I have never spoken openly about my chronic illness. I guess I did not think it would be a subject anyone would care to read about. Nor did I want others to feel I was seeking attention or pity. Judgment happens a lot when others find out you suffer from a chronic condition that has no cure. After having a variety of people following me on social media, I have learned differently. It felt oddly comforting to read others were out there with chronic illnesses and they were working to accomplish their dreams of writing.
Since I was 15, I could imagine doing nothing other than becoming a writer. My English teacher gave me an assignment. She placed a picture on a wall and asked us to write a short story about it. I spent the entire class writing the story and never thought about it being good as I turned it in. The next day, however, my teacher had read it to the entire class and to every class she had before my class. She walked proudly to my desk and handed me the first A’ I had ever earned and said, “You could be a writer someday.” I caught the writing bug at that moment, and I never looked back. I am sure most of your stories are like mine. We all have that one moment that spoke to us and showed us the path to our futures as writers.
We do not live in a perfect world, so I cannot tell you everything was a fairytale after my great teenaged epiphany. In my 20s after I had my son, I felt bouts of body pain that would last for three or more days in a row. I never could get a straight answer from the doctors I spoke to. They would simply suggest that I was young, or I needed to lose weight, or maybe I needed counseling. No bloodwork was ever done except a thyroid test and those results always came out as normal. I was gaslighted for years as the symptoms became worse and more things happened.
It was not until 2013 on Easter, I nearly blacked out in front of my family. To say it scared me would be an understatement. It terrified me. Tons of blood work were done. Years had passed since I was that naïve twenty something. They had more technology to test the thyroid levels, and they finally saw it. I had thyroid disease. Just like my mother. The doctors found a tumor on my mother’s throat when she was my age and that fact terrified me.
I felt around on my throat and in 2016 I found a lump. It was surprisingly noticeable to the touch, and I could not believe I had never felt it before. Maybe I just did not want to know. They did an ultrasound, and it was half solid and half liquid. That raised a red flag, and I underwent a biopsy. Thank God it was not cancer, but they discovered I have Hashimoto’s disease. It is an autoimmune disorder that attacks the thyroid gland, and it causes my immune system to attack my body. My thyroid no longer looks like a normal thyroid. In fact, my last ultrasound I had said there was no recognizable thyroid tissue left. Hashimoto’s disease triggered other autoimmune disorders in my body. I have arthritis attacking my joints and I developed tachycardia.
I took a break from writing for a few years as I underwent treatments, more gaslighting and underwent the trials and many errors of trying to find the right medications. It took years for me to find a Dr. that would believe me and treat me like a human being. To people who never go through such a thing, I thank God you are well. To the chronic illness community, however, this is something we deal with regularly.
I thought I was dying. My body felt like it was dying.
I recognize that can be hard to understand to those who have never lost their health, but the pain I was experiencing was unreal. I thought there was no way a person could go through such pain and live to tell the tale. I went through depression, anxiety and then I accepted my fate. This was my life. I would not die, but how was I going to live? Through all my treatments and therapies. My mind would always drift to writing and my dreams of becoming a well-known author. How could I chase a dream with weak hands? How could I give an interview with my speech slurring if I became too tired? I could no longer stay up late like I used to; how would I finish a book when I had a son to raise? There would be no time. Despair tried to set in. I had stories inside of me that needed to be told, poetry that needed to be heard. But how? How could I be anything more than sick?
I woke up one morning after my service dog had passed away. My heart was beyond broken. I felt lost. I sat outside on my front porch, and I thought about my life. I don’t like to use the phrase, feeling sorry for myself, but that was what I was doing. I was not the first nor the last person to have a painful disability. So why did I let that stop me from living? I was not living; I was existing. Many wonderful people with a variety of disabilities found their accommodations. They found a way to achieve their dreams, no matter the challenges they faced. So why was I sitting there on my porch thinking about what I could not do instead of what I could do?
I gave myself a few more days to mourn my dog, then I put my feet on the floor and went to my computer and wrote. It was not much at first, only poetry I had written by hand in my diary. But I felt those wonderful feelings again. Writers understand what I mean. It is that rush you feel when the words leave your brain and finally appear on paper. You are giving life to characters and worlds that lived inside of you. My fingers and body ached. The pain made me soak through my shirt with perspiration, but I was writing again.
I published my first book a year ago and my second this year. I have learned a lot about myself and what I am capable of. I am stronger than I thought I ever could be. No, things are not perfect. I have my bad days where I must write from my bed on a breakfast tray and take my meds on a regular schedule to combat the pain. I avoid phone calls because I stutter or slur on my bad days. I write at my desk some days as I sit on a heating blanket to combat the pain in my spine. There are some days when I have to just rest in bed wrapped in a heating blanket in the middle of the summer for days until I feel human again.
One thing I do on my bad days and the good days is that I stay positive even if it hurts. No, it does not hurt physically to stay positive; it hurts mentally. It is a battle to keep writing when you are in pain. It is painful to keep going when your body feels as if it has abandoned all hope of functioning normally. I have wept many tears before sitting at my desk and writing the next sentence.
Why do I do it? Because I know I was meant to write. The passion for telling stories is so deeply embedded inside of me. I cannot give up, even if I wanted to. There are days when I want to give up, I will not lie about that. But I never will.
I don’t want you to give up, either. Yeah, I am talking to the one in the back with the chronic illness. Don’t you dare give up. I know it is hard; I know it is painful, but please don’t give up. There are readers out there ready to read your books. Let your voice be heard. You are stronger than you realize. I know the battle you face every day, but I believe in you.
Keep writing.
