To the Doctor I Trusted Who Told Me My Illness Was 'All in My Head'


Starting at the beginning of this year, my fiancee and I moved into an apartment about an hour away from where I was going to be attending school. Now by this point in my life, I had been sick on and off for six years and had been through a gastroenterologist, multiple primary care doctors and a neurologist, so in late spring of 2016 when I found a gastro doctor that actually listened to me and treated me with respect, I was shocked. She listened when I told her I wasn’t feeling well and when the tests she did always came back saying I was super healthy, she would believe me when I said I wasn’t. She was nice to me. She treated me kindly and I really appreciated that.

One weekend when Danielle (the lovely lady who for some reason wants to spend the rest of her life with me) was on a business trip, I started feeling a little ill. Now please believe me when I say that compared to what my body usually goes through on any given day, this sinus infection was like a vacation. Fever? No problem! Can’t breathe out of my nose? Bring it here! Just as long as it’s not nausea. It was a welcomed break from my usual feeling crappy. And I always welcome new ways to feel crappy! Come join the family!

I went to urgent care for my sinus infection and they gave me an antibiotic, and I thought that was the end of it. The next afternoon I became so nauseous I couldn’t move. I didn’t understand what was going on. My nausea pill wasn’t working like it usually did and I was just miserable. I figured I hadn’t eaten enough and went to sleep. The next day at school, I had to sit out of classes the entire day (acting school, very active) because I still felt nauseous. I knew I had eaten enough that morning and in tears called my mom. At this point I didn’t have a car and was stuck in DC knowing I couldn’t handle public transportation.

I got an uber back to the apartment and remember telling Danielle I didn’t understand why the medicine was making me sick, but that I wasn’t going to take it anymore. Just when I thought I had found a solution the universe gave me another problem.

I stopped being able to eat. Not because I was nauseous – I wasn’t, and was actually starving. I was dying to eat something but my stomach wouldn’t let me. I started feeling like all the food I ate wouldn’t digest properly.

I went to my primary care doctor and her advice was, “If you’re dizzy because you’re not eating anything, maybe you should eat something.” Like I hadn’t thought of that. This was on Friday. The previous Monday I was diagnosed with my sinus infection. I had already lost eight pounds.

Since that advice from her didn’t work, the following day I ended up in the emergency room. By now I had lost 10 pounds and was starting to show signs of dehydration. The doctor in the ER told me he could do a CT scan of my abdomen to see if there was anything blocking my GI tract, but that he didn’t feel like it. I left incredibly discouraged and felt like no one except my fiancee and mother could see how I was struggling.

A few more days past and I started getting incredibly weak. I was shaking all the time because my body was so cold and it took a lot of energy to show up. But once I was there, I didn’t have the energy to do what was required of me.

On Wednesday I had had enough. I called my gastro doctor and spoke to her assisting nurse. She told me to go to the ER that my doctor was affiliated with because she was the gastro doctor on call and to tell the regular ER doctor what had been going on. I finally thought I saw the light at the end of the tunnel. I was actually excited about the opportunity of getting an endoscopy done to figure out what was going on. That evening my fiancee and I made the trip to the ER. Now it had been nine days since I was diagnosed with a sinus infection and I had lost 20 pounds. I cried (well, tried to, I was very dehydrated so it came out as more of a whimper) when they weighed me. I felt awful. How could my body lose so much weight so quickly? Why was my body doing this? I thought going to the ER would finally shed some light on what was going on.

I was wrong. The doctor at the ER basically verbally assaulted me. She started questioning everything I said and when I told her my doctor’s assisting nurse told me to come and talk to the gastro on call, she laughed at me. She said she wasn’t going to call my doctor. My sugar levels were low and my oxygen levels were so low they spoke about putting me on a respirator. There was even talk about a feeding tube and with all of that she still wouldn’t call the gastro doctor. She told me she spoke to my doctor and that her nurse never told me to come in. At this point I was actually in tears. I don’t think I said anything else to that doctor the entire six hours we were in there. I felt incredibly violated and mocked and I didn’t understand why I was the target of this doctor’s anger or frustration. They discharged me and said I should call my doctor tomorrow.

 

I called my doctor on the car ride home (4:00 a.m.) and when they called back they let me schedule an endoscopy for the same day. I was still feeling a little deflated but was glad I would soon know what was wrong.

Nothing. The endoscopy showed nothing. I couldn’t believe it when my doctor told me. I remember looking at the scale in the ER the night before, seeing that in just nine days I had lost 20 pounds and asking her what could possibly be wrong with me.

She then told me it was “all in my head.” She told me to see a therapist. She told me I had an eating disorder. I was mad. I was exhausted and I was dumbfounded.

So, to the doctor who told me it was “all in my head:”

I hope you never again have a patient who is counting on you as their last hope. I hope you never have to know what it feels like to have something be physically wrong that you just can’t figure out. I’m not angry anymore. I understand it takes time out of your day to see someone who looks very healthy. Maybe it is all in my head, but I don’t accept that as a final answer. I now understand that what’s going on with my body is not normal. I know you should have tried harder to figure it out. I know I wasn’t wrong in looking to you for help.

When her assistant called to schedule a follow-up appointment I said no.

And, to the patient going through hell,

Keep fighting. I live for the moments when my illness is 10 feet away from me and I have the energy to keep running. I find joy in the times I can come up for a second of air. You’re going to go through doctors who don’t believe you. You might even go through friends and family who don’t believe you. But keep fighting. Hold your head up high and I promise when you can come up for air, it’ll feel good to say “I got through that.”

This post originally appeared on Here’s a Spoon.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via monkeybusinessimages.

TOPICS
JOIN THE CONVERSATION

Related to Chronic Illness

woman standing on the top of a mountain at sunrise with her arms outstretched

Why I'm Sharing the Burden of My Chronic Illnesses With the World

I don’t like feeling vulnerable and I’m not good at opening up. I firmly believe my problems are my own responsibility. But I have learned this past year there are some things that are too big to handle by myself. So, world, I am sharing my burden with you. My name is Sarah, and I [...]
watercolor painting of woman with orange hair

Why I Dread the 'Good' Days With Chronic Illness

Since becoming ill in 2015, there have been “good” days. Make no mistake – not a day has gone by since that fateful August that I’ve had even a significant fraction of the health and abilities I had prior to FQAD (fluoroquinolone-associated disability) – but there have been days when the nausea has subsided, and [...]
A ladder leading to the clouds on a blue background.

When the Endpoint of My Illness Continues to Move Away From Me

As a small child, I had a simplistic view of what it meant to “grow up.” It wasn’t necessarily that I would have the highest paying job, or own a herd of dogs (though that was definitely a priority). The thing I always wished for was that I could “grow out” of my health problems. [...]
Pain Scale Chart

When a Medical Resident Questioned How I Rated My Pain Level

I recently began seeking treatment at a teaching hospital which has its pros and cons. Some of the pros are that there are a lot of diagnoses and treatment being thrown out, giving the patient a better opportunity to get what they need. The cons, however, is that although you continue to see your doctor, [...]