Having my first MRI brain scan reminds me to keep advocating for myself
The experience has encouraged me to remain curious about my health
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I recently had the first-ever MRI scan of my brain, not something I ever expected.
Getting an MRI came up during one of my routine sickle cell disease checkups, appointments I usually have every six months. As the doctor reviewed my medical history, she noticed something important. Here in the U.K., a cohort of sickle cell patients, as children, were routinely given brain scans to check for signs of silent strokes, which do not present obvious symptoms, but can have long-term impacts. But because of my age and where I fell within that cohort, I’d never had a brain scan before. It hadn’t even been brought up.
I found this both surprising and thought-provoking. Over the years, I’ve heard other people with sickle cell share their experiences of silent strokes and the impact they’ve had on their lives, and I often wondered how someone would even know if that was happening without having a scan. Still, it wasn’t something I thought to bring up.
Taking charge of my own care
When my doctor suggested having a brain MRI, I didn’t hesitate to respond. For me, knowledge is empowering. I’d rather run the tests, understand what is happening in my body, and make informed decisions than live with uncertainty. I know some people prefer not to know, believing that once you know, everything changes. For me, the opposite is true. Knowing gives me the chance to proactively manage my health.
The scan itself was surprisingly enjoyable. It lasted about 30 minutes and involved lying very still in a narrow tunnel while the machine made a series of loud, unfamiliar noises. I’m grateful that I’m not claustrophobic, because I can imagine how challenging that could be for someone who is. I made myself as comfortable as possible, and to my surprise, I actually fell asleep.
I’m now waiting for the results, and I hope there is nothing concerning to report. I’ve experienced some severe headaches over the years, but that doesn’t necessarily mean I’ve had silent strokes. Still, having the scan brings a feeling of reassurance, regardless of the outcome. I plan to share an update once I have the results.
What stands out the most is that I didn’t know this was something I could even ask for. I’m grateful to my healthcare team for identifying the gap in my care and suggesting a scan. Too often, patients aren’t presented with all available options, especially when it comes to preventive care.
This appointment was also a reminder of the power of collaborative healthcare. Sitting with a doctor who took the time to review my history, discuss options, and involve me in decisions about my care felt refreshing. It reinforced something I’ve learned over time: The most productive appointments are those where you come prepared with questions.
In the past, I often attended checkups passively, waiting for the doctor to lead the conversation. Now, I understand that these appointments are for me. I’m not a box to tick off on a checklist. I am a person with sickle cell disease, and my experience won’t look the same as someone else’s. Asking questions, exploring options, and advocating for myself help ensure that my care reflects that reality.
This experience has encouraged me to continue challenging assumptions and to remain curious about my health. Sickle cell affects each of us differently, and staying informed about our own bodies is one way to continue caring for ourselves with intention and confidence.
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.
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