This article originally appeared on and has been republished here by permission.

Image Copyright 2018 Megan Klenke.
Reproduced by permission.

Two years ago, I posted this picture on Facebook with some hopeful words. My mom and I were just about to leave for the Mayo Clinic in Florida. It seemed meant to be: we got a call saying they finally had time for me, we had hit our insurance deductible and our max out-of-pocket for the year so all the medical expenses were covered, and right after that we got an unexpected check in the mail reimbursing us for something from years ago that would cover our plane tickets. I was immediately reluctant to go after we got the call. I had finally just given myself permission to take a break from seeing new doctors temporarily because I had started having panic attacks not only before appointments, but even at the thought of making them. At the time, I did not know that medical trauma was something that existed. I have a degree in psychology from Purdue University and was taught nothing about it. So I felt “crazy” and “dumb” for what I was experiencing. And when we got that check in the mail, it felt like a sign. I made myself go. And the 10 days I spent at Mayo Clinic were the worst 10 days of my life.

It’s difficult to describe exactly why it was so terrible. I mean, sure, I spent each day from around 7am to 6 or 7pm there at the hospital, and sure, most of that time was spent either being poked and prodded by doctors or having extremely painful testing done. But that is not why by the end of the week I was sobbing uncontrollably almost every minute I was awake. I had spent 5 years being a professional sick person by this point. Obviously the physical torture and humiliation contributed a great deal to my medical trauma (and yes, it is torture — go have some autonomic testing done and then come tell me medicine is not still barbaric). Obviously I still hate every minute of it.

I’m a person even though I’m sick! Being sick is scary! I’m still scared no matter how long it’s been!

But I think the psychological torment is what sent me over the edge, and I think it is summed up fairly well in the one journal entry I wrote while I was at Mayo Clinic. It reads: “I’M STILL A PERSON. I just wanna scream at everyone. I’m a person even though I’m sick! Being sick is scary! I’m still scared no matter how long it’s been!”

The entry continues on to mention how these tests are things that would scare any normal person, that they would dread them, and how I am being very much pushed into consenting to them without any time to actually consider what is happening or if I can handle it. I had so many tests done while I was there. So much pain. I honestly have blank spots in my memory because I just could not deal with what was happening and I do not care–I do not want to remember. But again, this really is not because of the physical pain.

I did not feel like a person when I was there. I was not a person. I was a patient, a number, a chart, and I was treated as such.
Not only was I put through the gauntlet with all the testing, but the doctors were terrible. The epitome of egotistical. That was probably the most traumatic part honestly. I saw five or six doctors while I was there, and one was okay. But he could not do anything for me or give me any definitive answers. Which is okay. But he also did not care much to do anything further or keep trying so I do not consider him a great doctor. Definitely not the worst one I saw there, though!

I did not feel like a person when I was there. I was not a person. I was a patient, a number, a chart, and I was treated as such.

One of the doctors spent the first 15 minutes of my 30 minute appointment talking about how great he is. He graduated from blah, blah, and blah and they had requested him specifically to be the head of the department, and on and on. And after all that, he had no idea what was happening. It was one of those, “Well, this could mean you have this really bad problem, but maybe not, so let’s do nothing and see what happens!” appointments. He was my last appointment there, and he was telling me all about how I will get to see all these awesome doctors during my visit and they will all meet up and talk about me. Excuse me, sir, but my plane leaves in a few hours and I am never, ever coming back here.

Another doctor seemed to know my body even better than me! She would ask if I have a symptom, I would say yes, and she would say “No you don’t.” It was wild! I thought I knew what was happening in my own body, but apparently not!

Everyone else was just terribly unhelpful, and did not care to try. I spent the week hearing every single wrong thing you can say to someone who is sick and in pain, repeatedly. “But you look great!,” “You’re too young,” “Look on the bright side!” All of it. Everything that had traumatized me over the course of five years, all the disbelief, the lack of care, the mere indifference, it was all I experienced for those ten days.

Let me say here that every nurse or technician I encountered during my testing was very kind, and I have not unappreciated. I always remember the good people I find in the medical field, not just because they are few and far between, but because I genuinely value their care and help more than I can articulate, especially because of having this medical trauma.
And all this trauma is not solely the fault of Mayo Clinic. I am not writing this as a scathing review of their egotistical doctors (well, not intentionally!). As I said, I had already gotten to a point that I decided I could not handle seeing any more doctors than I absolutely had to. But I think this trip affected me so much because it was all so condensed. It was like concentrated torture!

The thing doctors forget is that this is my life. I’m a person and I have my own life outside of being their patient.

It has become difficult for me to do anything in the medical realm. I think it was worse a few months ago, but then again I have not had as many appointments recently. I have a hard time going to any appointment, I usually have a panic attack (or two or three) before, even if it’s a doctor I know and trust. I don’t like talking about my health most of the time, not because I don’t want to talk about it, I desperately need to, but because it makes me frantic and I panic again.

The thing doctors forget is that this is my life. I’m a person and I have my own life outside of being their patient. I understand that it’s got to be incredibly overwhelming to be a doctor or anyone in the medical field for that matter, and that it would be hard to continue doing your job if you dwell too much on the impact of the suffering each individual patient experiences. But the humanity of a patient cannot be completely forgotten!
I think a good way to emphasize this may be to share what the end of that journal entry from earlier was about. The last part of the entry was me worrying about my siblings not receiving Christmas presents because of me. We still spent a great deal of money on a hotel room, on rental car, on food. “What if it’s all for nothing? Again?”

What’s just another day at the office for a doctor, just another appointment, is my well being, my quality of life, my livelihood. My survival rides on those 30 minute visits. And being chronically ill affects more than just me — it affects every aspect of my life and every person in my life. The impact of the trauma I experience has a blast radius. And I am painfully aware of this. I just wish doctors were also, that they acknowledged it, so that medical trauma may be minimized as much as is possible. We’re people, not just patients, and should be treated as such.

Megan Klenke
Megan is a health blogger with a degree in Psychology from Purdue University. She has Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), Fibromyalgia, Celiac disease, and Occipital Neuralgia. She loves ballet and has a pet tortoise, Joseph! Follow her journey on Twitter, Instagram and Facebook and on her blog: