Don't Leave Me Hanging on the Telephone
Ever since I was first diagnosed with RA 22 years ago, I've had problems--big and small--regarding communication with my healthcare providers. Or maybe a lack of communication is a more accurate way to put it. I've experienced an incredible amount of miscommunication and just plain bad communication from clinics, call centers, receptionists, nurses, assistants, schedulers, pharmacists, technicians, and doctors themselves.
Managing RA requires constant communication with doctors
When you have a chronic illness such as RA, you're often forced to be in contact with your providers and clinics a lot. Nearly all the time, I would argue. I feel like I practically live on the phone with mine, which is depressing when I think about it. But how are you supposed to make an appointment or get an important prescription filled if it takes forever for someone to answer your message or call you back?
Frustations with coordinating a medication refill
The weekend after Thanksgiving, I just about "lost it" after a frustrating week of playing phone tag with several different nurses and I don't know who else. I was due for my monthly refill of hydrocodone (opioid pain medication) at the end of the month, and I was worried there would be problems getting it because of the Thanksgiving holiday falling in the same week. I decided I better start the process of bugging my pain clinic early so I wouldn't have trouble getting my prescription on time.
A notorious procrastinator, I prided myself a little bit that I was being organized and early about taking care of getting my refill. But maybe I jinxed myself, or congratulated myself too soon, because it all turned into a big mess.
Monday: In the morning, I sent my pain clinic provider a MyChart message, saying that I was due for my monthly hydrocodone refill at the end of the week, and I hoped there wouldn't be any problems because of Thanksgiving.
Tuesday: No reply.
Wednesday: No reply. I wound up calling the clinic at the end of the day to confirm if they received my message. After waiting on hold an irritating length of time, I finally spoke with a nurse. She told me that my MyChart message had been received and seen, but the provider hadn't gotten it yet, for some reason. To me, it sounded like someone dropped the ball and didn't pass it on to her, but the nurse didn't say this in so many words. I repeated my request and my fears about not being able to get my medication on time because of the upcoming holiday. She (seemingly) listened, then assured me that it would get taken care of and that I'd hear back from the clinic on Friday.
Thursday: Thanksgiving Day. I ate too much food and lay around too much and naggingly wondered: Are they really going to call me back tomorrow? Then I passed out early.
Friday: No reply, no phone call. No MyChart message. Nothing. I should have called the clinic again, but I felt unwell and basically slept all day and into the evening.
Saturday: Still nothing. I decided to call my pharmacy that morning to see if my prescription had been sent over anyway and someone forgot to call me. That's happened in the past. Nope, no luck. Nothing had been sent to the pharmacy. I hung up the phone with a sigh and realized that I would need to call the on-call physician. I had no idea how long this would take, how it would work, or how it would go in the end.
Inefficient communication takes up time & energy
Finally, after about SEVEN hours of messing around on the phone with the on-call nurse line (calling and waiting), I picked up my hydrocodone refill from CVS around 4:30 pm. But I had begun this ridiculous phone marathon at 9:30 that morning. That's seven hours wasted from my day. That's me afraid to take a shower, eat food, or go to the bathroom all day because I'm scared I'll miss a phone call. That's me growing more stressed and infuriated by the hour, the minute, and then the second. That's me becoming hugely tempted to scream and swear at the nurse, slam the phone down, and never make another medical phone call again.
Communication isn't always this chaotic
But I can't do any of that swearing or screaming, no matter how much I want to. My RA, health, and life depend on staying in regular contact with my providers and medical team. Plus, not all healthcare employees are terrible at communication all the time. Appointments get made, questions get answered--it's not total chaos. But it's those times when the wires snap and everything goes horribly wrong that raise my blood pressure to boiling. Livid questions fill my head: How can you make such mistakes? Can nobody do their job correctly? What's the point of me even trying?
Added stress from miscommunication isn't helpful
I must keep trying, of course, because the pain and disability of RA forces me to do it. Besides, I want to take care of my health the best I can! However, RA alone is a nightmare to deal with, so I don't need any added stress caused by poor or ignorant communication from people who are supposed to be helping me.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?