How is it that at every single appointment I have with a
doctor, I feel terrified, afraid I’ll say the wrong thing, afraid I’ll say
something the wrong way, afraid if I ask about a specific diagnosis or
medication I’ll make myself sound like a hypochondriac or a drug addict and
destroy my chances of getting any actual help? Why do I always feel like I have
to lie, I can never actually be honest, ever? How is it that after every single
appointment I have with a doctor, I feel violated, dismissed, invalidated, the
same way my narcissistic mother made me feel as a child, like I’m a useless,
selfish brat making things up for attention and bothering everyone? Why do I
need a good cry after every single appointment I have with a doctor?
Why do doctors have to be like this?
I’ve been sick for over five years, and it’s gotten worse
over time. My symptoms are not complicated, but apparently they don’t precisely
match any single common diagnosis.
My symptoms come and go. A few months ago I started keeping
a daily log of them, so I could give the doctors more precise information. I’ll
typically have 1-3 weeks of feeling more or less fine, then 2-4 weeks of:
- intense fatigue, like I’ve been drugged all the time; it’s
almost impossible to get out of bed in the morning; I fall asleep at my desk at
work and I’m too tired to play video games at home; my body feels like it weighs
a ton and I can hardly move
- headaches, lightheadedness, brain fog; difficulty concentrating, difficulty
- a low fever that comes and goes throughout the day, just enough to make life
more difficult, usually paired with chills
- terrible joint pain, especially in my knees, wrists, shoulders, and jaw,
sometimes in my hips, and generally in any joint that gets any use; the pain is
worst in the afternoon and evening, after I’ve been up and about all day, and
it’s lightest in the morning after I’ve been lying in bed all night
- shortness of breath whenever I do even the slightest physical activity, from
taking a walk to going up the stairs to simply getting out of a chair; sometimes
breathing is even painful
All of these symptoms are far worse in the summer when it’s
hot out, especially if I go out in the sun, which irritates my skin.
My knees hurt more and more all the time, even in the light
periods between episodes. Recently my knees have started making clicking and
crunching noises when I go up and down stairs. Now and then my kneecaps get a
bit swollen, like there’s a bubble of liquid under the skin, and I have trouble
walking at all.
The first doctor I went to with these symptoms was an older
man. He told me it sounded like anxiety and to see a psychiatrist. If my knees
hurt so badly, he said, I should stop going up and down stairs, stop taking
walks, stop using my knees. That was the end of it. No tests, no specialists,
The second doctor, an older woman, said roughly the same
thing. Sounds like anxiety. Go to therapy. If your knees really hurt, we’ll
send you to an expensive alternative medicine practitioner who will charge you
for 45 minutes what you earn in a day and try to sell you all kinds of expensive snake
oil nonsense. That was the end of it. No tests, no specialists, nothing.
At long last, after wasting several years and a terrifying
amount of money on nothing, I found a new doctor. A young woman. My new GP. She
listened to me. She never said the word “anxiety”. She never asked
about my mental health at all. She took careful notes and asked a lot of
follow-up questions. She was concerned. These symptoms could be quite serious,
she said. She wasn’t sure what it might be, but we needed to do something about
it. She sent me for blood tests immediately to rule out a simple vitamin
deficiency or a few common infections. They all came back normal aside from my
vitamin D, which was low (but not low enough to cause these problems), and she said to start taking a supplement (which I did).
She said the next step was to go to a rheumatologist. It
might be something autoimmune. She warned me that it might be a long road to a
diagnosis, and that I shouldn’t get my hopes up too high, because anything that
might cause these symptoms is likely to be chronic. But she hoped we would at
least find an answer.
I love that woman to death. I will never go to another GP.
At age 34, I had found a doctor who listened to me, took me seriously, and was
genuinely concerned and interested in helping me. For the first time in my
life. At age 34.
She sent me to a rheumatologist. It took me 2 months to get
That appointment was today, and now that I’ve had my good
cry, I need to write down what happened, because I still can’t believe it.