When Doctors Confuse Physical Symptoms for Mental Illness
Patients who experience chronic pain from rare diseases are often given misdiagnoses of psychiatric conditions or called “mental” simply because doctors do not understand the mechanisms of our diseases. Being denied proper medical care and being invalidated (and sometimes even insulted) by a doctor’s misunderstanding of our disease can actually makes dealing with the chronic illness and pain even harder.
Prior to receiving my Ehlers-Danlos syndrome, IBD-related ankylosing spondylitis and spondyloarthropy diagnoses, I had spent decades listening to doctors tell me that my pain was “mental” and “all in my head” and that I was only sick “because I wanted to be sick.” I knew they were wrong about me; I knew there were real medical sources of my widespread, chronic pain.
After taking my care into my own hands and researching my symptoms, I finally learned I had Ehlers-Danlos syndrome (EDS) from a geneticist specializing in connective tissue disorders. EDS is a condition caused by defects in the collagen that holds together my body. As a result of this collagen defect, my joints are hypermobile, and my body experiences ongoing tissue damage which causes the ligaments, tendons, and tissues to become lax, losing their elasticity like an overused rubber band. Because of this ongoing damage, I experience partial-dislocations of my joints, nerve compression, joint dysfunction and degeneration, and chronic pain.
My conditions are rare and complicated. Every time I go to a new doctor, I take a risk. I risk the doctor will not understand the tissue and joint damage, nerve compression, and chronic inflammation. I take a risk the doctor will not understand that my hypermobile joints are a sign of damage to my ligaments and other structures holding my joints together. I take a risk the doctor will declare me “mental” because they don’t believe I have any damage in my tissues signaling my brain to feel pain – they will comment that my pain is “all in my head” and deny me further medical care.
Last week was a great example of how doctors’ misunderstanding of my diseases results in diagnoses being used as insults and as a reason to deny me basic medical care. I went to a new podiatrist in order to have my previously diagnosed posterior tibial tendon dysfunction followed. Getting to my previous podiatrist was a challenge due to mobility issues. So I took a risk, and found a new podiatrist I could get to more easily.
I know from experience that when doctors do not understand my underlying conditions, they either 1) ask questions, validate the conditions, give me encouragement, applaud me for dealing with the pain, give me suggestions minimizing the pain, and follow the progression of my condition so they can assist whenever and wherever possible or 2) start blaming me for the pain, and use common misdiagnoses for my rare diseases in an attempt to deny me any further medical care.
While I waited for the doctor, I removed the support wraps I apply to my ankles to reduce the hypermobility and abnormal movements of my ankles, and my socks. I hung them over the side of the walker I must use to reduce the pain from my joint degeneration and dysfunction in hips, knees, ankles, and SI joints.
He came in, and without introducing himself, just started firing questions at me about my allergies and previous surgeries. He then fiddled with my feet some, pressing on the inside of each one — right on the nerve which is causing the pain. I winced and pulled my feet back from him in response.
“You have tarsal tunnel syndrome. It’s like carpal tunnel syndrome — but in your ankles — not your wrists,” he declared.
I held up my wrists and showed him the braces I wear to reduce the carpal tunnel syndrome resulting from hypermobility in my wrists.
“Yes, just like that!” and then he continued. “There is nothing we can do for this type of pain. I could cut open the inside of your ankles and release the pressure and compression of the nerve. But then you would develop scar tissue, which could just make the problem happen again.”
I nodded. “And I have atrophic scarring associated with my Ehlers-Danlos syndrome, classical type — so that would most likely be the case. Is there anything I can do to improve my mobility and reduce the pain?”
“No, there is nothing that can be done. It will improve when you rest, get worse when you walk. It will never go away,” he responded.
I thought to myself, “this is where the true test of this doctor begins, when there is nothing he can do for the patient.” “Will he choose option one — encourage me, give me suggestions, and follow the progression of my symptoms? Or will he take option two — find some way to blame me, invalidate me, and deny me care?”
The roll of the dice began.
He then reached out for my feet again. I made a face, mentally preparing myself in case he pressed on the nerve and caused me pain again. His hands shot back, like my feet were poisonous.
“You have something mental.”
Option two, then.
I looked at the door he left ajar, remembering I could hear his conversations with other patients and realizing other patients and staff could easily be listening. There was nothing I could do but let the dice roll play out.
He continued, “You just winced in pain before I even touched your foot — that indicates your condition is mental.”
“I was preparing myself in case you pressed on the nerves again. I do not like pain and I don’t like people touching my feet,” I replied.
“You are at the podiatrist, you have to get over that,” he said, laughing at me.
He then launched into a 20-minute spiel about how I don’t have a reason to be feeling pain, clearly not understanding the tissue damage caused by EDS, and that my mind is making me feel pain.
All I could do is sit there, looking at my feet, waiting for him to finish his tirade. I started counting how many times he used the phrase “you are mental.” I lost count at 15. I started wondering if he was even going to finish the exam, now that he had spent the majority of the office visit calling me “mental.” I mused over the irony of a podiatrist acting like a psychiatrist as a way to avoid doing podiatry.
When he finished, I simply asked, “So, is there pressure on those nerves causing pain — do I have tarsal tunnel syndrome?”
“Yes, but I don’t think the pain is coming from your feet.”
My mind reeled from the contradictions in his response. So, I reworded the question as my response.
“It couldn’t be the EDS, the flat feet, the pronation, the subluxations, the posterior tibial tendon dysfunction?” I asked again.
“It could be, but I think the pain is coming from somewhere else,” he responded.
“OK, where exactly do you think the pain is originating then, if not from those structural and medical conditions?” I questioned.
“I think you have a deep-rooted psychological issue causing your pain. You have something mental,” he said.
“And the reason I cannot lift my heels and stand on my toes is not my previously diagnosed posterior tibial tendon dysfunction progressing?” I asked.
“No, it is something in your brain telling you that you are going to feel pain — it is psychosomatic. The other podiatrist was wrong; you don’t have anything wrong with your tendon – you are mental.”
He never had me walk, never took X-rays, never completed the exam. He just decided to call me “mental” and did not even book a follow-up.
My geneticist has recommended my posterior tibial tendon dysfunction be followed on a regular basis, as it is a big issue for people with EDS. But, what was I to do? This doctor clearly formed his own opinion of me. I wondered how much his negative attitude and my being female played into his opinion.
I smiled, thanked him for his opinion, paid my copay, and left. When I got home, I cried. I cried because I realized this was something I would have to deal with for the rest of my life — if the doctor cannot understand my rare conditions, then I could be called “mental.”
I wiped away my tears and picked up the phone. I made an appointment to see the original podiatrist again. He is further away and I have to arrange a ride with others to get to his office, but at least he understood EDS and treated me like a human being.
At this point, I will never look for a new podiatrist again. I will go into new doctor’s appointments understanding that I’m rolling the dice and the risks involved. I will not let a doctor’s opinion influence my self-esteem, self-confidence, nor allow it to hinder my medical care.
Dealing with chronic illness and resulting chronic pain is a daily fight for sanity I am learning to accept. I have to work hard not to let my conditions overtake my identity and to not let the pain overtake my life. This daily struggle is made significantly harder when medical “professionals” use diagnoses as insults and refuse patients the most basic medical evaluation and care — not to mention basic human dignity and respect.
This is an issue I am not alone in facing.
For all those out there who understand the dice roll associated with seeking medical treatment of rare, chronic conditions, I have a few words of advice:
1) Be prepared, mentally, for the dice roll. It could go either way — this is your chance to learn about the provider.
2) If a doctor is speculating about your psychiatric state instead of focusing on their area of specialty, or if the doctor is ignoring facts about your established medical conditions, just walk away. They are not the right provider for you. This way, no matter what the results of the dice roll, you always gain information that makes you stronger and wiser.
3) Never let the opinion of those who are ignorant alter how you view yourself. Their opinion of you says more about them than it does you.
4) Stay strong. Never give up. You will find the right provider. You will get the right medical care. Just stay persistent and know you are worth the effort.
5) As people with rare diseases and chronic illness, our lives involve more learning than most. This fact gives our lives additional inherent value. Learning how to apply the information you gain with compassion is the ultimate expression of gratitude for your life.