Over the weekend, I read some stories from my fellow RSD warriors that actually made me sick to my stomach.
I’ve been very fortunate in my care, even with all of the screw-ups. I live in a major city with access to doctors and hospitals that meet my needs. Pretty much 45 minutes in any direction. Far too many face their battles hours from any proper care, sometimes a day’s travel to their appointments.
So when emergencies strike, as they did for some over this past week, it sometimes involves a trip to the E.R. Some might think it’s no big deal, beyond the time one usually has to wait. But for an RSD patient, a trip to the E.R. can be truly dangerous, demeaning and sometimes deadly.
Rough handling of patients, especially with RSD-affected limbs like mine, can be brutal. No blood draws, no blood pressure and no needles of any kind on my left arm. Searing pain that escalates without proper control. And one of the hardest: being labeled a drug addict, that you’re only there for a fix. I’m not even sure what analogy I can make, that compares to being called a drug addict, when you’re not one. When you are there for help at an off-hours time, when your doctors aren’t available. For the chronic pain patient in the midst of a crisis, being labeled this way is humiliating, off-putting and simply unfair. When we are labeled, our care becomes less of a priority, we’re shelved as non-emergent. And that is WRONG.
I’ve been labeled an addict twice in my RSD life. Once was in the office of a truly rotten doctor – who ended up running off one weekend to marry someone he’d apparently just met. According to his office manager, he ditched his entire practice without notice! During our brief time together, he never spoke to me, just about me, while I was sitting in front of him. He told a medical student that if I’d, “Get up off (my) ass and move around, and stop eating bonbons (no joke!),” my “limbs would cease to be swollen.” Wow! Thank you for that groundbreaking medical opinion! That was just prior to my lupus diagnosis – by a far better rheumatologist.
The second was in a pharmacy. I’d brought in a prescription and had it tossed back at me with nasty words to the effect of “We don’t do this. You need to go to the free clinic,” spat at me like venom. Like I’d brought a flesh-eating virus to her counter. I was mortified! Grounded to the spot where I stood, the spell was only broken when one of the pharmacists intervened and reprimanded her. Even if I did need to go to the clinic, she had NO right to treat me that way. Can you imagine how many people have come through those doors for medicine only to be degraded and made fools of? It breaks my heart. And drug abusers are people too, clearly in a crisis state. Do they deserve to be treated as sub-human? No, they don’t.
The unfortunate thing, however, is that when you’re taking controlled substances for pain management, you’re put under the same umbrella microscope: Chronic pain patients and drug abusing patients. Dumped in together, by far too many people. Judged the same, by far too many people.
Having care denied for any reason is unacceptable. Having it denied because of an assumption? It’s criminal, in my opinion. People suffer needlessly, are punished for their diagnosis. And by their diagnosis. RSD pain for me has been nagging, explosive, sore, sensitive and being-thrown-on-a-barbecue-grill burning. Imagine having that pain all over your body, with no relief. Arriving in the E.R. only to be denied your medication because you’re “clearly an addict,” or a “user.” There are no words to describe it.
What’s the solution? What are your ideas to make it better? Please feel free to comment.
I’ve been thinking about what might improve our chances when in the E.R. for emergency pain relief. I’ll share them another time.
Meanwhile, countless warriors arrive again for help, only to battle bureaucracy and prejudice, with no relief in sight…..
Peace and painlessness,