If you’re reading this, you have something to be lucky for. You’re lucky you have access to a computer and the Internet and you’re not a starving child in Africa. I’m lucky I have a house to live in, food to eat, and am not dying of cancer. One thing I’m not lucky to have: my handicapped placard. Yet that is what one of my closest friends said to me a few months back. Let’s back up and I’ll explain.
Both my friend and I attend a local community college with limited parking spots. We were both arriving for a student government meeting and my friend had to park a few parking lots away and take a little trek to get to the school. I know this is not an easy walk as I have had to make it on many occasions when handicapped parking had filled up or I was in the process of getting my placard renewed and did not want to park illegally. However, this was not the case that day, so I easily pulled in to a great parking spot near the stairs. My friend and I happened to arrive at the stairs at the same time, and as she was breathing a little harder than usual thoughtlessly said, “Wow, you’re lucky to have that handicap placard!” At this exclamation I stopped walking for a moment and lagged behind as I silently turned into the Incredible Hulk on the inside. Once I got control of myself, I jogged a few steps to catch up to her planning to jokingly mention how the parking space may be nice, but the disease that comes with it sure isn’t. By this point, however, I had missed my chance. She had started talking to another friend that I didn’t know about an assignment for a class they shared. So I let it go. Until now.
Now I know it may seem unhealthy to hold on to this anger for so long, but the thing is, I think she genuinely meant that comment. As in, I don’t think she recognizes I struggle daily with an incurable illness that requires me to count my spoons and stay on top of my medication. And that hurts. Then again, I am excellent at hiding the true effects my illness has on me, though I make sure to talk about it from time to time so my close friends don’t forget about it altogether.
You see, I was a child actor. Yes the kind in LA with plenty of stigma attached to it (which I hope we can all discount since the stigmas attached to being sick are often ridiculous as well). I mention this because I think it’s of note that I have spent a good portion of my life being trained in faking an emotion or a facial expression. I have spent years being taught, essentially, how to become another person when needed. This has come in handy too many times to count throughout my life and career, but never more than when I need to pretend to be well (which is anytime anyone except my family is present). I’ve perfected the art of acting like a healthy person so well, I think people don’t believe me when I tell them the truth.
Several months ago a fellow blogger and I attended a lifestyle blogging conference that I really enjoyed. However, when a group would get together and ask each other what they blogged about, most answers would be fashion, or make up, or maybe something more serious like self-love. The groups would normally ooh and ah at everyone’s topics and discuss them for a minute or two. But when it got to me, and I said I blog about chronic pain, I got a way different response.
Get inspired: Champion YOUR Chronic Pain
At first people would look a little surprised (which I couldn’t blame them for; I was following the girl who blogs about cupcakes after all) and then they would get a sort of blank look on their face. Last, they would scrunch up their nose and say, “Well that’s not very fun…” and then hurriedly move on to the next person. And this was not an isolated incident! Five, yes FIVE, people said that to me. And then there were the variations like, “Oh, I’m sorry honey.” I appreciated the sentiment, but I did not appreciate the immediate change of subject that followed. One woman even said to me, “Wow. Well, that’s morbid” and then walked off looking disgusted!
Throughout the day, I just smiled and made jokes and laughed it off. But you know what I was thinking the whole time? They are all absolutely right. Chronic pain is NOT very fun. It’s not fun to deal with, it’s not particularly pleasant to talk about, and most of the time it is difficult to write about. What these women failed failed to realize as they quickly dismissed my often harrowing topic, was that even though it’s not fun, it’s something that needs to be discussed. Because I HAVE to deal with it, I HAVE to talk about it, and it’s important to write about! Over 100 million Americans suffer from chronic pain, but because no one ever wants to talk about it, chraintims* like me get ignored and forgotten!
*This image and article (although written by me) belongs to The Glitter Diaries. Check out this article on their amazing site here.
At first glance, this article title may seem a little ridiculous. How can I tell you not to worry about what’s going on in your life? I don’t know what’s happening with you or your family right now. You could be suffering through the hardest time in your entire life. However, no matter what the situation, it’s never healthy to worry excessively. All that will get you is anxiety and high blood pressure.
If you are going through a time in your life when you see no light at the end of the tunnel; if you are in a constant state of apprehension and distress about your situation: sit back and (at least try to) relax, and read this article about why you should worry a little less.
*Reminder: I created the word chraintim, which is a combination of the words in the phrase “chronic pain victim”.
Many of you are probably familiar with the saying “Alone, but not lonely”. There are definitely times that you can be all by yourself, but not necessarily long for companionship or understanding. Sometimes we all need a little alone time. But I’d like you to take a moment and imagine months or even years without these privileges. Imagine spending almost all of your time in chronic pain, sleeping and alone. Imagine being in my specific shoes: graduating high school early, being surrounded by people who are not only years older, but also couldn’t possibly understand the kind of stress your body is under. A little different than having some “me” time, isn’t it?
