Be The Boss of Your Next Appointment
You are the boss of your ankylosing spondylitis!
Nobody, and I mean nobody, knows what it’s like to live with your AS, sleep with your AS, treat your AS, and continue to live another day in your life with AS. But, for some people, there is someone who tends to think they know this AS life better: your doctor.
Sure, they went to school. They had very nice textbooks and heard lectures from qualified professors. They might have even done a residency at some top hospital. But, let me tell you...When it comes to the daily in’s and out’s of living life with ankylosing spondylitis, you are the bigger expert.
Now that I have hopefully gotten you pumped up with chronically ill confidence, let me lay down some advice on how to be the boss of your next appointment.
Know why you are there
This may seem a little silly at first. You know why you are there. You have ankylosing spondylitis and this is a rheumatologist who (hopefully) treats ankylosing spondylitis. It seems like a perfect fit. But, I ask again… Why are you there?
Ankylosing spondylitis isn't just a rheumatic disease that mainly affects the spine. It is so much more. Inflamed eyes, sleepless nights, enlarged heart, respiratory issues, and a pain level that is one tick away from childbirth!
Have a goal
What I am saying is to be specific and have a goal for your appointment. A doctor might only spend 5-10 minutes with you, so get the most you can out of them. Tell your doctor which symptoms are bothering you the most. Share any concerns you have about your treatment plan. Have a focus and keep them on task.
Last month when I saw my rheumatologist, I wanted to talk about treating my stress. My biologic is working well enough, and my DMARDs seem to be doing the job. But, I knew my daily stress was doing more to harm me than my spine was. So, we focused on stress. He was accepting of this topic and we worked together to form a plan to cut back on stress-related pain and cardiac issues. I left happy.
If all you want out of an appointment is to get your prescriptions signed off on, that is 100% ok. But, if you don’t come in with a goal in mind, a 3-month follow-up is all you will probably get.
Dear diary… I hurt!
Be the boss of your personal story with a diary (or journal). I started this for my Lyme doctor, but it has since helped me in all appointments from my PCP, to my rheumatologist, on to my physical therapist.
Daily (seriously, daily) I write down how I’m feeling, pain level, what meds I took, contributing factors (like “helped a friend move” or “watched movies all day”) and weather changes. If I think it is important to my symptoms, I write it down. I also flag the page where I switch treatments for easy reference. This way, when my doctor asks, “How have you been the last 3 months?”, I can tell them!
Believe me, due to my brain fog, I have no memory of how I was feeling a particular day, or if I ever felt good. I have gone into appointments thinking everything was fine, but then I look at my diary and remember for a 9-day stretch I felt I was on death’s door, and that happened to include my off week from Humira.
Stuff like this is an additional insight into what your treatment plan should look like. If you have had 50 days with a pain level of 8/10 since starting a new drug, you can show your doctor with hard facts that it is not working. Plus, the more papers and notes you walk in with, the more professional you look. You aren't their average patient. You're the boss of your condition!
Do your research
Probably the hardest part of being the boss, is staying ahead of your treatments by researching what else is out there. Drug trial results are long, boring, and confusing. “250 people were given drug A, while 180 were given a modified drug B, and 150 were given placebo. Of the A’s and B’s 40% experienced this one symptom, 20% another, and blah blah blah.” All you want to know is, “Will this work for me?!”
Unfortunately, everyone is different, what works for one, might not work for you and vice versa. But, this does not mean it’s not worth asking about. Find what is available out there. Go to a virtual or local support group and ask about treatments. Read other people’s posts and see what they say. If most experienced an undesirable side effect, write it down and tell your doctor you're not interested. If you find one people seem to like, ask your doctor about it.
Believe it or not, not every doctor is up to date on every treatment. If you come in asking about specific treatments, you will show that you are taking an active role in your condition, and they will probably give you more attention.
They work for you
Yes, your doctor went to school longer, drives a nicer car, and has a snazzy white coat. But, that does not mean he or she is your boss. They work for you, not the other way around. If you go into an appointment and you don't feel you are getting the attention you deserve, tell them. Don’t ever leave a doctor’s appointment unsatisfied. This is your health, your time, and your co-pay on the line. Don’t waste it.
Hear me out. I'm not saying all doctors will waste your time. There are some amazing doctors out there. And even the pretty good ones get the job done. Just realize that the doctor/patient relationship is exactly that. A relationship. You both are equal partners in the healthcare process. They should be as invested in your treatment as you are. Don’t be afraid to call to give updates or ask for advice. Three months is way too long to wait if things aren't working.
Be the boss
Living with a chronic illness like ankylosing spondylitis can’t always be called “living”. It’s a painful and unpredictable life. When our bodies seem to be out of control, it’s important to have a little control in other parts.
You can play an active part in your healthcare, so take charge and make sure you are getting the best treatment!You can be the boss!
Other than back pain and fatigue, what is the most common symptom that AS patients experience?