to keep silent. He did not tell most of his other acquaintances or people he interacts with a regular basis, he only chose to tell close friends.
When I heard that this person chose not to broadcast the news I thought it was a little odd, but after some thought I came to understand. When you have an unexplained illness you will be told you are crazy more times then you can count.
Your doctors will call you crazy
The nurses will whisper about you as you walk out of the doctors office
Your pharmacist will challenge the validity of your prescriptions
The news will mock people like you
Your acquaintances will think you’re nuts
You will lose friends who think you’re just trying to get attention
Even your loved ones will question you and think you’re just being lazy
The longer this goes on the more you start to believe that just maybe you are crazy. You begin to doubt even yourself. Maybe there is something wrong with you? Maybe you are mentally imbalanced and you just don’t know it? Everyone you know is convinced that you are certifiable, so maybe you actually are?
And then after years of losing friends and loved ones and thinking that you might actually deserve to be called all the things they are calling you, it turns out you aren’t crazy. You have a diagnosis, so now what to you do? Do you wave your diagnosis in the air showing to all the world that they are imbeciles? Do you wait for the long line of apologetic acquaintances to make their way back into your good graces? Or do you hold tight to the people who stuck by you no matter what and believed you through thick and thin? There are no easy answers, but I chose to hold tight to the people who believed from the very beginning.
The worst thing you can do to someone with chronic illness is make them prove to you that they are sick. For me the most important people in my life are those who have believed me from the beginning. Those who know me and who I am and have stuck by me in thick and thin. The most significant, powerful, essential words I have ever heard were and are, “I believe you.”
Love this post. It mirrors my experience. But I'm not crazy or lazy or faking it to get attention etc, etc! Once you get a diagnosis you can actually begin to deal with finding what works for you.
So true. Getting a diagnosis, even if it's a bad one, at least gives you a starting point.
I agree with mabeane. It actually helped me move on to the next phase. I told my family but mostly they did not want to know or thought that getting a diagnosis meant I could now get a pill that fixed everything
I completly relate! It's really hard for people to understand that there isn't a magic pill to make things go away like it's portrayed in medication commercials.
I think another factor is something akin to why newly pregnant women don't share the news right away. There's always that risk of "what if the dx was wrong?" What if I tell everyone I have X only to find out that I don't and I'm right back where I started.
Good point, I hadn't thought about that. It's hard enough to go back to the beginning, but even harder if you have to tell other people.
I hope your health is good.
Keep posting Cronic Mom.
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