What I Need From You When I'm at My Breaking Point
Like many of you, I have been struggling with various chronic illnesses for a very long time now; however, just this year, I have run into many a breaking point.
I always feel as though each meltdown has to be my last, and my last in the sense that I’m too miserable to keep going. But strangely, I’ve managed to keep trucking for longer than I would’ve ever thought imaginable.
For many years, I went undiagnosed for many of my illnesses, and was thus invalidated by not only every person around me, but every professional: every doctor and every therapist. I had my multitude of symptoms labeled as being purely psychological. However, this year, I finally managed to get many of my diagnoses (dysautonomia, intracranial hypertension, neuropathy, Lyme disease, and Ehlers-Danlos syndrome are just a few of the conditions I struggle with — and this is only the physical illness realm). I thought that with answers would come treatments. With answers would come feeling better. And with answers, would come that validation that I felt deprived of for so long.
My expectations for what would soon come after getting answers are now proving to be more far fetched than what I once hoped. For all of these years, as miserable as I’ve felt and as debilitated as I’ve been, I still had a little bit of hope buried underneath all of the defeat that I felt. It never really crossed my mind that I would have to grieve my health — that my conditions may not truly ever be well managed, and in my early- to mid-20s. I knew that I would have to continue to work my butt off going to appointments, dealing with insurance, and putting my body through even more failed treatments that do more harm than good. But I never anticipated being this overwhelmed.
Knowing that such big determining factors regarding my health are in my hands — that surgeries that could be of more risk than reward are up to me, is something that has caused me so much additional stress. For so many years, I’ve been trying to do my own research, advocate for myself, and ultimately put all of the pieces together. However, now, I have so much going on that I have doctors snapping at me with, “There is no cure for anything you have! I don’t think you should have any surgeries, because they’re not going to find anything! You just need to learn to live with it!” Having barely made it through each day in the last year alone and hearing this was a trigger for one of the many recent meltdowns.
Despite the crying, and despite how terrible I feel and how scary not only the world around me (derealization) but my own body (depersonalization) feels, I’ve managed to quietly keep myself existing with the hope that I have maintained in my mind. I’ve managed to keep myself going with the positive expectation that doctors seem to be trying to take away from me. I may not always outwardly show it, but if I weren’t flooding myself with positive affirmations, I wouldn’t be here to this day. Because I truly do feel like I’m the only one who is on my side.
So when I have a meltdown, when I open up to you and tell you that I’m feeling hopeless, frustrated, and scared, please don’t reply to me with, “You just have to think positively!” Please don’t tell me that I’m not trying hard enough. Please don’t try to talk me out of my sadness.
Let me feel sad. Validate my meltdowns. Tell me that you know that there’s no way that you could understand, but you could only imagine. Be there for me in my sadness without trying to immediately lift me out of it. Please be present as a support. I will try my best to take care of the rest.
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