The Impact of a Lifetime of Doctor Appointments on Someone With Chronic Illness
When I was 11 years old, I went to my dentist because I had three baby teeth that had to be removed. They weren’t falling out on their own, and since I already had my permanent teeth pushing and causing me pain, they had to be removed.
Back then, I didn’t know I had Ehlers-Danlos syndrome (EDS), so I couldn’t even imagine I might have some issues with local anesthesia. After one or two injections, my dentist touched my gums and asked me if I was feeling anything. “Yes, doctor, I feel the same as before.”
“Well, it’s impossible,” he said. “It’s been 15 minutes and you had a regular dose of anesthesia, so probably you’re just feeling a little pressure; it’s normal.”
I tried to explain I knew the difference and that, no, it wasn’t just pressure, but I didn’t have time to say anything more. Before I realized what was happening, the dentist and the assistant had already grabbed some instruments and, in what seemed like an eternity, they just took my teeth off of my mouth, despite the fact that I kept screaming and crying through all the procedures. I couldn’t believe what was happening, why they wouldn’t believe me when I said I could feel everything.
“Oh, come on! It’s not that bad! And please don’t scream so much, the other patients in the waiting room will be scared to death!”
I was crying my eyes out, and for the first couple of minutes they looked at me with a smile of compassion, like I was making everything up just to get attention. But after 10 minutes of crying, their faces changed and they started looking at each other, worried that maybe, just maybe, I was telling the truth.
From that moment on, every time I came back there they called me “the girl who needs more anesthesia, we don’t know why.” And every time I asked myself why I had to go through hell to be believed, why my words had not been enough for them.
This happened 25 years ago, and I still remember it like it was yesterday: the excruciating pain, the shame, but mostly the feeling that nobody could understand my pain and what I was going through.
This is just one of many episodes that caused me severe post-traumatic stress disorder (PTSD) that surfaces every time I have to meet a new doctor. And, to be honest, even when I know my doctors, I still feel a bit nervous before the visit, because I had some bad experiences with specialists who I thought knew me well.
Sometimes the experiences and their consequences were clear to me from the beginning, like this dramatic event. More often, though, it took me years to see the deep scars all those experiences left in me, causing a lot of distress without me even realizing why.
For example, I went to see an orthopedic doctor when I was 18 or 19 because of my never-ending back issues. I was diagnosed with EDS when I was 32, so you can understand how many visits I had in my life. I clearly remember that moment when he said, “Oh my God, you have a 12-year-old’s bone structure!” with a tone in his voice like that was my fault. Like I did something in my life that prevented my body to grow in the right way, and that – since I was already 19 – I couldn’t do anything to save myself from what I had caused to my body.
It was awful and horrible. But the worst part is that although I completely removed this memory from my mind — it resurfaced a couple of years ago — for many years I suffered the consequence of this judgment.
It took me a lot of therapy to understand this, but for years I used to see my body as something that was not following my intellectual growth. I was too skinny and I already had a bad relationship with my body because I was ashamed of it, but it’s clear to me now that for too many years I looked at my body and all I could see was a child. I never thought I had a womanly body, I never felt sexy, or like someone could look at me and see an adult woman, not from the perception of my body. They could for sure think of me as a grown woman for my intellect, my wit, my face or my manners, but not from my body; especially my legs, I still have a bad relationship with them.
Now I can see all the trauma I had to go through, every scar these experiences left in me. I’m not gonna lie, knowing them it’s a good thing, but I know I’m still not completely over them.
I’m 36 years old and even now I just can’t go alone to a visit, and since my diagnosis every time I find some real nice doctor who makes me feel accepted, heard and understood, I start crying. Yes, I cry in front of my new doctors when I find out they are good, and sometimes it’s a bit awkward. But when it happens I explain to them why I’m feeling like that, and it’s beautiful to feel their comprehension and empathy.
I don’t know for how long I will live with PTSD, maybe it will be there for the rest of my life or maybe not, but I want to stay positive. Following PTSD awareness month, I want to make a commitment: I want to believe that some day all the good experiences will overcome the bad ones and I will feel safer going into a new doctor’s office. I don’t know if and when it could happen, but I hope it will.
Getty image by Maria Voronovich