I've gotten a lot of negative reactions -- fear and confusion mostly -- from certain people about "coming out" -- by which I mean publicly talking about my chronic illness.
The thinking goes: If you tell people you are ill, they will treat you differently. You will be locked out of certain jobs, activities, etc. because people will know that you have these limitations. You are giving up privacy, people will judge you.
Unfortunately, it's too late for those concerns. My symptoms are so severe that it's obvious to anyone who spends any time with me, that something isn't right.
I haven't been able to work a steady job in years. I miss appointments. I sometimes have flare-up so severe that I am desperate and begging for painkillers. I cancel activities at the last minute because I have to stay in bed. I am clear and intelligent one minute, then spacey and forgetful. Sometimes I sleep all day, not even waking to answer the phone.
Do you know what that looks like, to someone who doesn't know that I have FMS? It looks like a drug addict.
I decided to tell everyone that I have FMS, and explain the details of my struggle, because that's better than the alternative: being thought to be an addict who screwed up her promising future.
I had a really humiliating moment a few months ago that made this really obvious. I had to go to the hospital for an IV. Murphy's Law: I have really difficult-to-find veins. The first tech stuck me in one arm -- ouch -- missed -- then the other arm. Missed again! She called out her supervisor, who jabbed me again in the first arm -- missed! Second time in the second arm -- dug it around a little trying to get the needle to feel around in my arm for a vein -- nothing. I started to feel like a voodoo doll, getting jabbed by needles repeatedly. Then, finally, the Keystone Medics inserted a huge needle and IV into a vein on the back of my hand.
An hour later, I was out of the hospital and wandering home. Suddenly, the events caught up with me, and I needed to use the bathroom. I ran to the nearest coffeeshop and asked for the keys to the restroom.
The lady behind the counter was in the act of handing me the keys, when she stopped. Took a look at my arms, bandaged and bruised at the veins. Even the back of my hand was irritated.
Her grip on the keys tightened suddenly and she stopped.
Great, she thinks I'm a heroin addict. And I have to go really bad. Wetting my pants -- that would prove I'm an out of control drug addict, wouldn't it?!
"I was at the hospital," I say, smiling, trying to look trustworthy.
Wait! No, that didn't help. Now she thinks I have some communicable disease that I will spread all over her coffeeshop! How long will it take to explain FMS? Will she believe me?
Sorry lady, here comes the lie. "I gave blood," I say. "The techs did not do a very good job."
She hands me the keys, says nothing.
On the way out of the coffeeshop, I stop and buy a very expensive mocha drink, that I will probably throw away on the way home. To reward the counterlady for letting me use the bathroom. Or maybe to prove to her that I'm not a homeless heroin addict.
So, given my choices -- people can think I'm a drug addict, or lazy -- I'd rather take my chances with them knowing that I have FMS.
Dear World -- I'm sorry, but I'm dealing with a major illness and I just can't live a "normal" life like most people. I can't make plans far in advance or keep up with everyone else's energy level. I don't want to disappoint you or let you down when you find out that I can't keep up. If you can understand some of my limitations, I'll do my best within my powers. Thanks for understanding. -- Miss C. Fabulous
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