When you look at me do you see a girl who is in constant pain 24/7? A girl who some days can’t get out of bed to use the bathroom because she feels like her entire body is on fire from the inside out.
What do you see when you look around the room at each other, or even in the halls as you pass other students?
You might not understand or think about it, but some of the very same students you have known since kindergarten might be dealing with crippling anxiety, major depression, or they might even be in pain. It is unfortunately very common and the more we learn the better help we can be in the future.
July 2016, three months after I graduated college, my life changed forever. I was visiting family in Las Vegas. We were on our way home from dinner when a lady ran a red light going 60 miles an hour and t-boned us on my door. We were pushed 40 ft. As this happened my head had hit the window hard a couple of times and then my head went the opposite way. I am here today because of the car I was in.
When EMS came to check us out, I was okay. I was sore and in shock, but I was still standing. I was still in Vegas for another week and had a few tests done, which showed nothing. I finally came home and went to my doctors. I was sent to a chiropractor and was told a lot of my symptoms were depression. I knew something wasn’t right because I was just in a fog and had a lot of pain where I was hit. This went on for 4 months. I was sent to a neurologist who told me within five minutes of hearing my story that I had a concussion and I ended up with post concussive syndrome, which is when you have concussive symptoms a lot longer. I started trying out different medicines, and therapies. One after the other I tried and failed. Overtime I continued to decline.
I was a college graduate who was working full time as an assistant event planner, which had been my dream since I was right you are sitting a senior in high school. I started to notice that I was having a difficult time concentrating and often having to ask over and over about a task. I had never been like that before and I knew something wasn’t right. I spoke with my doctor who decided to take me off work.
I continued to go for testing one of which included a neuropsych exam, which took place over two days. The results showed I had lost a few IQ points and I was in the low percentile for certain skills. That was a hard pill to swallow as I had graduated from Michigan State and on the Dean’s list. At one of my appointments for my pain management doctor I was basically told this was in my head and that I am healthy and should be celebrating. He even gave examples of people who might bring on pain to get out of something or seek attention.
How can someone who is in constant pain everyday with no relief be able to celebrate? What 21 year old would want to make this us or exaggerate? Not this girl that is for sure.
About a month later after being in the hospital for being in such severe pain I was sent to another pain management doctor who told me I had Central Pain Syndrome.
Central Pain Syndrome is neurological disorder that is caused from damage to your brain, brainstem or spine. You can get a variety of symptoms including burning sensations, stabbing, aching, pins and needles among many others. My nerves are always firing off that my brain doesn’t know what pain is anymore. Most times it’s hard for me to be touched, showers feel like razor blades on my skin and worst of all whenever I am cold my goosebumps make me want to rip my skin off. I have been electrocuted from plugging my computer charger in and dealt with a broken shoulder for 10 months because I thought it was my central pain syndrome. As of right now there is no cure and most treatments are trial and error. I am currently on no medication other than what I was on before the accident.
During the past few years, especially when, I didn’t work I was so down on myself. I felt like the biggest failure and felt like the weight of the world was on my shoulders.
I was depressed and all I did was cry and curl up in my bed trying to shut out the world. I
had an amazing support system of family and friends as well as my boyfriend. If I wouldn’t have had them, I’m not sure where I would be today.
Some days when the pain is off the charts, I become afraid of the future.
Afraid that I will be like this every day for the next 50- 60 plus years.
I fear that I will never be good enough because right now I still can’t work full time.
I fear that maybe one day in the future it will be hard for me to have kids.
Most of all I fear that I am a burden to everyone I know.
I started to think about how to take this horrible situation and turn it into something positive. I didn’t want to be negative and make the people near me not want to be around me. I started blogging and the movement called Be Forever Strong. It is about chronic pain and mental health awareness. I realized that I needed to be my own advocate because no one knew me better than me including doctors. In the last three years I have written and published a series called With Love, Series, created my blog and created a podcast called With Love, Alexa. I want to be able to help others dealing with situations like mine that feel like they can’t go on. Doing everything I have done has made me realize that as bad as this situation is maybe I was meant to be the one to go through it to have a platform to help others in similar situations.
I want you to know that you can go on.
I want you to know that you need to go on and fight.
We need to open our eyes to the fact that not every sick person looks sick.
That not every person who is hurting is physically covered in their scars.
Just because you can’t see something doesn’t mean it isn’t there.
The more empathetic we can be to others the better our world can be.
Are you hurting? Do you or someone you know have scars on the inside?
You are not alone. You will never be alone.
It’s time to stop victim labeling and making people feel bad about their situation. I personally hate the term victim. I am not a victim. I am a warrior. Each one of you are warriors or will become a warrior. If we can each help one person, we would probably have a lot less suicides. People would maybe feel comfortable to ask for help because they won’t feel like a failure.
The first step to get taking away the stigma is to listen. Listen to your peers and when I say listen I mean put the electronics away and focus who is talking to you. If someone tells you that they are having a hard time tell them that you hear them and that you are here for them. They need to know people are listening and that they are heard.
A very important lesson I have learned and one I hope you will take from today is to be your own advocate. You are the only ones who truly know your bodies. People can tell you anything they want to about you, but it doesn’t make it true. This relates to not only invisible illnesses, but to everyday life. There will be times you might have to advocate for yourself in College, or in the work force. The first step is to believe in yourself because if you don’t how could you expect anyone else to. If something isn’t how you want it then change it. You will never feel like you should have done more if you are continually stand up for yourself.