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Masks off, accepting where I’m at with my illness #Journaling #Grief #MastCellActivationDisorder #Emotionalexhaustion
Here’s a portion of a email I wrote to my husband. He is struggling to see me.
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I’ve been grieving—quietly, deeply. Grieving my health, yes, but also the emotional weight I’ve been carrying for a long time. I’ve spent years hoping for more support from my family, from my marriage, even from myself. And I’ve realized that I’ve been overextending in relationships, pretending I’m okay when I’m not. That pretending has taken a toll.
I’m working hard to accept the reality of my illness—what it means for my body, my energy, my capacity.
Another part of what’s been incredibly hard is learning how to actually speak about how sick I am—how much pain I’m in, how exhausted I feel every single day. For most of my life, I didn’t have the language to explain it. I wasn’t taught to. I was taught—especially by my mom, who still refuses to accept her own illness—to push through, adapt, ignore it, survive minute to minute, day to day. I learned to turn inward and believe that I was the problem.
I am not a complainer and it's been hard for me put my pain into words without feeling like I'm complaining or repeating myself.
I’ve only ever lived in this body, so I didn’t know that what I experience isn’t normal. I didn’t realize that this kind of pain, fog, and fatigue is rare—not everyone is walking around like this. And now, I’m slowly waking up to the truth: I’ve been pushing beyond what I can handle for years. I’m not just tired—I’m in a body that is shutting down from being forced to function like nothing’s wrong.
The consequences of that pushing are showing up right now. I’m getting sicker. The toll it’s taken on my cognitive function, my ability to work, and even my self-perception is devastating to me—both intellectually and emotionally. I’m not okay. And I’m just beginning to understand how deep this goes.
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