I feel like before I dive in here, I need to provide a disclaimer. My mother was an RN. She specialized in geriatric care and was an angel to the dementia patients and other home health care patients she dealt with on a daily basis. She hated what medicine here in rural Missouri had become, how she was treated worse than a bag of rotten potatoes, and how I’ve been treated. Were she still alive this year, I know her heart would be just as broken, if not moreso, than mine at the struggles our healthcare providers have to deal with. She’d be furious–at herself–at the doctors who told her “she could walk if she wanted to”– at not being out there on the front lines helping. She hated being disabled because it kept her from the job she loved–nursing. I know more than many just how nurses, especially, pour their hearts into their work caring for, and saving patients’ lives. I also know that right now, with mixed messaging, many in the chronic illness community are hurting. And it’s to them I’m going to talk today.
You are seen. Your pain is heard and understood. And you are not alone.
I expressed something on Twitter the other day and it resonated with so many people I wanted to share it here. It is okay to not be okay right now with the healthcare workers being called heroes. Yes, many of us hold cognitively dissonant ideas in our mind. On one hand, yes, we acknowledge the hard, exhausting tiresome work that healthcare providers do. Our hearts weep for them. Many of us have nurses or other healthcare people in our families, so we understand. We get it. And yet, on the other hand, those of us with medical PTSD, who are medically abandoned, or living with undiagnosed chronic issues because our doctors don’t give a damn–we live each and every day with the fact that OUR medical people aren’t heroes. And yes, this is a “not all doctors” moment. But honestly, this issue hasn’t gone away. If anything, it’s growing.
I’m aware that the situations which gave us medical PTSD, the doctors who dismissed us, are part of larger, systemic issues. And those same systemic issues are why in many areas, the COVID response has been botched at best and why our healthcare people are struggling. Those patients who are being sent home with a Z-pack and an inhaler, told to “come in if it gets worse” when they’re already struggling to breathe. Yeah, they’re experiencing medical trauma, too. And there’s a good chance that they won’t get help for it, that they’ll be told “well it was just the pandemic” when chronically ill people know damn good and well that it’s always been this way.
It is okay to not be okay right now, especially if you’ve experienced medical trauma and/or have medical PTSD. I understand some people may not understand this. They’ll take what I said out of context. That’s not who I’m talking to.
Acknowledging this systemic issue is what will start to heal this and make it better. I think we all know that’s probably not going to happen anytime soon. If thousands or millions of people not getting care made news, we’ll, we’d hear about all the chronic pain patients abandoned due to Opioid Hysteria and who don’t live to tell the tale. But I can tell you that you are not alone. Your pain is seen and it’s oh so valid. And if I could do something to make it better, I would. I promise. Right now, I can use my voice to spread the word, both to educate and to comfort. It’s okay not to be okay.
