Thread by @ChrisTheCripple

Dear #MedTwitter, you need a be more aware of the after effects of #MedTrauma. Intense research or questioning/constant second opinions doesn’t always mean hypochondria. Maybe someone was misdiagnosed one too many times which led to too many life threatening situations.

Constant over-explaining doesn’t mean that they’re trying to make up a story. Maybe they just want to make sure that you have all the details to avoid misdiagnosis. Maybe they just want to make sure that you BELIEVE THEM.

These are just a few examples, but PTSD due to #MedTrauma is real and it greatly impacts people with chronic illnesses. I know because I have it myself. My last few health crises I diagnosed myself because I was constantly being misdiagnosed which even put my life at risk.

For example, the ER docs were so eager to write me off as an addict/drug seeker with opioid withdrawal that it took WEEKS for me to get diagnosed with C-Diff and even then it took DAYS for my #SickleCell crisis pain to be treated because they thought I was drug seeking.

Each time I was discharged I had to go back soon after because my symptoms kept getting worse until they were absolutely unbearable. I was practically begging to be tested for C-Diff. I eventually had a breakdown in front of the doctor begging to be believed before I was admitted

One doctor wrote in my file that it was morally and ethically wrong to treat me. My pain specifically, because he didn’t agree with my pain management doses. I can no longer get fair treatment at that hospital. He refused to even test me he was so convinced I had withdrawal.

I was admitted for my pain crisis at first but he refused to try to find the cause of my pain even though vomiting is VERY unusual for a crisis with me. The only reason I wasn’t having regular diarrhea was because of the IV pain meds but he refused to believe me.

I ended up driving over an hour to the hospital my SCD clinic is affiliated. Even they discharged me a few times because nobody would listen and they have ridiculous rules that limit admissions and usage of IV meds for SCD patients. I’m often left in severe pain with no recourse

My previous hematologist ignored my gallstones in favor of unnecessary treatments like red cell exchanges and overmedicating me instead of referring me to a surgeon because I was constantly going into crisis due to gallstone attacks. I was basically living in the hospital.

His malpractice caused me to go septic twice and have numerous bouts of pneumonia. The nurse practitioner would literally scream in my face about being hospitalised “too much” even though I was septic, had pneumonia, and in one case MRSA. Like I REALLY wanted to be there 😒

I went into crisis during a red call exchange which was at main campus of the hospital network which was not where I usually went. I was admitted since I started having a gallbladder attack. The hospitalist saw how bad it was and agreed that I needed surgery.

I lost so much weight so quickly it was scary, but my hematologist at the time ignored it saying that I needed to lose weight anyway because I was heavy/overweight. Anyway I was so worried about getting another gallbladder attack and missing my appointment with the surgeon.

So the hospitalist told the chief of surgery how bad I was that he penciled me in for the day after my discharge and I just didn’t eat anything since even broth triggered attacks. The surgeon skimmed my file for five minutes and said I definitely needed surgery.

Especially since the attacks were so bad, I had my appointment Monday and surgery on Wednesday. He was shocked when I told him I had been like that for almost a year! After surgery he told my mom that I had so many stones that they were crushing themselves into sand.

He also said that had I kept waiting, that I probably would have died because my gallbladder was on the verge of rupture. Even after the surgery I was constantly going into crisis but instead of trying to help me, I was labeled as drug seeking so I switched doctors promptly.

Shortly after, the pain stopped. Probably because I didn’t have a nurse practitioner screaming in my face and a doctor who refused to believe anything I said. The stress alone from dealing with them was causing me pain.

However until I went to my new patient appointment and officially had a new hematologist, when I did go into crisis, it was impossible to get decent pain management when I did have a #SickleCellCrisis. Even when I explained my story and showed proof I had an appointment.

Doctors just kept writing me off as drug seeking and I was often left writhing in pain. #SickleCell pain is unlike anything that you will ever feel. Yet I suddenly became a lying addict overnight even though I was actually taking LESS pain medication than before.

So now, due to my PTSD as a result of #MedTrauma, I make sure that I go over test results line by line. I constantly get second opinions, I constantly explain my reasoning and over-explain so they know I’m not lying about anything. Most of all I’m constantly terrified.

Especially in the ER which only makes my pain worse. I’ll stay home even if I HAVE to go because of something serious because I’m constantly afraid that I won’t be believed. Or that I won’t get pain relief I desperately need because I used my IV meds for the month.

I had pneumonia so I can’t get admitted for 60 days. So if I think I need an admission, I’m afraid to go to the hospital affiliated with my SCD clinic so I’ll consider going elsewhere but be terrified to do so because they might think that I’m being deceitful and drug seeking.

Yet all I want is the medical care that I NEED, but am so often refused. So I use video games as a distraction because I need something to keep me from breaking down in pain and causing more. Gaming is often the only thing keeping me sane in the ER and while inpatient.