How I Found My Voice After a Lifetime of Chronic Pain

By Marissa Whited

When I was a child, I was given a stuff red bear. The bear—or as I called him Mr. Bear—was my best friend and I took him everywhere with me. To this day I still do. That bear like me has seen many hardships and been through a lot. I think if my bear could talk he would tell you of my many hospital visits. He would tell you of the times I cried while getting my blood drawn. He would tell you of the nights I couldn’t sleep because my head felt like it was being pounded over and over by a hammer.

My bear was support system, he was the only one who believed me, never doubted what I was saying was true, unlike the adults in my life. Those same adults in my life who failed to believe me. There is hardly a time in my life when I don’t remember being in pain. The migraines started when I was only six and only got worse the older I got. I can barely remember a time in my life where I wasn’t swallowed up by pain or anger.  

My doctors and the adults around me didn’t seem to believe or understand me. I was constantly being questioned, second guessed or doubted. So many doctors took one look at me and decided it was all in my head, that my pain was not real because that doesn’t happen to children. So many people gave up on me, and over and over I was disappointed. I can recall being told that there wasn’t anything they could do anymore, that they were done and it was best that I move on. I was told was that it was all in my head, that I should stop focusing on the pain and it would get better. Whenever that would happen, this anger would boil inside of me. 

When I was thirteen, my biggest concerns were medications, doctor appointments and avoiding triggers. Things got worse when I got my period. The extra estrogen made my migraines even worse. But even than no one understand why this was happening to me. Since no one else would listen to me, I had to find out for myself. I became obsessed with finding a diagnosis. I needed answers but what I didn’t know was how long that road was going to be for me. 

I did finally get my first diagnosis at the young age of thirteen—chronic migraines. At sixteen, I was diagnosed with hypothyroidism, which means I don’t produce enough of the hormones my body needs, and pseudo tumor cebri, which literally translates to false tumor. Basically, it means all the spinal fluid in my body builds up in my skull and puts pressure on my brain, causing intense migraines. At seventeen, I was diagnosed with bursitis, or a fluid-filled sac that’s in between joints and gets inflamed, causing pain in my joints. I was also diagnosed with anxiety and depression. At twenty, I was diagnosed with chronic back pain. I can categorize my life by my diagnoses. My pain is real and it’s awful and it comes in more ways than one. Most people who don’t suffer from chronic pain don’t understand what it’s like. How debilitating it can be, how it doesn’t just consume your body but it also consumes your life. 

Doctors sometimes aren’t always good doctors or even good people. Just because they are a doctor doesn’t mean they should be. I can’t begin to tell you how many doctors I have seen who have just dismissed me, saying it was all just in my head, that the pain wasn’t real. Sometimes that was worse than the migraines  Nothing is worse than being told your pain is in your head. That somehow you’re causing it, that it’s your fault. Every time I didn’t feel good I asked myself is it real? Am I sure I don’t feel good? Is this how other people my age feel or is it just me? 

There were two doctors in my life who did believe me, who validated me and changed my life. The first time I met with one doctor, she looked me in the eyes and said I believe you. In that moment, I was filled with relief because finally I was understood. I was believed. 

My life has not been easy; I have had to overcome so many things and I have become stronger for it. Today I am twenty-one. I don’t eat anything spicy or with a strong smell. I don’t have any candles in my apartment. I keep Christmas lights up all year round because they are easier on my eyes. And I take at least one nap a day. This is my life is now, and I deal with it the best I can.

Here’s my advice to you. The next time someone you love complains they are in pain or their head hurts or something just don’t feel right: Don’t doubt them. You have no right to doubt what they are feeling is real. You are not in their body; you do not walk a mile in their shoes every day. You might not live with chronic pain, but it is real and I’m living proof of it. Since I was six I have lived with chronic pain, that’s my story and it's one story out of hundreds. If you are someone who does suffer from chronic pain or has an illness or disability, here’s my advice for you. When the people around you have doubts, or don’t believe you don’t give in. Don’t let their doubts become your demons because that will bring you down more than the pain will. Make people listen to you, make them hear you because if you don’t fight for yourself than no one else will.