Missing Since: 2016
Location: Dallas, Texas
“21 years old. The age of fun and freedom as an adult right? Not if you have ME.
Wake up. 10 hours of sleep. Not rested. Breakfast in bed. Every meal in bed actually. Maybe shower if I have the energy. Tired from shower. Back to bed. Wish I could call my friends but too tired from shower. Looks for movie to watch. Seen them all. Too much focus to read so no reading today. Mom comes in to talk about making decisions and talk about you about leaving room. Headache because you had a conversation with her. Leaves room. Too much mental stimulation from being around noise and siblings and surroundings. Back to room. Lonely. Try to find something to do. Everything requires movement and focus. Constantly lying telling people you are happy to be alive. People telling you that you look fine. Brother sends you a message laughing about a memory. You can’t remember because of all the brain fog. Say goodbye to brother. Cry. Cry some more. Dinner time. Hard to tell passage of time actually. Eat. Ready for bed. Lay down in bed but body doesn’t know the difference. Tired everything…except mind. Toss and turn in bed for hours wondering how many other 21 year olds live with their parents for reasons out of their control. Dreams about someday doing everything I used to do. Grocery store shopping. Movie theaters. Driving my car. Going to school. You know, just normal life. Dreams of having a normal life someday again. Hours later, finally asleep.
Wake up. 10 hours of sleep. Not rested. Another day with ME begins.
For a while I thought I was going crazy. I hesitated to publish anything online because for a while I was desperately documenting my personal struggle with what I thought was a myriad of mental illness. Imagine being told “nothing is wrong with you” for months when you are physically unable to do nearly anything. It’s enough to drive a person crazy if you ask me. No one I reached out to seemed to be able to help. I had been blogging frequently of my struggles with anxiety and depression and trying to allow a way for my friends from all the places I had lived to stay updated with me and my sudden illness. But even that was exhausting. With every increase in anxiety I was told that my anxiety was the reason for my physical weakness which placed the burden back to me. I was exhausted mental, physically, spiritually….literally every sense of the word. I thought I must be sick because it is my own fault. I am too anxious. I am too weak. I am sick. I am the sickness.
6 months ago, I had to drop out of college with only one year left before I graduated. I literally went from picking Master’s Program’s to being bedridden in a week’s time. It took four months of people telling me that I “probably just had a virus” and “just rest and stay hydrated”, chalking my extreme fatigue up to an unfortunate bout of mono. With no change, no help from doctors other than speculation that general fatigue can last up to a year, my family set off an explanation as to why I wasn’t getting better.
Long story short, after about 5 months, my mother and grandmother had inspired run-ins with people in our community that led to our involvement with this organization and led us to further research. That being said, the past 6+ months have been my own personal hell. I don’t say that to complain, but as an accurate description of the lonely and relentless nature of this disease and the lack of relief that I experienced. I am a person of great faith and to be faced with this obstacle and its dismissal by doctors almost broke me. The past 6 months have been filled with trauma recovery counseling, a couple ER visits in which I was diagnosed with nothing more than “anxiety attacks and a migraine”, decreased tolerance to light/sound/noise and most of all exertion, etc. Nothing short of daily trauma.
I can speak firsthand when I say people with ME/CFS are grasping (weakly) at straws. I was chalked up to be a lazy and stressed college student even by my closest friends and family. I spent what little energy I could researching as much as I could about CFS only to find that there is no treatment and little organization among efforts because of the plight of us sufferers. When I read about suicide being the number one killer in this disease, I was not at all surprised. The nature of this situation tore almost every shred of hope I had from me. Imagine being so sick that all you can do is lay in bed and everything that could distract you from your chronically ill state only contributes to your discomfort. “I would be curled up in a ball in the corner” is absolutely right. I was. I thought I had developed PTSD because I felt trapped in my own failing body, a constant reminder of the traumatic everyday my life had become.
Anyway, I would say enough gloom and doom, but that is the reality of ME/CFS. I have made peace with a lot of personal struggles although I remain unable to return to school or work. With what minuscule efforts I do have, I am focusing on creating a non-profit online website for individuals with invisible illnesses or disabilities to interact (a type of online support group). I am enjoying my time with family. There are a million mercies and silver linings I see each day, even though it was a path of stepping on thorns to get to that bed of roses.
That being said, the mental anguish that this disease put me through is unacceptable. The fact that people who have this have to fight for themselves is the biggest paradox of all time. ME/CFS sufferers are the living dead. Expecting that we would be depressed is not good enough. Burdening our families with out of pocket expenses because conventional medicine does not recognize ME/CFS as a disease is not enough. Desperately hoping for minimal relief in the day to day instead of expecting a cure is the very nature of why this disease is so debilitating. The medical community and government organizations ignoring this problem is not acceptable. I guarantee it will grow and tax them to a point that they cannot ignore if they do not become aware, take charge, and change.
Every aspect of this disease has taken over my life. I have not been able to pursue my education. I have not been able to go to church and practice my faith. I have not been able to work. I have no friends who know exactly what I am struggling with and the judgements and stigmas from people I have should be able to trust to take care of me have been almost more than I can bare. My social circle has been reduced to family and one or two conversations a week with friends. I have no promise that I will be able to return to any of these things or pursue my dreams of comfortably having my own family one day. My dream of a full life has transformed into a dream of suffering comfortably.
I am not stating this lightly when I say that the suffering of ME/CFS patients is enough to cause someone to want to be dead. As a sufferer of the utmost faith I have been there and back several times. I pray everyday that this cause will receive enough awareness and funding that I will see relief in my lifetime and I can be restored back to a place where I can actually accomplish my dreams instead of just dream them.
Until then I will not rest. Not because that is the nature of my condition, but because as a previously medically educated student, and a currently desperate and suffering patient, I can tell you the ignorance of medical and government communities about this disease to the very people who require their care and resources the most is a cause of the greatest and most immediate concern.”
Visit Annika’s family’s website, “Invisible Illness Initiative” HERE.