Wow! It’s been so long since I last wrote! It has been hectic.
But I’m back! So…
I’m just going to jump right in here…
I work… I’m fortunate to be able to work. I’m lucky I can leave the house to work. So many people in my position, with these illnesses, are unable to leave the house for work, and many of them are unable to work altogether. Don’t even get me started on the SSDI process! – I’ll get to that later.
So I work… I wake up every morning at 4:30 and I’m at work before 6:00. Granted, it’s only a part time job, but it’s work. And I enjoy it! That’s probably all I could really ask for! But working while dealing with two illnesses still comes with its difficulties; even if I’m physically stronger than many of my friends.
You see… A lot of the time I’m a bit embarrassed about my illnesses. I just started my job back in October, so I haven’t been here for very long. Now, I have some decisions to make: tell everyone (probably one by one) about each illness – in detail; keep it all to myself and try to save up sick hours and work all of the extra shifts in case I need time off to go see a doctor or have a procedure done; or I can wait until a day when I’m sitting at work in so much pain that I need to go home and then try to explain with just enough, but not too much detail. It’s impossible. It’s frustrating. It’s embarrassing. I see the same 2 looks, but never from the same person. Look number one: “okay, so you’re not dying? Then get over it. That doesn’t sound that bad. It sounds made up.” Look number two: “Your HEART doesn’t work!? You might pass out!? Oh dear god! Go! Go! Get out! Get better!”
As you might have imagined, both of these looks make me feel absolutely insane and usually right afterwards, I want to (or do) cry.
Now, you might be wondering why I would ever feel embarrassed. Well, first of all, I work at a Rec. Center, so the amount of physical activity I can survive is a little low and at times humiliating. Don’t get me wrong, I still work out and try very hard! Second, and yes this really happened, I have blacked out and smack my head on my desk. This hasn’t happened at my current job, but it did happen at my last office job. It was loud, my face turned red, my head turned purple and I got sent home. It was unbearably humiliating! Last… I have mentioned that I almost always feel pain, so I always have a heating pad with me, including at work. The number of questions and comments I get every day is incredible… “not feeling well?” “did you hurt yourself?” “oh… You cold?” All I ever want to respond with is (in order): never, of course, and always. But this would never go over very well, so my response is always along the lines of “oh yeah… Just chilly!”.
So, riddle me this: a girl has a sickness that is not seen, heard or contagious… How can she get a sick day? The answer: by sharing all of the most intimate details of her life in order to explain the unseen, unheard, and non-viral sickness. What does she risk in doing this? Sometimes nothing. Other times, her pride… Always getting too much sympathy; 20 questions… Explaining what, when, why, how, where and who is not just for 3rd graders anymore!
Please understand, I am so happy that I can work, but man… It’s not easy when you are always tired or sick, or in pain. And everyone has advice, but no one understands.
So why not get disability insurance?
I’ll tell you why… Not only is it ridiculous process, to me, it’s not worth risking my integrity or reputation if I CAN continue to work. I have heard horror stories from my friends about being denied several times, fighting judges who don’t understand because of doctors who don’t seem to care, or just aren’t educated enough to offer an opinion on these illnesses. The last thing I need is a doctor announcing to the government that I’m a crazy whiner!
So that’s how it is. And it’s frustrating, and maddening, and irritating and embarrassing and sometimes confusing. But once again, it’s part of my life… It’s my job, and I love it!
Zebra hugs and love to you all!