TW: Disability, chronic illness, chronic pain, medical trauma, grief
I’m 30 years old, a disabled woman, and married to an absolutely amazing man. I think I just need somewhere to vent because lately I’ve been feeling so alone in all of this.
When I met my husband, I was healthy, active, and happy. I had a life I enjoyed, things I wanted to do, and a future I could look forward to. Then COVID happened, and everything changed.
I was a first responder during the pandemic, and I got COVID seven times. Symptomatic every time..low oxygen, high temp, delirious, the whole works. Looking back, I regret not quitting my job every single day. I gave so much of myself during that time, and I never imagined that I would be the one left trying to put my own health and life back together afterward.
Since getting COVID, it feels like one thing after another has unfolded. I was diagnosed with a connective tissue disorder (yes, born with this obv but symptoms weren't as bad til post COVID) and POTS (yes, POTS is a real medical condition, and I have been clinically diagnosed). I've needed multiple neurosurgeries within just a few months of each other. I ended up having other rare conditions, too, and I live with severe chronic pain and debilitating brain fog. I haven't been able to drive for almost two years now.I suspect the high dose of gabapentin I was taking contributed to the worsening of my brain fog, and I'm currently trying to wean off it with doctor supervision.
I also developed a CSF leak that required a blood patch. A year later, I'm still dealing with significant intracranial pressure symptoms and can't tolerate lying flat. I'm taking a diuretic three times a day just to manage things. This was caused by the blood patch my doctors think.
My skull is now fused down through multiple levels of my cervical spine, and I also have a lumbar fusion. I'm only 30. Sometimes I struggle to comprehend how much my body has been through in such a short amount of time.
And honestly? I'm angry. I'm exhausted. I'm grieving.
I'm grieving the healthy version of myself. I'm grieving the independence I used to have. I'm grieving the things I used to do without thinking twice. I'm scared that this is my life now, that I'll never get better, and that I'm somehow stuck in a body that constantly hurts and a mind that forgets.
One of the hardest things is that my husband is genuinely wonderful. He takes care of me, never complains about my conditions, and understands how upset I am about everything that's happened. I know how lucky I am to have someone who loves me through all of this.
On my good days, even while I'm still recovering from neurosurgery, I try to put him first in the little ways that mean something to me. I cook his meals for work, pack his lunches, and do the things I love doing for him. Those things might seem small, but they make me feel like I'm still able to contribute something and be the wife I want to be, even when my body limits so much else.
But having a supportive husband doesn't make the grief disappear. I can be grateful for him and still be devastated about what has happened to me. Both things can be true.
I'm also heartbroken about the possibility that I'll never be a mom. That's something I've struggled with deeply, and it's difficult to explain what it feels like to grieve a future you always imagined might be yours.
I look at my life sometimes and wonder how I got here. I went from being healthy, active, and working as a first responder to becoming unemployed, navigating multiple serious medical conditions, recovering from major surgeries, managing chronic pain, and wondering what my future will look like.
I'm scared I'll never get my old life back. I'm scared I'll always be in pain. I'm scared of what else might happen. And I'm tired of having to be strong through every new diagnosis, every surgery, every setback, and every day that my body doesn't cooperate...
I also don't want to be inspirational. I don't want to be told how strong I am. Sometimes I just want to be 30 and not have to think about surgeries, medications, spinal fusions, intracranial pressure, or whether I'll be able to get through a normal day. I'm "strong" because I have no choice. It's either deal with it or give up.
I miss who I was before all of this. I miss feeling safe in my own body. I miss being able to make plans without wondering how sick I'll be or whether I'll have the energy to follow through.
I'm not really sure what I'm looking for by posting this. Maybe reassurance from people who understand. Maybe just a place where I can admit that I'm struggling without feeling guilty about it.
I feel so alone sometimes, and I just needed to get this off my chest.