Thread by @ChrisTheCripple

I’ll say it AGAIN for the people in the back... I DON’T WANT A “CURE” FOR #SICKLECELLDISEASE! What I DO want is for our pain to be TREATED NOT IGNORED. I DON’T want to worry about the ER docs labelling me as a drug seeker out of IGNORANCE/BIGOTRY. 1/?

When I come to the ER, I want to be BELIEVED when I say I’m having crisis pain. Followed by PROMPT AND EMERGENT administration of the dose of pain medication I NEED! Sickle Cell crises are an #ActualEMERGENCY and require immediate treatment! More time in pain = MORE COMPLICATIONS

The longer someone is in pain without relief, the more likely they’ll need an admission into the hospital! Also, pain scales are garbage! Personally I measure my pain by my ability to function. If I’m in the ER, I’m not functioning!

Using pain contracts/pain management plans in #SickleCellClinics that impose limits on hospital admissions, infusion center, and ER visits is unconscionable! The same goes for ruIes that limit meds. Like only being able to get IV meds once every 30 days (for SCD pts) for example.

Policies like those above not only demonstrate ignorance, but also bigotry. I don’t see cancer patients being held to similar standards. Black folks are more likely to be under-treated for pain. #SickleCell is more common among black folks so we’re mistreated and mistrusted often

As I get older, the more I realise that #InstitutionalisedRacismInMedicine is extremely overt and the #OpioidCrisis has only made it louder. I’ve been spoken to in ways where I felt I was in marijuana propaganda during the 30s/70s or cocaine propaganda during the 1910s.

The only difference is that most doctors usually use nicer words mixed with jargon you might not know unless you’re medically literate. So you think they’re doing all they can. I’ve even had doctors make up laws and mention nonspecific state “guidelines” that don’t exist.

Asking for a patient advocate or social worker is often asking to be intimidated. Which often involves someone with a badge whether it be security or even worse...POLICE. I don’t think I need to spell out those implications considering the current climate with black folks and 🚓

The last time I asked for an advocate or social worker, since I wasn’t getting proper pain management, the nurse manager came in with a security guard who stood in the corner and glared at me aggressively. It was obviously a tactic and I refused to take that bait.

They also constantly gave me the runaround for a doctor who just refused to listen to me or believe anything that I said. So I never got the proper medication I needed which meant that my pain was never managed. All because of that doctor’s ignorance about #SickleCell

#SickleCellDocs, can you please tell your other #MedTwitter colleagues that there’s no test for a #SickleCellCrisis? Blood tests are often the difference between pain relief or being left in extreme pain and streeted #BelieveSickleCellPatients #OneBloodCellCausesCrisisPain

#MedTwitter, While blood tests are a good tool, they’re NOT definitive indicators of whether or not someone is having a #SickleCellCrisis. What IS a definitive indicator is LISTENING. TO. YOUR. PATIENTS. Listening is the best tool you have as a doc. #BelieveSickleCellPatients

Also #MedTwitter, when you BELIEVE your patients, they are more likely to trust you and trust is key to your relationship. Especially with chronically ill patients who are more likely to have experienced #MedicalTrauma. They aren’t going to open up unless they trust you.