How Do You Advocate for Yourself in the ER?

Being level-headed while in pain is a hard task but sometimes, you have to dig deep and find strength when in the Emergency Room. I always try to be cordial(leaning toward kindness) to every health worker assigned to me and when I'm speaking to the doctor, I try my best to explain my symptoms in an informed but calm tone so they don't think I'm telling them how to do their job. Sometimes, this method doesn't work and in cases like that, I simply ask to speak to a social worker or health advocate. Part of their job involves advocating for patients and I don't think many warriors know that they exist within the healthcare ecosystem.

I was an LPN before Sickle cell prevented me from working, so I have experience as a patient and former caregiver. As a patient, it would be so hard to convince healthcare workers that my pain was real. Some refused to really examine my bilirubin levels and know that my red blood cells were hemolyzing or being destroyed. I would be loudly screaming in pain and crying non-stop due to the pain. I've had healthcare workers completely ignore me and even accuse me of just seeking pain medications. Mind you, my hospital visits were quite few and in between be ause I started choosing to deal with my crisis at home rather than tolerate mistreatment and callousness at the hospital. Sometimes, the pain would be so great that I could not manage at home and would unsuccessfully maintain adequate hydration due to my wanting to just have the pain to stop. The last thing on my mind would be my intake of fluids at home. As a caregiver I never wanted another person to experience any of the discrimination and lack of compassion I have gone through. I don't think most healthcare workers realize a kind word, compassion or soft touch works wonders, especially when you are out of your mind in pain. I have found that having a really good relationship and communication with your PCP or Hematologist is quite helpful. Having a care plan established with them is good seeing as if doctors or nurses will not listen to you, they may be more willing to listen to another professional in the field. When at the hospital give them the name of your doctor and phone number to contact them if you have it. If you and your doctor have an established plan and they encourage you to have the hospital contact them if you are in a crisis, do so! Advocate for yourself and utilize the resources your doctors have given you, this is your one life after all. Hope this helps!

It's not only @the ER, even when you are admitted. One time I was in a very serious crisis, with so much pain crying... We had called the nurse several times but she refused to help. I had to walk out of bed with all that pain, and when I reached the nurses station she said I was just acting up, I had to cause alot of chaos to the attention I needed. It's really sad that when we are in pain, we are not taken seriously.

I stopped going to the hospital because all they do is give me painkillers. So then I'll just get thr painkillers at home and just try to not "disturb" them. It's so sad