Tiaonna Long

My name is Tiaonna Long, I am 26 years old, and I live in Marysville, Washington. First I would like to thank Eva for involving me in this project as it is a topic close to my heart. 

When I was in the 4th grade I started having back pain. I kept asking my mom to rub my back and was constantly telling her how uncomfortable I was. Shortly after that we had a scoliosis screening at school and the nurse called my mom and advised her to take me to a doctor. I ended up going to Children’s hospital in Seattle and was then officially diagnosed with scoliosis. I was so young that they wanted to monitor me and see if it progressed or stopped where it was. I had frequent checkups for years and the curve in my spine continued to progress. 

In 8th grade I got a cast taken of my upper body and was advised to wear a hard shelled back brace that went from under my armpits clear down half way to my hips. It had corset like straps on it and my mom had to cinch me up in it every day. The doctors hoped it would work but if it didn’t they let us know I was going to need spinal fusion. The brace was extremely uncomfortable and I had to wear it 22 hours a day including when I slept. The doctors had hoped this would stop the curve from progressing and hopefully put pressure on my spine to grow in the right direction. I wore this brace for a year and had no improvements and was in severe pain and discomfort, I had pinched nerves and chaffed skin. My mom decided I didn’t have to wear it if it wasn’t helping and let me burn it in a bonfire! As the years went on the curve progressed to about 65 degrees. I was 16 then when Children’s let us know that it was time to operate or I was in danger of my spine puncturing my right lung and being wheel chair bound by 30 years old.

In June of my freshman year of high school I had the spinal fusion with two Harrington rods and about twenty screws. I recovered well and did well after that for quite some time, until I was about 20. I started feeling flu-like often, with body aches, migraines, upset stomach, sleep issues, and the list goes on. I saw my Doctor and had a follow up X-ray and my rods and screws appeared to be in place and looking well. They ran blood work and all kinds of tests and eventually diagnosed me with fibromyalgia. 

Fibromyalgia is not typically found in people so young but can be onset early by a traumatic event whether it be physically or mentally. For me they believed my invasive spinal surgery caused my nerves to over react causing widespread chronic pain. This has been a struggle for years because I am so young, and I look healthy and well most days. Having an invisible illness is so hard in so many ways. It’s hard to explain to your friends and family why you have to cancel plans that day when you felt fine yesterday, it’s hard to show up with a smile when you feel awful, and it’s hard to find a doctor who doesn’t treat you like you are there to seek drugs. Speaking of drugs I became an addict shortly before my surgery around age 15. I self-medicated to ease my physical pain and couldn’t stop; Especially after I got prescribed so many opiates after my surgery. My addiction was off and running. That is a whole other story. I joined a 12 step program, and just celebrated 10 years clean and sober. Being an addict, in chronic pain feels like a sick joke some days. 

“It’s hard to explain to your friends and family why you have to cancel plans that day when you felt fine yesterday.”

Around age 22 I got even sicker. Sicker than fibromyalgia, something was wrong and all my doctors insisted I was fine. I have gone round and round with the healthcare system to take me seriously and I quickly realized I had to be my own advocate and nobody was going to do it for me. I was lead to a naturopathic doctor who worked with me and listened and eventually diagnosed me with an autoimmune disease called Hashimoto’s. My body was attacking my thyroid. 

So this brings us to the present. I will be 27 this summer, I have chronic debilitating back pain, neck pain and hip pain from my surgery, widespread aches and inflammation, and my body is under a constant state of warfare trying to attack my thyroid. My faith in God has walked me through every moment of every day that I wonder why I am alive. Was I put here just to suffer? What was his plan in all of this? As my faith grows I have got some answers to these questions and have made my health and wellness my mission. I have gone paleo and changed my entire lifestyle and eating habits. For the most part I finally have more good days than bad. I have been put in touch with some amazing people who are sick and ask me how I work on getting better. I have support groups on Facebook that I participate in so I don’t feel alone and I have a few close friends who are also in chronic pain or illness that I lean on when times are hard. But I never give up! Maybe for a few minutes here and there, but what good will that do me? I have people who count on me, I get to be a Mom today, I get to be a wife, a daughter, an employee and all of these wondrous things that wouldn’t have happened if I wouldn’t have gotten that surgery 10 years ago. I try to live in gratitude and not pity myself. 

“My faith in God has walked me through every moment of every day that I wonder why I am alive.”

I find my disabilities to be a very important part of who I am. Sometimes I wish they weren’t if I am being honest, but I have been in some kind of pain as long as I can remember and my whole life has been based around my health. As I have grown my relationship with my body has changed, I work vigilantly on loving myself and my body today no matter how it feels or acts. I know I am here for a reason and I want to live as harmoniously as I can with my disabilities, when I fight myself or my body and do more than I can do, I lose every time. I have learned how to have boundaries with my own self and that has been the hardest part. 

“I work vigilantly on loving myself and my body today no matter how it feels or acts.”

If I had the opportunity to be non-disabled would I take it? That is a very hard question. My first response is ABSOLUTELY! To enjoy life healthy and pain free and eat pizza and drink beer on the weekends like everyone else. As I think deeper though I truly believe in a plan greater than mine. If I wouldn’t have gotten my surgery, I wouldn’t have become an addict--at least not yet. The things I have learned being in a 12 step program have completely changed how I view and live my life. I met my amazing husband who is endlessly supportive of what I need and how I have to live my life, and I have made amazing supportive friends. If I hadn’t struggled as much as I have I probably wouldn’t value and recognize how amazing my parents are and how much they have done for me. I have a wonderful relationship with them. I wouldn’t appreciate and notice my good days. They would just be normal days to anyone else, but to me they are something to be so grateful for. I am more empathetic and understanding of others and how they are feeling. 

So I don’t know if I would change being disabled or not. I wouldn’t be the person that I am today; I am sensitive and gentle and caring and grateful and I know a huge part of that comes from fighting for my quality of life every day. 

“I am sensitive and gentle and caring and grateful and I know a huge part of that comes from fighting for my quality of life every day.”

What I wish that every non-disabled person knew, is that every day is dramatically different. How I look and feel today might be nothing like how I look or feel tomorrow. I am not exaggerating or trying to hurt your feelings if I cancel plans or look sick and go anyways. I would want them to know that NOBODY wishes to be disabled, and maybe treat the girl who is young and cute with a handicap pass in her car, just as nice as you would treat someone in a wheelchair, because invisible illnesses are real. It has shaped my whole life, and made me who I am. I am grateful for the opportunities I have had in my life to share and bond with others who also struggle, and on days I struggle I just go to sleep, say a prayer and hope tomorrow I feel better. I am always grateful for tomorrow--it is a chance that a lot of people don’t get, and I have to live my life right there. In gratitude. Or else the negative thoughts can take over, and life is too short to spend it wishing I had a different one.