u/1000000Stars

Therapy is not helpful to me. Please respect this statement.

My quality of life depends on two toxic medications. The longest one of them typically works is about five years and I have surpassed that timeframe. I have tried alternatives without success. I am not a candidate for surgical intervention.

My condition causes severe cognitive limitations. I tried getting help with cognitive disability. It was a nightmare and I am still trying to fix the damage. Essentially, I was never evaluated. I was discredited for reasons I still don’t fully understand.

Since then, providers have started treating me differently. They don’t listen to me and they’re very dismissive. I have written a letter to request that my documentation be corrected, but I do not have faith in our medical system (US).

I have been fighting with everything I have for over a decade. I became a full-time single parent of three kids a couple years ago. I’m losing health benefits soon, so I will lose access to a lot of helpful things. I can see the writing in the wall.

How do I have a conversation with my doctor about quality of life? I know she has no idea how much I struggle day to day. I tell her, but unless a person lives it I don’t think they really comprehend what it is like when your brain just does not work.

I have tried everything I know of to try. I have read every study. Traveled across the country. What I want:

1. A meeting with healthcare rep, HCPOA and my kids to discuss end of life wishes.

2. No more preventative care. Mammograms, colonoscopies, etc. hHealthcare visits are traumatic, they waste time and energy.

3. No more CT scans, because we aren’t going to do anything different.

4. No more eye exams because the ophthalmologist tries to take me off my medications to save my eyes. What good is vision if I can’t think?

5. I’m tired of trying to explain to doctors how limited my quality of life is. I want a note or something that says quality of life intervention only.

I’m tired. Healthcare keeps making me worse. I need them to focus on my goal of just surviving a little longer for my kids. That’s all I want - maintain the things that are working and let the rest go. I need fewer battles and more help. I understand that what I need does not exist, but I’ll take any suggestions that may get me closer to my goals.

Thank you

Thanks

I have written a formal complaint letter. Who do I address it to? I am in the U.S. My options are patient experience or a patient advocate. I cannot find titles or an org chart.

Due to medical PTSD, I sought support from a counselor. She supports this, not only for my safety but for the sake of other patients. She keeps reminding me that the healthcare organization should care and want to know what happened. I need the encouragement, because it is hard to believe anyone in medical admin. cares.

Laws were broken, ethics violated and the presenting symptoms were untreated. Aside from documenting the experience, I am asking that incorrect, damaging documentation be removed from my record.

Can anyone direct me to the best department? The letter is eight pages, and that is as concise as I could be. I’ll take any advice or experiences, whether they be positive or negative.

The gist of the situation is that I had a very young, inexperienced therapist who was supposed to help me with medical ptsd. She violated confidentiality and tried gate keeping medical care. She must not believe/comprehend my level of disability/risk factors.

The medical provider became hostile, questioned my credibility and documented that I’ve been mentally ill my entire adult life. I do not have a history of mental illness FWIW. My medical conditions are fully documented so it should be easy to clear up any misunderstanding in theory. I’m just not convinced they’ll care.

I have rare conditions and underlying hEDS. Providers could injure me if they don’t listen carefully. It has happened more than once before, and they are even less likely to listen to me if they don’t think I’m credible.

I have cancelled appointments except with my primary team, because no care feels like my safest option. Part of my reason for documenting all of this is so that if something happens to me, like I fear, my kids have a record. I am tired and sad, because I have very low expectations of healthcare admin. However, I know I am doing the right thing regardless of the outcome.

Thank you for reading.