@thisspoonielife / thisspoonielife.tumblr.com
I LOST THIS AND JUST SPENT THE LAST HOUR LOOKING FOR IT.
So I thought I’d post it in case anyone else wanted it, too.
This is going up on my dorm room fridge so my roommate and any visiting friends will know without me having to come right out and tell them, which shouldn’t be embarrassing to do, I know I’m being a wimp, but it is. I hate talking about my health.
Great list to print out!
This could make things much easier!
Hey, remember that time you got sick and never got better?
Yeah, me too.
It’s wonderful
This reminds me of my husband and I. I drink a lot of tea!
Everything hurts my everything. :(
The age old problem…
My pain levels tonight are awful.
[Image of one bare hand with a hospital bracelet around its wrist, reaching from below towards a gloved hand reaching from above, but the two not meeting. Thanks to Walker and Walker/Getty Images. Photo found at http://www.nytimes.com/2010/08/19/health/19chen.html.]
Last week, my pain had finally been at its all-time high for too long. I had tried all the tricks up my sleeve: entire days of sleep, all the medications (including narcotics) prescribed to me, my monthly injections, massage, ice/heat, exercise, stretches, and meditation. It was a snowy day, so my doctors’ office was closed. Finally, I realized that the emergency room was my last beacon of hope.
As someone who worked for over a decade in healthcare and healthcare reform, I know that some patient complaints are considered to be “ER-worthy” by healthcare providers, when others aren’t. I knew that just because I was going to the ER for pain, my healthcare team’s metrics would suffer a blow; they would be seen as having failed me, and my case would likely be labeled a “missed opportunity” and an “unnecessary expense.” The fact that I went anyway says a lot about the amount of pain I was in, and sadly, that I continue to be in. I have to remind myself that just because medical professionals see this kind of trip to the ER to be a failure of theirs doesn’t mean that I failed myself or them by going. If you have no choice but to go to the ER, and you go, you’ve done the right thing.
In the past couple of years, as a full-time patient and now a part-time blogger, I’ve also heard endless horror stories from the point of view of other patients with chronic pain, who’ve gone to the ER with unbearable pain spikes. Most stories involve endless waits, because pain in those with chronic pain, even when abnormally high, isn’t considered an emergency. Unfortunately, the stories usually include verbal abuse from healthcare providers, and they usually don’t end with pain relief.
I knew that I had no other options than to go to the ER, but I still wanted some reason to be hopeful about the trek. I posted to Tumblr, asking if anyone had any advice or positive experiences from times they went to the ER for pain relief. The responses varied, but the surprising element I found in every single one was that chronic pain patients are only taken seriously in the ER when accompanied by an advocate.
I’m fortunate enough to have a live-in partner, who came along to the ER without a moment’s hesitation. It’s scary to me, though, to hear unanimously that the only times chronic pain patients can be taken seriously with new doctors are when they have backup. Not for the first time, I found myself wishing that this kind of advocate would be available as a public service for all chronic disease patients. In this kind of situation, we’re scared, trying to navigate the labyrinthine healthcare system, battling our illnesses and scary symptoms, and all the while trying to hold ourselves together enough to be taken seriously. Without advocates, it’s usually not possible to do all those things while being taken seriously. I know that such advocates are available in some places, but sadly, they don’t seem to be available around here.
Indeed, when my partner and I went to the ER, even though I did have a non-professional advocate, it took about twenty minutes of conversation with the doctor before the doctor seemed to have it click for him that both I and my complaints should be taken seriously. Infuriatingly, the transition occurred when he found out I have a Master’s in Public Health from a reputable institution. I have a hunch that, without my intelligent partner’s narrative and support, the doctor wouldn’t have taken me and my concerns seriously enough to find out about my background.
I understand that doctors are trying to watch out for drug-seekers. I understand that doctors are scared of symptoms they might not have the tools to alleviate. And I know that sometimes patients in desperately high pain have a hard time tempering our emotions and communicating clearly. But I cannot stand the thought that patients like me are being condescended to, not taken seriously, and not treated, just because our complaint is pain, and just because our reports of our pain are often deemed unbelievable. We should not need advocates, or fancy degrees, to get the care and respect we deserve.
