Dear chronically fabulous clumps of stardust that read the contents of my heart and mind,
I am one sleepy bunny, much like the one pictured above. The past few days my arms and legs have somehow felt both like spaghetti and like lead. I’m not sure how that works, but it’s happening. I feel so weak and heavy, and all I’ve wanted to do is sleep. This is not the first time I’ve experienced suddenly being filled with lead and being drained of what little energy I already have. In fact, these mysterious episodes have happened several times a month since I was 13.For those of you who don’t know my current age, I’m now 26. That’s a long time to feel this sick.
Among all my illness one disorder I suffer from is Anxiety Disorder, and because of it, I’ve been banned from Googling my illnesses to avoid becoming anxious over my health issues. However, this is frustrating, because the most recent illness I was diagnosed with is Chronic Fatigue Syndrome. When the doctor told me I had it, I was told there was nothing be done, and was left alone. So here I am, scrambling in information purgatory. I’m not allowed to research illnesses myself, but doctors only give me a vague glimpse of my diagnoses and kick me out the door. What’s a sick girl to do?
Well, this sick girl said, “fuck it,” and Googled anyway, anxiety and all.
It’s incredible that I have an entire system of information within my phone and computer, yet I more often then not completely forget about this privilege. As it turns out, this incredible system called the internet (but you’ve probably never heard of it *scoff*) is for more than listening to New Found Glory on YouTube and fawning over pictures of kittens and puppies. I can actually get important information out of these machines! After some research, I discovered that many people who suffer from Chronic Fatigue Syndrome are often floored by the feeling of becoming weak and heavy, their limbs, just as my own, feeling like they have been dipped in concrete.
I also found that many people with Chronic Fatigue feel dazed, as if they are in a constant state of dreaming. Most of my life I have felt this too; I often would describe it as my soul and body being separated. Since I was a child, I felt as if my body remains here on Earth, doing all the human things it is expected to do, while my soul is somewhere in the atmosphere, floating above me. I imagine we are connected by an invisible string of stardust that keeps us tethered to one another, and some days I feel closer to it while other days I feel farther. It is never where it should be though, which is safe inside me, and on the worst days I fear our tether may be cut and my soul will be lost entirely. I explained this to very small amount of people in my life, for fear that most would think I was insane. Only one person in my life ever actually understood this feeling, though we are no longer friends now, which takes me from one person understanding this feeling, to zero.
Last year, I told a counselor this. He suggested because I have PTSD I may have developed some type of dissociative disorder. But now I cannot help but wonder, is this disconnect the work of Chronic Fatigue Syndrome instead? Oh, how the plot is thickening.
The only reason I had gotten tested for Chronic Fatigue to begin with was because I told a doctor that despite my many diagnoses, even with all that I had been labeled with from Celiac Disease to Vasovagal Syncope, there were still symptoms that did not match any illness I knew I had. A simple blood test revealed that Chronic Fatigue was the newest addition to the villains inside me. This was nearly six months ago; but because I now have no insurance and again, have been told not to research on my own for fear of aggravating my anxiety, I’ve been left in the dark, suffering from an illness I’ve unknowingly had for years.
Upon using the magical Googly machine, I have not only discovered that Chronic Fatigue Syndrome is responsible for me being filled with lead/concrete/other heavy materials (why couldn’t it be Adamantium?) and possibly the reason my soul is sailing among the stars rather than spending life with my body like all the cool, healthy souls do, but it is also the reason I have constant joint pain in the places where I have not been diagnosed with arthritis and why my sleep has been off since I was a teenager. If anything, I can at least take comfort in the fact that I am not crazy for feeling and thinking what I have for exactly half my life. Having an explanation for my sickness also means that I am not alone, regardless of how alienating chronic illness feels.
It is especially unfortunate that like most of my illnesses and diseases, Chronic Fatigue Syndrome is yet another illness that people relate more to the Easter Bunny than to a medical condition. People such as myself have to withstand ignorant comments such as “but you can’t be so sick, you’re too young!” or, “but you don’t look sick!” which after ten years have gone from minor annoyances to me thinking, “oh my god I am going to scream like a banshee because you are so irritating, please get the hell away from me and stop talking to me for the rest of forever.” The only thing that makes suffering from constant pain and sickness even worse is being told that others,whether they are strangers or those close to you, don’t believe you.
Sometimes, I wish the associations that work for our diseases and illnesses would focus on curing ignorance and stupidity towards the disabled rather than trying to cure our illnesses themselves. Most of the time, no one has any reason to not believe someone when they say they are sick. So often my own family,despite seeing me taken away in ambulances, collapsing from pain, and tied up in tubes and wires in a hospital bed somehow still believed I was faking or overreacting. Right before I moved away, they went from those thoughts to thinking that I was just insane, and would threaten me with calling cops and throwing me in a mental hospital where I’d “stay forever” because I was sobbing from pain. Clearly a criminal act.
I am not “crazy,” and I am not mentally disturbed because I am physically and somewhat mentally sick. However, I am exhausted and hurting, and I wish more than anything that those who say they care about me would have empathy and belief towards my pain. I wish there was some type of Sci-Fi machine where I could input every illness I’ve been diagnosed with and hook it up to someone’s brain just for a while so that they could truly understand what I feel. Not forever of course, because I don’t think anyone should have to suffer as I and others like me do on a daily basis. But just for a few moments, I wish that those I know could feel what I feel. The flashbacks spinning in and out of my mind, the impossible weight of my limbs, the pain in my jaw hinges, the stabbing, aching in my spine (and those are just a few symptoms). Currently, a machine such as this does not exist. Maybe it will one day in order to inspire empathy and understanding within the human race.
Or maybe I just watch too many movies and play too many video games.
I’m gonna call on somebody, in a cry or plea.
Could be something discovered in reality.
I couldn’t tell ya, it hits us in different ways.
I know we’re young but I feel so old,
Get me the doctor, call me the doctor.
One by one we become undone,
Get me the doctor, call me the doctor.