Last June, I was diagnosed with dysplasia. At first, it just felt like headaches, and I genuinely thought it was nothing serious. I never imagined that a year later Iād be here writing this. As time passed, the dysplasia kept growing and the pain became impossible to ignore. I started having horrible headaches and intense pain behind my left eye, spending nights awake crying because no pain medication would help anymore. One of the hardest parts is knowing that because of where the dysplasia is located, thereās an increased risk of losing my hearing and vision on my left side. Being only 20 years old and hearing things like that is terrifying.
Around the same time I was diagnosed with hypothyroidism, we don't know if it was because of the dysplasia or some other reason. In just a few months, I gained over 30kg, and it completely changed my body and my mental health. Iāve always been an active person. I love running, going on walks, moving around, being outsideā¦ it was such a huge part of who I was. Suddenly, the smallest movement would leave me sweating, exhausted, and bright red. My body stopped feeling like mine.
Going from 55kg to 90kg so quickly was something I wasnāt emotionally prepared for at all. I stopped going out, slowly pushed my friends away, and spent most of my time locked in my room because I didnāt recognize myself anymore and as you can tell I don't even look my age anymore. I felt embarrassed, uncomfortable and exhausted. It got so overwhelming that I had to start therapy to help me cope with everything mentally, while also dealing with the constant medical expenses and thyroid treatment.
We also found cysts in my thyroid, and now weāre waiting to see if they disappear or continue evolving to make sure they arenāt cancerous. My grandmother had thyroid cancer and had to remove her thyroid, so this has been another huge fear hanging over me. I try not to think about it too much, but itās scary waiting and not knowing.
Even with all of this happening, I still try to hold onto little pieces of myself. I do very low intensity exercises whenever I can because I genuinely canāt imagine my life without movement and being active and ome days are harder than others, but Iām trying.
The reason I finally turned to private healthcare is because the public system simply hasnāt helped me in time. My neurology appointment through the public healthcare system was requested on August 14th of 2025, and to this day the status still says āwaiting scheduling.ā Months kept passing while my symptoms got worse, and I realized I couldnāt keep waiting.
The surgery I need as well as the recovery is extremely expensive because of the location of the dysplasia and the fact that there are multiple areas affected. And honestlyā¦ Iām scared. I know Iām young, but lately it feels like my life has revolved around hospitals, tests, medications, pain, and uncertainty. I didnāt imagine starting adulthood carrying something this heavy.
If youāre able to donate, thank you from the bottom of my heart. Truly, every single contribution helps more than I can explain. But support doesnāt only come financially, sharing this page, talking about it, or simply keeping me in your thoughts means just as much to me.
I was really scared to post here because I've never done something like this, much less expose myself in a vulnerable way so thank you for reading my story and for making me feel a little less alone through all of this. ąØą§ If you're going through something similar and would like to make some questions, I'm no doctor but I can definitely tell you what I know and how I'm dealing with everything to make it easier to accept <33
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