What about all the pity you seeing people I or even worse the people who think you're faking the game? I assure you, dear friend , that the energy it would take to fake something like this would never work. I hate that. I hate that my body is constantly waging a war against me. Depression? Anxiety? PTSD? Etc. of course these things come along with lupus. If you spent more time at the hospital than you spent at home or doctors were all ways poking you I bet that you would have a bit of depression, a lot of anxiety, and PTSD.
It's very difficult to explain to those people that you would love to get up, get dressed, and go out and do "normal" normal activities each day. But, with lupus there is no normal. One day you might be fine and the next day you wake up to a raging fever and feeling like the exorcist has taken over your body. You lose friends because you are that girl that can't be counted on to go out, party, or be counted upon. People start seeing you in a different light. Some pity you and others just think you're lazy.
I've had to deal with all this. In college I had tons of friends, partied all the time, and never slow down. Once again getting sick my friend pool became smaller and smaller until now it's just a few people. Even those people sometimes ask me, "Are you sure you can do this next month?". I have to tell them that as long as I'm feeling well I'm very sure that I want to do that next month. But, I can never positively tell you I am sure I will be feeling well on a certain day.
So many people post about the physical detriment of lupus. Very few are brave enough to tell about the emotional deficits and the emotional impact that Lucas has upon you. There are reasons why many chronic illness people suffer from depression, anxiety, etc. it's not only because they're constantly sick but people constantly look at you and say things like, "but you don't look sick." Or, "I'd love to lay in bed all day." Though it sounds glamorous, dear readers, I assure you that you would not love to lay in bed all day because you feel like steamroller has squished your body. You wouldn't love the random fevers that come out of the blue and soak your body. You would not love waking up one day to feel fabulous and then the next day to feel so bad that you don't want to eat, drink, or even crack an eye.
Yes, I've lost so many people that were close friends to me because of this disease. What's sad is that I thought they were my best friends. They began calling less and less because I couldn't be "counted on" to go out etc. I Think that is when depression sets and even harder. People avoid you. People forget you. And people just ignore you. They don't want to hear that you're sick "again". I don't even want to say it.
Imagine, if you will, feeling great like you have all the energy in the world and wanting to do everything. You go out you got some tasks done come home, have a great night, and wake up the next morning feeling as if you have the worst flu you've ever had in your life. Are you going to go out with your friends that day? Most likely the answer is no. There was a pole done that showed that most people suffering from lupus downplay their illness for their family and friends because they're so tired of people saying that they are just lazy, avoiding certain tasks, etc.
I assure you that I wish I had the energy I had before. I used to go to college full-time, work a full-time job, and party full-time. I got 2 to 3 hours of sleep and I was still going. But, that will never happen again for me. So, as my pool of friends become smaller and smaller until you have no one to call when you want to cry. I realized that my real friends were online. I may not be able to reach out and hug them. I may not be able to call them whenever I want to. But, I know they have my back.
So, to those few of you that I call a true friend I would like to thank you. You don't realize the impact you have on my life. Thank you for your kindness, your support, your love, and most of all your lack of judging me or something that I cannot control though I would love to do so.
May may be ending but my symptoms won't go away at the end of the month. I still have flash fever, I still have rashes, my immune system will still be fighting me, and I will still be sick. But, at least I still have a matinee. Maybe one day the caterpillar well metamorphoses from her cocoon.
