Are You Feeling Invisible?
I have not been to the emergency room in years due to the treatment I received years ago. So, consider how I felt when I had to go last month, and that is after thinking about it for two days.
Previous trips to the ER
I must say, previously, the norm for me would be to go to the emergency room to address a painful issue. I would receive fluids and something sufficient to get relief from pain, and in my situation, it would show up as my blood pressure going down. Not only that, but I could then sleep. I know about my blood pressure and pain link because my past primary care physician and I would monitor my pain levels and how it impacted my blood pressure. Furthermore, I just stopped going to the emergency room because I felt I wasn’t visible, nor was I being heard... I was just being overlooked.
For those who don’t know, I have sickle cell trait with beta-thalassemia minor, which produces clinical symptoms of sickle cell disease.
When I was in the emergency room last month hours after blood work, I was told that it looked like I was having blood clots... but nobody came to explain further what was found. I ended up telling them about my blood conditions and that is as far as the conversation went. I was also diagnosed as having hypertonicity of the lumbar paraspinal musculature, which is the excessive tone or tension in my back muscles and hips, and I wondered if so-called “sluggish blood” could contribute to this condition. I never received an answer.
Changes to treatments
Since national changes were implemented in 2015-16 regarding prescription opioid use the treatment I received in emergency rooms has drastically changed... to where it’s not worth going if I’m going to be discredited, discriminated against, and humiliated. All things that add to an already stressful day.
What I mean about being humiliated is; when you’re rolled out into the waiting room of the emergency room before you can have a chance to put on your shoes and shirt and before anyone removed the ECG monitoring electrodes from your chest. I eventually chalked this visit up, with the rest of them, as a loss because, I came out of the emergency room in the same condition as when I entered it and with no more information than what I had before I got there and out hundreds of dollars. I was in the same boat as if I did stay at home.
If the American College of Physicians realized that pain in sickle cell disease is daily and that patients are at home struggling with their pain, rather than going into the hospital or emergency department.1
When will it get better?
My question is... When will someone ask, why do those patients feel like they can’t go to the emergency room and how do we fix it? This study from the American College of Physicians was done before the new national rules were enacted, regarding pain treatment and chronic pain patients. We have become invisible and muted overnight because of this. The thing about being invisible is you can scream and yell at the top of your lungs and no one will hear or see you; you will not be acknowledged. I don’t think our complaints of pain and suffering are being seen as valid nor legitimate by the masses who treat us.
I have made my share of complaints individually, it doesn’t seem to have any teeth. As a community, we have to figure out how we can be seen, heard, and respected. All we want as human beings is relief from the suffering, and we have a right to demand it. I contemplate daily on how we can see a big positive step on a large scale for those who can’t be seen because there are no will, eyes, or hearts to see us.
Anonymous Poll: Which of these have you experienced as a result of your disease? (choose all that apply)