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Finding the Right Medical Care as a Survivor of Medical Child Abuse

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As a survivor of medical child abuse, I have a difficult time seeking medical care. Even a 15 minute office visit with a provider I know and trust makes my post-traumatic stress disorder (PTSD) feel as though I am going back to the depths of the abuse, and that idea terrifies me.

Additionally, as a young female with a history of mental illness, I often get dismissed by medical providers before I have a chance to even finish describing what I am experiencing. One example of how pervasive this issue is was the time I went to the ER because I was unable to see or walk properly. Without running any actual diagnostic tests or even having a full conversation about what I was experiencing, the doctor in the ER told me my symptoms were somatic and sent me home with a discharge diagnosis of generalized anxiety disorder (which, in case you’re wondering, doesn’t cause the symptoms I was experiencing). The next day, I saw my neurologist, who diagnosed me with meningitis.

Between my anxiety from the trauma and the fact that I often don’t feel heard by medical professionals anyway, I eventually stopped mentioning anything that was not potentially emergent. Last summer, I had a cough for three months that wouldn’t go away and was severe enough to make me throw up repeatedly before I even called my doctor. The biggest problem with this is that the abuse I experienced did cause real medical disorders. My caregiver did not pretend I was sick when I wasn’t; they made me sick when I would not have been otherwise. As a result, I still have lingering symptoms. They aren’t as severe as they used to be, but they do still exist.

I have experienced chronic pain every single day for years, and today was the first time I have had a provider willing to hear me out and do anything at all about it since I got out of the abusive situation three years ago.

Is the pain bad enough that I regularly can’t function in my daily life? No. Is it utterly ridiculous that it took over three years of being in pain every single day before a provider was even willing to run tests? Yes.

To make matters worse, I know what I am experiencing cannot be purely somatic because my joints are audibly popping loud enough that people around me ask about it on a regular basis. Before today, none of my medical providers knew that because no one had listened long enough for me to have a chance to tell them.

At the same time, finally having a provider listen means I have to do a lot of things that are incredibly triggering. It means more tests and appointments and pills; it means my life is gradually looking more and more like it did when I was growing up. On some level, finally getting the appropriate medical care I need felt like admitting that my abuser, who still regularly tells anyone who will listen how sick I am, is right. I know they aren’t because I know I am not as sick as they tell people I am. I am still able to function as an independent adult. I am doing well in school and have a job that I love; I have a very busy lifestyle that I would never be able to keep up with if I was still as sick as they are saying I am.

The fact that I used to be so much sicker doesn’t mean I don’t still need these comparatively smaller issues addressed, but it’s so hard to get the treatment I need. I have to face the challenges of both pushing past my own anxiety and trauma while also fighting for providers to hear me out. Of course it isn’t my providers’ fault that I have to deal with the additional layer of challenges from my PTSD, but the fact that they know my history means they should do what they can to make things easier, when instead many of the experiences I’ve had have made it harder.

I wish I had found providers sooner who understood that just because I’m not as sick does not mean that I am not sick at all.

I wish it didn’t take years of struggling for me to just get four tubes of blood drawn.

I wish I had been listened to appropriately the first time I tried to express concern.

I wish providers realized that because I was so used to being so sick for so long, I know how to function even when I am experiencing severe medical challenges.

I wish they recognized that I am not going to appear the same as others my age with an identical set of symptoms, because I became accustomed to functioning in everyday life with so much more than this when I was a child.

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I want to be clear that not every medical experience I have had in the past three years has been problematic. I have some providers who I wouldn’t trade for the world, who have done everything in their power to make me as comfortable as possible, who listen when I express concern. Ultimately, it’s likely true that if I had tried to express concern more regularly, I would have found a provider willing to run tests without it taking this long. That said, no one would regularly do something that makes them feel like they are going back to the most difficult time in their life after repeatedly not getting what they need from doing so. The reality of the situation is it did take three years for just an initial round of bloodwork. It should have never been this hard. It should have never taken this long.

Providers, listen to your patients. That’s really the bottom line here. Even if you disagree with the very first word they say, they deserve to be heard. Dismissing their symptoms as somatic without hearing the entirety of their experience quickly crosses into gaslighting, even if it’s unintentional.

Survivors of abuse need medical care too. People with mental illness need medical care too. Even those with diagnosed somatic disorders legitimately need medical care sometimes.

But someone has to be willing to listen first.

Getty image by elenabs

Originally published: June 13, 2020
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