“Do you think they’ll give me an Americano and vanilla ice cream right now?” I asked my husband, Alex, at 8:00am as we stopped at a local coffee and frozen custard shop on our way to an appointment.
“Like, together?” Alex asked.
“No! Separate,” I replied.
“I mean they have it back there, let’s give it a shot,” Alex encouraged as he turned to place the order.
I visit my rheumatologist every six months. “Visit” is a very generous term implying light conversation and maybe a glass of sweet tea. There’s quite a bit of, what I call, “poking” which includes squeezing, moving joints around, and sometimes poking — more “poking” than you’d want.
If you’re anything like me, there is quite a bit of anxiety surrounding this appointment. My mind races with questions.
“What if she finds something else wrong?”
“What if the appointment is actually on a different day?”
“What if I did something wrong?”
“What if I oversleep and miss it?”
“What if she wants to switch to an expensive treatment?
“What if I’m broken permanently and she can’t fix me?”
Some of these concerns are real, but so much of this anxiety comes from frustration. A frustration that at 16, at 21, at 26, at 30, I’ve had to interrupt my day and my life to visit a doctor for a chronic illness.
I have had three rheumatologists since my diagnosis. There was some trial and error, which I’m sure I’ll write about later, but these three have been truly helpful on my journey and willing to listen to my concerns and wishes. They’ve worked with me to find the right medication and point me in the direction of helpful medical assets.
There are some tremendous resources on how to make the most out of your appointment here, here, and here, but that is not what this article is about. I want to talk about ways to make the most of your day when you have an appointment. I want to discuss how I’ve been able to turn what could be a dreadful day into a lovely memory.
Reflect on how you’re feeling
On top of your list of current medications, any illnesses since the last appointment, symptoms, reactions, etc., take some time to journal the day prior. When you have a few minutes of quiet time, grab a journal or your favorite notes app, and jot down any thoughts you have about your upcoming appointment. Taking time to do this will allow you to clear your mind as well as some of your nervousness, and bring concerns or questions to the surface that you might want to address with your doctor. These are often thoughts you may not have had if you hadn’t sat in silence.
From ages 23–28, I was seeing a rheumatologist who was an hour from my home. On those days, I would take a quiet, familiar, country road to the clinic. It added a few minutes to my normal trip, but gave me peaceful time to think. In addition to journalling the night prior, this drive brought some stillness to my trip.
Know that this is what you’re doing that day
I can’t even count how many times I thought, “Oh, I’ll just pop over to the rheumatologist and then get back to work.” It is not that easy. I’m fortunate enough to be able to reserve my day for an appointment, and I know that not everyone can do that, but if you can, I would encourage you to.
Beyond unpredictable wait times, a simple check up can balloon into lab work and x-rays, adding hours to your trip. If you have to travel far, road conditions can cause major delays. By giving yourself a little space and time you’ll be able to alleviate much of your anxiety and annoyance.
Let’s say that you don’t have to wait. There are no labs, no x-rays, no traffic, no surprises. Door to door it takes only two hours. You’re probably sore from all the “poking” or have depleted energy from the mental, emotional, and physical effort you just put into making the appointment productive.
Go easy on yourself, don’t expect too much.
Have someone drive you to and from
Aside from a brief stint when I was 25, I have always relied on someone else to drive me to and from my appointments. When I was first diagnosed at 16, it was my parents, and when I was in college, this person was my boyfriend, now husband.
I’m sure I could have driven, but wanted to ensure that I was safe on the road. Often I will leave an appointment with soreness, and the idea of driving two hours, or even 20 minutes, is excruciating. Not to mention the mental burden I often feel on the way to or from, which can be as distracting as a physical obstacle.
Communicate with your person
You might have someone who is dropping you off, but I’ve always had someone join me in the waiting room. It’s a fantastic distraction and honestly makes me feel like I’m not alone in this whole journey.
However, I do like being in the exam room by myself. When I was first diagnosed, I was entirely too quiet with my doctor, I let my parents do most of the talking (my father has dealt with a chronic illness for most of my life so they have plenty of experience). I was grateful that they could advocate for me during that time when I was unwilling to face my disease.
