Have you ever seen the training videos for retail workers about the dangers of repetitive motion injuries? They came to mind the other day after a recent experience switching medications to treat my ankylosing spondylitis.
Managing ankylosing spondylitis – or any chronic disease – is like the momentum of a repetitive motion injury, but worse. Chronic diseases come with a slightly different package. With enough rest and care, a repetitive motion injury can heal and go away, but chronic (read: always there) diseases have no cure.
To get a new specialty prescription I must call my doctor, health insurance company, drug manufacturing company, and pharmacy multiple times over several days (or weeks) to finally get the medication in hand. Often guesswork determines who to call next because as a patient I don’t know where the process has stalled. It feels a bit ironic for me to be the last to know. I hear things like this on the phone:
“We’re still waiting on authorization from your insurance company. They told us last Friday they need more information.”
“Follow up with your doctor, that’s faster than if we at the pharmacy do it.”
“We’ve already handled that, call the pharmacy and tell them we sent that form yesterday.”
“That’s where your doctor faxed the prescription? It’ll take weeks for it to get to us from the distribution center. Have your doctor fax us the prescription directly.”
“Oh, we sent that yesterday to Walmart pharmacy” (You WHAT? My pharmacy is WalGREENS!)
“You didn’t get your overnight prescription yesterday? It looks like the package wasn’t prepared in time to ship out the same day you ordered it. Would you like to reschedule the order now?” (Um…couldn’t you have just sent it the next day and notify me of that without having to reschedule the whole order?)
A month later I’m finally using the new drug. While waiting, I wasn’t treated at all for my condition for several weeks.
Like many low-wage retail workers stuck in mundane jobs, chronic disease patients have no choice but to continue plodding along, repeating the same tasks with no vacation. It becomes mundane, yet simultaneously the process of repeating actions over and over again causes unignorable aches and pains and a general dislike – even anxiety – for certain activities. PTSD causes physiological responses to expected outcomes that may or may not become reality. Fight or flight makes our heart rates increase whether the danger is perceived or real. Therefore it becomes our nature as chronic disease patients to preemptively react to what we’ve experienced so many times before. And we expect multiple hoops through which to jump, so we resist even stepping onto the obstacle course. Picking up the phone hurts.
If I had to go through the particularly frustrating and time-consuming process of getting a prescription filled just once per year, this hassle would be a minor nuisance in the grand scheme of things – after a brief gripe about it on Facebook I’d soon forget about the experience. For healthy people these issues are manageable because they happen rarely and, once tackled, go away and are forgotten. They are significant and frustrating, but short-lived.
With chronic sickness, life is built around a continuous build up of these minor issues; so much so that they become things that have to be babysat and monitored daily. We’re not getting paid to make all the phone calls, but if we don’t make them no one else will and our health will get worse. It’s draining, both physically and mentally. We like to claim that we are not our diseases, but it often feels that we become our diagnoses when our daily schedules revolve around doctor and lab appointments and phone calls; and when our alarms beep to remind us to take this pill or that shot.
We stare with fear at our ever-growing list of providers and agencies we have to call. We have diagrams and spreadsheets and post-it notes and piles and piles of medical-related papers that help us manage an uncoordinated plan of care that we know is unfair for us to have to manage ourselves; and where’s our paycheck? Sometimes it gets bad enough that we receive a third and final bill in the mail before we have the guts to spend two hours on the phone challenging it and finally paying it. Every day we wake up to the normal aches and pains in our bodies, and on top of that the hassle of managing everything that is supposed to manage our diseases. The medications, the appointments, the bills, the constant hassle to get everything right.
When healthcare threatens to define life is when you realize what being sick really means.
And many of us want to give up. Some of us do. We take “vacations” from dealing with everything because we get so tired of managing this dominating aspect of our lives – we didn’t ask for this. We get tired of being told we need to call the person we just talked to, who told us to call who we’re currently talking to (“Mom, can I have ice cream?” “Go ask your dad.” “Dad…?” “Go ask Mom.”). We get tired of telling the same story over and over again until we find the right person to help us. We get tired of spending hours on hold and in waiting rooms, occupying our roles as sick people, putting our sickest foot forward in order to get the treatment we need. We grow tired of having to explain in cellular detail the most excruciating symptoms we feel – the same symptoms we spend so much energy trying to mask elsewhere – for doctors to treat us adequately. The squeaky wheel gets the grease and doctors treat hundreds of patients a day: those who scream the loudest will receive the most care.
So don’t call us lazy. Please don’t think we are neglectful. We never get a break. We spend collective months of each year on the phone. And collective months at various offices to coordinate our care. And weeks or months in bed trying to physically survive and make life mean something more than existence. And we’re tired.
We’d like to quit, but we can’t.
And we won’t.
We just want you to understand how hard we fight.