If there is one thing all chraintims understand that other people simply don’t, it is how alone pain can make you feel. Your family members and friends, no matter how much they go through with you, just couldn’t possibly understand what it’s like to live your life. And this is very difficult to come to terms with. This has been especially hard for me to cope with since there are not many 15 to 20 year-olds who deal with debilitating pain. Up until I started blogging a few months ago, it never even crossed my mind that there were other chraintims out there who would understand how I feel. It seems ridiculous now, but I felt so isolated and so alone I completely forgot that I’m not the first, and I definitely won’t be the last, person to deal with chronic pain.
I’m the first one to admit that I’m fat. I’m definitely not in shape, I’ve got flab, and according to the BMI scale I’m morbidly obese. Some people might see me and think, “Wow, that girl is so lazy. She needs to stop eating all that junk and work out”. To those people I’d like to say: FUCK YOU! Those people have no idea what’s going on in my life or the hell I have been through. Why should they get to judge me based on my weight? My 100 pound weight gain was not something I chose, it was forced upon me. I’ve had to put my life on hold due to chronic pain for five long years and have come out of it with awards, a degree, and a future. So here’s what some people may want to consider before bashing the overweight:
1. You have no idea what’s going on in their lives. Pain zaps all of your energy and slows down your metabolism. The loads of medication I’m on also slows down my metabolism and makes my heart beat crazy heart when I exercise. I’d love to see you run on a treadmill in excruciating pain with your heart beating so hard you feel like you’re going to have a heart attack. I can assure you, it’s not a pleasant experience.
Other things that could be going on in fat people’s lives you don’t know about: taking care of small children and working all the time prevent them from exercising regularly, dealing with a thyroid disease that makes it nearly impossible to lose weight, recent tragedy has zapped their motivation, they are happy the way they are! (more…)
We all (obviously) know there are an unlimited amount of movies in nearly an unlimited amount of genres. Viewers like variety. Viewers like to relate to the characters we see on the silver screen. And that makes sense. Not everyone wants to see a gorgeous nerdy girl get the guy all the time because that just doesn’t happen. On that note, no one wants to see a chubby man with glasses try to kill a foreign dictator in every movie either (also doesn’t happen, but I think this has more to do with people’s taste in movies). I just want to make it clear that I understand that sometimes we need to see a horribly tragic movie or listen to screamo music. All I’m saying, is I think listening to a little sugar pop and watching a happy ending will undoubtedly leave you happier and your soul feeling more fulfilled. Here’s why:
1. MY MOTHER TOLD ME SO. And really, when has your mother ever been wrong? I have never liked watching horror movies. Growing up my friends would watch them at sleepovers and I would just end up watching something with headphones on my phone, with a large pillow in front of my face. Some of my friends did not like this. When I confided in my mother about my dilemma, she told me that horror movies are bad for your soul. “Never feel like you have to fill your soul with darkness and gore,” she would say. “Life’s short. Fill it with laughter and happiness instead”. Come on, you all know that’s solid advice. (more…)
People all over the world make all kinds of resolutions every time a new year rolls around. Most have to do with health and fitness, some with relationships, and a few are about work. What almost all new year resolutions have in common is they are a vow to DO something, which can be pretty damn hard. Actually doing what you say you will is rare and why we value people who are dependable. So this year instead of promising to do something that I won’t actually accomplish, I’m going to tell you what I’m NOT going to do. (more…)
People with chronic pain know it’s not always easy to go to sleep on command. You sleep when your medicine makes you tired and the rest of the time you’re pretty much SOL. Basically, this means chraintims (my abbreviation for chronic pain victims, pronounced CRANE-TIMS) are awake at night, alone, often. Obviously we have to do something to fill that time, although we mostly keep busy to distract us from the pain. Yeah we watch TV and play games on our phones, but sometimes we can’t sleep for hours. So I thought maybe, somewhere, someone might find the weird things I do at night interesting/funny in a weird way, not a haha way.
The first thing I do is watch YouTube videos. I mostly go for parodies of famous music videos because they are entertaining and funny. However, I recently discovered Philip DeFranco and he is hilarious and has amazing common sense that I feel is severely lacking in the world. It is basically pop culture and hard-hitting news all delivered in an entertaining package. Best part? He posts videos Monday through Thursday, so there is almost always a new video to watch! I highly recommend him the next time any of you can’t sleep. Or, you know, the next time you find yourself awake. Here is a link to one of his latest videos: https://www.youtube.com/watch?v=8-1LOSYXnW4&list=UUlFSU9_bUb4Rc6OYfTt5SPw
Our most recent family photo.
Having chronic pain changes you in ways other people can’t imagine. It changes your personality, your body, and maybe most importantly, your relationships with the people you love. Most people don’t understand how a family member being in pain could challenge the very foundation of their connection with you. However, I guarantee you it does.
If you think about it, it makes sense that a person’s personality doing a complete 180 would change the way their family relates to them because family members will obviously behave differently with a completely different person. I’ll use me as an example. Before my original surgery that caused all of my pain I was a straight A, incredibly driven, community involved, family oriented person. Each of those traits were slowly stolen from me throughout the years. The first thing to go was my drive. It turns out when you’re tired, depressed and in pain you don’t really feel like doing much. But it’s more than just that. I found myself having genuinely no interest in doing school work or anything that required effort for that matter. So I didn’t do the school work, or not until the last minute anyway. This, of course, effected my grades which then stole my identity as a straight A student. (more…)