I’m sick of trying to navigate a Healthcare system that doesn’t give a shit about me. ⚛️ ##Ableism #ChronicIllness #Disability #disabilityawareness #DisabilityInclusion #DisabilityRights #Spoonie #spooniesupport #spoonielife #zebrastrong
Things have been weird. I’m getting a little more support outside of the help I gratefully receive here. But I’m feeling really detached and alone.
I’m still finding it hard to be believed. It’s getting a little easier but it’s tiny steps and when something like this happens, I feel discouraged.
I had one of the worst attempts at advocating for myself because the person just constantly told me I was wrong about what I said I was experiencing. She did not let me complete my sentences. The condensation was so clear in her voice. She could hear how much I was struggling to talk and think. I had to stop her and say “ you hear how upset I’m getting, why are you continuing to argue with me?” I had to point out so many obvious things like “as the client advocate of this agency, you are not listening to what I’m saying.” Or “you continue to interrupt me and ask me questions which is why you are not understanding. Let me finish.” (She couldn’t understand why I was bring up something from five years ago… ummmmm if you let me finish you would hear because it’s still not resolved. So trust me- I know it was a long time ago.)
She even found a way to tell me it was my fault that the agency hasn’t been helping me because i only just recently I told the case manager that I’m trying to figure this out. That was last week. I’ve been without services for over a year. Before that, I was getting not even the minimum of what is on my plan. So me saying something this one time doesn’t let them “off the hook.”
She repeatedly said “I just can’t keep this straight.” with the implication it was my fault. I said “as I said before I have ptsd and struggle to communicate, remember, and think clearly.” When I would tell her about things she said “I find that hard to believe,” and “I’ve never heard of that.”
She cut me off at one point and said “are we talking about housing or medicine because you keep switching back and forth” yes- when one doesn’t have access to their basic needs for years, that happens. And since both are equally important for survival it’s hard to not intertwine them. I wish I would have said “I am talking about my basic needs.” Period.
Also- she kept switching back and forth and so I said it back to her.
I’m dissociating more. My flashbacks have been intense. I was having them over the phone while talk to her. I said “I am having flashbacks I am trying to remember.” And she didn’t even acknowledge it or alter her approach. It was like I never said it.
There is so so so much left. It’s weighing so heavy. I have a plan moving forward to… well I guess just get louder. It’s concerning that these individuals are the client advocates for my state’s department of mental health services.
Hi, my name is DeadStar. I’m here because
#MightyTogether #ChronicIllness #ChronicPain #ChronicFatigue #RareDisease #InvisibleIllness #Disability #DisabilityInclusion #DisabilityRights #piawareness #PrimaryImmunodeficiency #CommonVariableImmuneDeficiency #zebrastrong #IVIG ##Spoonie #spooniesupport #Arthritis #ComplexPosttraumaticStressDisorder #Comorbidities #Anxiety #Agoraphobia