Guest post by Celia Paz Chao from Spain
When I think about being disbelieved by doctors, even though I have many experiences, two stand out the most. The first time I lost my life metaphorically, and the second one I almost didn’t make it.
I was sixteen when I experienced my first flare up, which landed me in bed with an amount of pain and tiredness I’ve never experienced before. I went to a handful of doctors, who looked at me in disbelief before I landed in the consulting room of a rheumatologist.
When I have joint pain my body tends to form itself into certain positions – for example, my hands will make fists and I can’t open them. This doctor, who decided I was lying from the beginning, performed a physical examination on me that brought me to tears. She opened up my hands and forced me to stand up. I was devastated both physically and emotionally when I left. I didn’t go home that day. I stayed in the hospital for a week, but they didn’t perform any tests or x-rays; instead they sent a psychiatrist into my room, who asked me if I was jealous of my adopted sister, hated school, etc.
In the middle of the consultation I stood up for myself and told him to leave. I signed my discharge papers an hour later and went home in agonising pain. I was bedridden for two and a half years after that, until I found a doctor who believed me and diagnosed me with arthritis.
The second time around not only doctors where involved, my family didn’t believe me either. I started feeling extremely tired, unable to focus, I was putting on a lot of weight; something was going on. At the time I was studying across the country, and when I came home in the summer my body was screaming for help after one of the worst years of my life. But the doctors said it was a flare from the arthritis and my parents took me on hikes to lose weight.
After one week at home I collapsed and had to stay in bed. Before long I was almost comatose; my sisters would come to see me but I didn’t knew who they where. After three months like this, because things were getting serious, doctors decided to do a complete blood panel, to find my TSH (thyroid stimulating hormone) was dangerously high. They rushed me into hospital and I spent a couple of nights there. I was so close to entering a coma, just because they hadn’t believed me. They diagnosed me with hypothyroidism.
The doctor who diagnosed me with arthritis in the beginning knew that wasn’t it because of my symptoms. It took him and his team ten years to finally get me the right diagnosis, and just a few months ago I was diagnosed with M.E.
16-year-old me appreciates writing this, because she felt alone for so long. She felt like she was faking it even when the pain was bringing her to the floor. She had no one to talk to, and the healthcare professionals who were supposed to help her navigate the hard reality of becoming disabled at that age were her enemies. So sad, that the people who are there to help you turn out to be the ones who scar you the most.
16-year-old Celia grew up hating doctors, never trusting them, and you know what? That’s on them.
You can find Celia on Instagram