Putting Off a Doctor Visit Because You Don't Want to Hear 'It's All in Your Head'
Validation. That’s all I wanted from the doctor who sat in front of me, listened to my myriad of symptoms, and told me she would “get to the bottom” of my pain. I walked out of her office to receive the same blood tests I’d taken three or four times: rheumatoid arthritis testing, complete blood counts, inflammatory marker tests and liver panels. I left that day hoping and needing for something to change.
I wanted one test to come back with the answers to my pain.
See, I’ve been living in chronic joint pain since shortly before my son’s 2nd birthday, and I’ve been living with progressively worse symptoms – symptoms I didn’t know might or could be related to my joint pain – since the birth of my child. My knees were the first to complain, after I kicked a shovel. The shovel won, in case anyone was wondering. I managed to tear the cartilage on the underneath side of my kneecap, which caused the Baker’s cyst in one of my knees to take control of the joint space. Shortly after I got the knee in manageable pain, I lifted a 70-lb. pumpkin, and sprained the other knee. That’s when I learned that my left knee also carries a fun-sized Baker’s cyst. Ever since, I have felt the cysts when tired, stressed or some combination of the two.
I’ve tolerated the pain in my knees, and have lived around a one to three on the pain scale for many years. Every October, however, the pain heightens with the changing weather, and I move back to toting my beloved Pink Rosie (my cane!) around. Comments have always arisen during these times, because this has been when I make phone calls to the doctor.
“Why are you carrying a cane?”
“You’re too young to have problems with your knees.”
“Cartilage doesn’t have pain receptors.”
All from doctors, all who managed to make me feel ridiculous – as if I wasn’t already feeling that way. In my heyday, I could dance, twirl flags, run, skip, hop, jump and walk downstairs. After I injured my legs, I couldn’t walk downstairs for many years, and have only relearned how to walk downstairs in the last two. So, when my knees flared this past October, I put off seeing the doctor for many reasons. Insurance was one, but also… I didn’t want to hear the comments again. I didn’t want to feel like all of this was “in my head,” again.
I waited until my new insurance kicked in, and I waited until I could no longer handle the pain. By this point, I was convinced I had bilateral meniscal tears. Upon examination, my orthopedic doctor was convinced of the problem, too. At least he was, until my MRI results came back negative for any problem. He put me on a drug called Duexis, believing that would stop my complaints of pain.
It didn’t. Duexis made everything worse. On the drug, my ankles hurt, my hands hurt and my knees became so filled with fluid I could barely walk. I called the ortho doc back, and, three days later, a nurse called to tell me I would now be seen by a rheumatologist, because nothing was “structurally wrong” with my knees. The disbelief and anger I felt at being pushed onto someone else made all the doubts come back.
Maybe, just maybe, it was all in my head.
I went off the Duexis to save my joints, but multiple things were occurring during that time. For three years running, every time I’ve come down with a cold, it settles in my chest, and only after multiple rounds of steroids over the course of a few months do I begin to feel almost human. When I saw the RA doctor, I had just begun a new steroid pack (my fifth or sixth since January), and I was on a strong antibiotic. He said, “I see no inflammation in your hands or knees, but that cough is terrible. Can I listen to it?”
Nothing came of the appointment with the rheumatologist, except for a visit to the ENT. After exclaiming, “You’re an allergy patient, for sure!” the ENT put me on a prescription nasal spray. At that time, I was also on a systemic allergy pill, and this new nasal spray became my third allergy drug. At the time, I believed I’d never get my allergies under control, and I believed they were the source of my immunity issues.
The day the antibiotics and steroids cleared my system was my worst pain day to date. I woke up unable to put pressure on my ankles or knees, and my hands hurt so much I couldn’t hold my phone. I felt like I had no other recourse but to eat the cost and go to the ER. The ER doc gave me Tramadol (which gives me insomnia… and I am an active insomniac), and asked me how long my knuckles had been inflamed.
It was the first day I’ve ever looked at my hands and wondered if something was wrong. This was the moment I realized something might be wrong with me, and it extended beyond just my knees.
I asked my twin to send me a picture of her hands. I looked at hers, and I looked at mine. My joints were red, swollen, bent and inflamed, but the blood work had come back normal, as always. I took a picture, which was the best decision I’ve ever made. That picture helped convince my doctor when words could not.
Weeks went by, and I got to the point where I had to lay my phone on my lap to text. I couldn’t write, and I would drop my pen when correcting students’ work. I didn’t want to go back to the doctor; I didn’t want to be told it was all “in my head.” Not again.
My mother asked me to put my pride aside and make the call. She asked me to see her doctor and to tell her everything I’ve dealt with for over five years. I sat in her office, showed her my normal lab results from the RA doc, and begged her to believe me. What I wanted was what I’ve said before: validation. Validation for my pain. Validation for the days I stand up and fall to the ground.
Validation for the years I’ve lived without being able to chase my kid through the park.
At one point, during my visit, I made mention of my right index finger, and asked if it should be able to straighten. She flexed the finger, and mentioned that it straightened when pushed. This was yet another moment that helped me as a patient.
My primary care doctor put me on a drug called Meloxicam, and drew the normal blood work to check for everything that’s always been normal. Spoiler: it was still normal. I felt like I was losing it. I felt tired and defeated when nothing changed in my blood work. My body was inflamed; I had the pictures. Still, it refused to show elevated markers even when I couldn’t straighten my finger.
I was on Meloxicam for two weeks (well, I’m still on it), and several things happened: my joint inflammation went away, I was able to hold my phone in my hand without pain, my allergies diminished to the point where I stopped taking the systemic allergy pill altogether and can now skip my nasal sprays for days at a time, and almost of my fingers began to look normal. I snapped another picture, merged the two together, labeled them before Meloxicam and after Meloxicam, and went back to the doctor with proof in my hand. If my words couldn’t help me, as a patient, and my blood work couldn’t help me, then this picture could.
When the primary care doctor walked into the room, she asked how I was feeling on the Meloxicam, and was openly shocked at how much it had changed my life. She’d seen the “unremarkable” blood tests, and I could see in her eyes that her view of me was changing. She was beginning to see me as all the other people who come in complaining of pain. At that point, I produced the picture. I showed her the before and after, I reminded her of the day I’d asked if my finger should be able to straighten, and showed her that it was nearly straight on Meloxicam.
It was then that she said something which gave me hope: “Jaime, none of this is in your head. Something’s going on, and we’ll figure out what that is.”
As a chronic pain warrior, I have to be my own advocate. I’ve struggled down this route for years, allowing myself to be beaten into disappearing, only to cry myself to sleep in pain. No more. I’ve developed a new system for approaching doctors: picture proof.
This is not in my head. It’s not in yours, either.
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Thinkstock photo via Wavebreakmedia.