“Growing up, I was in a lot of pain and couldn’t seem to keep up with my peers, no matter how hard I tried. I was confused and insecure. I naturally assumed everyone else was in as much pain as I was. My stomach would hurt when I ate. Throughout my middle and high school years, I struggled to maintain my grades and attendance due to sick days. When I was able to attend school, excessive fatigue kept me from fully participating.
I began to hunt for answers in March of 2019 when I started to notice walking and talking was becoming very difficult, almost impossible at times. I was stuttering and stammering, and my legs would just come out from under me for no explained reason, like they suddenly lacked the strength to hold me up. I went to see my mother and she immediately took me to see a neurologist who had helped her in the past.
Upon laying eyes on me, he was very forthcoming in saying, ‘You need to go to the ER right away for testing because this looks like MS to me.’ After several rounds of testing at the ER, the doctors couldn’t find any concrete evidence to make a diagnosis. They told me, ‘It is psychosomatic. I suggest you go to a psychiatrist.’ I was temporarily devastated but wasn’t ready to give up my search for answers.
For a year, I took my long list of symptoms to different specialized doctors to see if they could figure out what was going on with me. I kept a comprehensive three-ring binder of symptoms, doctor visits, diagnoses, test results, images, diet changes, etc. The list seemed to go on and on. Then, one day, I stumbled upon a YouTube video with a woman who was speaking about her struggle with Ehlers-Danlos Syndrome. I was intrigued and, for the first time in a long time, I felt hopeful I may have found some answers.
I began to realize I could do all the things on the list of criteria for EDS, things I didn’t even know my body could do. I contacted my primary care doctor and she referred me to a geneticist. I passed all the criteria and received a diagnosis of EDS shortly after being diagnosed with POTS. At first, I felt so much relief I finally knew what was wrong with me. Soon after, it started to sink in this was real, and my life will always be different than others. I had to grieve the life I thought I would have.
About a month ago, I went to see the neurologist for a recommended yearly checkup, which included an MRI. The doctor said, ‘Everything is fine, but…’ When I heard her say, ‘But,’ I immediately tensed up. I wasn’t really expecting anything to come back. I thought I had already figured it out. She explained, ‘There are two small lesions that don’t concern me, but one larger one that does.’ She recommended neck and spine imaging to check for more conclusive evidence but didn’t offer a diagnosis at the time.
My heart dropped. I feared the worst, that I have MS. The next few days were emotional and stressful. On top of getting inconclusive results from my doctor, I was moving that week and the relationship I was in ended abruptly. I found myself moving across town into my new apartment, alone, with a head full of questions and no concrete answers. My family encouraged me not to make assumptions about the worst-case scenario, but it was hard not to think about the spots I now knew were on my brain and not have an explanation about what it meant about my future.
Then something happened I wasn’t expecting. I began to slip into another episode, for lack of a better word. Yet again, I was having difficulty walking and talking. I couldn’t swallow without difficulty and occasional choking. Others were having to help me bathe and wait on me hand and foot. I didn’t feel comfortable driving, so I had to just let others take care of me as best as they could. I’m still awaiting the results of the neck and spine MRI I had done last week and, to be honest, I’m really scared this time.
I am lucky, though. I have a huge support network and people advocating for me. I’m still not ready to lose my full independence, so we compromised. My new apartment is right down the street from my family instead of across town, so it’s easier for them to help more often. Someone comes over at least once a day to help me get ready, make sure I have my IV fluids, tidy up around the house, and make a meal or two.
As hard as it’s been, I’ve accepted I need assistance taking a shower and washing my hair now. Friends stop by to visit often and help me out with little things that are a struggle for me, like taking out the trash or picking up packages. I’m extremely grateful and lucky for the amount of support and love I have in my life.
I was lost in fear and sadness and some days was losing hope. This still comes up for me, I’m only human. I’m determined to find the positive and create connection in all this. That’s why I look for ways to make new friends and spread hope while encouraging others to advocate for themselves. I have found my purpose through my pain. I always say to people, ‘My pain is my gain.’ Find a way to use your pain for good, don’t make it useless.
I am now officially diagnosed with EDS, POTS, and IC. I’m still awaiting test results for MCAS, gastroparesis, and MS. My advice is to never give up on your journey and keep advocating for your health. So many doctors have looked at me and said, ‘It’s all in your head,’ ‘It’s anxiety,’ or, ‘You should see a psychiatrist.’ I wanted to give up and it made me feel crazy, but over and over I have proven to my doctors and myself those statements are false, and I wouldn’t have any diagnosis if I had given up.”
This story was submitted to Love What Matters by Victoria Brown. You can follow her journey on Instagram and YouTube. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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