Over time though, I learned that by letting them talk for me, not only was I giving up my ability to be an advocate for myself as an adult, I wasn’t coping with my illness. I wasn’t taking it seriously enough because I wasn’t talking about it, and therefore treatment seemed unnecessary and would go untaken. I got a lot worse before I got better. Several years later, I told my parents that I wanted to visit with my doctor myself, and that is really when I started owning my RA instead of it owning me.
Leave early, arrive early
I’m late. A lot. I blame it on the fact that I like to use every minute of my day. So if I have 15 minutes until I need to leave for my appointment and there is a stack of dishes, I will do those dishes up until and often past the time that I need to leave.
The shorter and more familiar the trip, the later I will be. I lived an hour and a half, and then two and half hours away from my first rheumatologist, and I was never even close to being late. I accounted for tolls, road work, restroom breaks, and gas stops. However, when I lived less than an hour away, and then just 20 minutes away, I was incredibly rushed and late on a regular basis. The panic of being more than a few minutes late to an appointment and having to reschedule for another day is real.
On a more recent visit, I was a mere 30 minutes from the doctor’s office so Alex and I left 40 minutes before the appointment. I had forgotten how many obstacles there are to get into the actual office. First, we had to drive into the city from the suburbs where we were staying at the time. A total mess. Then we arrived when everyone at the clinic was coming in for work, jamming up the parking garage. Finally, we got into the building and had to fight with finding the right elevator to take up to the office. I’ve never been so out of breath and red-faced upon arrival anywhere. We quickly learned that 40 minutes was not enough time.
This is most certainly one you’ve heard before. Share not just how your body is feeling, but how you, as a person, are handling the disease. This is one that took me awhile to accept and practice. “This person is my rheumatologist, they are here for me medically, why do I need them to provide emotional guidance?” I would ask myself. It isn’t so much emotional guidance as it is being honest with them about your concerns, how you’re feeling about your current mediations and symptoms, and what your future plans are.
I take New Year’s Resolutions very seriously. Several years ago I made the resolution that I would improve my health. I was in such pain each day and knew that couldn’t continue. During this time, I started looking into devices, products, and dietary changes that would help my body and my soul. I also wanted to cut back on unnecessary medication. I communicated this desire to my doctor and he provided me with resources and guidance, some medically proven and some anecdotal evidence from past patients, that I wouldn’t have found on my own at that time. This showed me that medicine was not the only path toward improvement with the disease.
In 2018, Alex and I moved into an RV with plans to travel the country indefinitely. I met with my rheumatologist and she made sure that I was on the proper medication that I would be able to access at pharmacies in the largest cities on the east coast and the most rural towns in Wyoming.
Treat yo’ self
It was 8:00am in the morning on a Monday as we were making the 30-minute drive into the city for my rheumatologist appointment. It was rainy and humid, not a great start. We approached a small coffee and frozen custard shop with a drive-thru window. I was about to get “poked” so I wanted something other than my usual Americano. There I was with a nice, thick swirl of vanilla custard and the excitement of a child.
I saw the same rheumatologist from the time I was diagnosed at 16 until I was 23. He was the only rheumatologist in the state who would see someone under 18. Until I left for college, my parents and I would travel an hour and a half, one way, on a toll road to visit him. We would spend the whole day in the city and always stop for Starbucks at a rest area along the way. We didn’t have a Starbucks yet in the small town where I grew up so this was a real treat.
Once I was in college, Alex and I would make the trip, now two and a half hours, one way, on that same toll road. We found a pizza shop with gluten free dough and beer that quickly became a tradition. I still miss that pizza shop from time to time.
Now we live much closer to my rheumatologist, when we aren’t traveling in the RV, but we still stop for a coffee and something sweet. If you don’t feel up for actually doing something, then just lounge around your house with a favorite book or movie, drink some wine, do whatever brings you delight. Treat yo’ self.
Reflect on how you’re feeling, again
That journaling you did before your appointment? Do it again. The appointment can be a whirlwind. Take some time to yourself that same day to record your thoughts and feelings. You may want to jot down some notes and instructions from your doctor, but I also encourage you to create some personal goals for yourself. What do you want to accomplish before you go back for your next check up? How do you want to feel? What can you do to get there?
It can be a long day, but that doesn’t mean that it can’t be joyful.