I'm Seeing My Doctor, And I Wish I Felt Worse Today...
In the weeks and months leading up to my infrequent rheumatology appointments I try desperately to keep track of all of the questions I want to ask him, and all of the new or weird symptoms I want to talk to him about.
The months before my last appointment my elbows had been stiff and swollen. To a point where my sister noticed and asked me “what’s wrong with your arm?” without even knowing I’d been in pain.
I had pain in my hip when I walked in a really specific spot that I want to show him.
I’d been having back spasms regularly that left me hunched over, unable to stand up as I just waited for them to pass.
I thought my appointment could bring answers
My list of common pains and concerns that I wanted to share with my doctor had grown to be substantial in the months since my last appointment, and I was optimistic that appointment day would provide me some answers.
But as the appointment comes closer the symptoms start to fade. I’m partly ecstatic, but partly disappointed. Maybe the diet changes, exercises, and things I’d been doing to take care of myself were helping- but now how will I prove to my doctor how much pain I’m in?
It sounds silly - having to prove my pain. But that’s how it feels. If I go into an appointment and say “I feel awesome!” they tell me, “Great! Keep doing what you're doing! See you in 6 months!”
Just because I feel good today, doesn't mean I will tomorrow
But then what about all of the time in between when I was in tears because my elbows were swollen and hurting? What about the times where I just sat on the kitchen floor waiting for a back spasm to stop so I could get back up? How will my doctor be able to help me with that if he can’t see it for himself?
When I wake up the morning of an appointment and feel great I immediately start to feel like a fraud.
“I feel fine today; maybe I’m better and I don’t need to complain about all of my symptoms?” I wonder if it was something else I did that caused my pain and maybe it’s unrelated to my AS.
"I wish I felt worse today"
Flipping this mentality is SO HARD. I know what is causing my pain, and I know that I need the help of my rheumatologist to fix it. I hate that I wake up on appointment days thinking “I wish I felt worse today…”
That seems to be the case with everything. Every appointment I go to because something is wrong, I’m miraculously feeling okay on the day of the appointment. But I still have my list. My list from the past 6 months of all of the concerns and complications I’ve had. I need to vocalize my list and remember that I don’t need to be harsh on myself for feeling good today.
No matter what, my symptoms are real
Living with a chronic illness I have found that I have to silence the voices telling me that maybe I’m faking, or maybe I’m being over-dramatic. If my elbows were swollen and bothering me for months, there’s a very good chance that the pain will come back. There’s also a very good chance that the pain isn’t random, and that it’s a result of the chronic joint inflammation that my AS causes. I have to always advocate for the symptoms I feel on my bad days even if I’m having a good day.
I’m not sure the thought of “I wish I felt worse so I could prove how much pain I’m in” will ever go away, because I think seeking validation for our feelings is human nature; but I need to remember to enjoy the pain-free days, and always advocate for myself and never ignore the questions and concerns on my list.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?