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What You Need to Know About Medical PTSD If You're Chronically Ill

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You may not know this, but with chronic health problems, there is a form of PTSD that often goes hand in hand with dealing with all of it, and the health care system is largely to blame.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

• What is PTSD?

If your significant other told you something was “all in your head,” when you told them something was bothering you, you would call it gaslighting. If they controlled every aspect of your life, and refused you basic things, you would call it abuse. If someone said they had been abused, and the cops ignored it, or worse, shifted the blame, we would be outraged. If on top of it “well-meaning” friends and relatives laid more blame on you, saying if you did something different, things would get better, you would call it victim shaming. We call it medicine.

It often takes years to get a chronic disease diagnosis — sometimes an entire lifetime. Women especially have their symptoms dismissed as anxiety and depression, and pain labeled psychosomatic or conversion disorder. They are told to lose weight or exercise, shifting the blame back to the patient. Doctors are taught “If you hear hoof beats think horses, not zebras.” And if it isn’t something on the more common side, it basically doesn’t exist; nothing is wrong with you.

I once had a doctor tell me that I didn’t have scoliosis (I’ve had imaging done) and didn’t have a mitrovalve prolapse because he couldn’t hear it. (Again, prior imaging.) I had a urologist tell me I didn’t have interstitial cystitis and try and refuse the procedure for diagnosis, only to be proven wrong.

During a repeat C-section, they didn’t get the spinal in right, due to my small disc space. When I tried to tell her it wasn’t working, she told me that is impossible and almost cut into me anyway until I moved my leg to show her. I then panicked and begged to just get general anesthesia, and she told me I could have a spinal or go home.

It’s not just doctors either. After finally getting a diagnosis, I’ve had my insurance refuse a life-changing medication because my nap tests for narcolepsy were 15 seconds off. I tried to retest and had a panic attack as soon as I tried to fall asleep, because it stressed me out so badly that I might not hit their exact requirement again.

If I need pain management, or even mention pain, I am treated as a drug addict, even though I hardly ever resort to pain killers, because I hate being treated like a criminal and I don’t want to have a tolerance when acute issues arise.

I once had to wait two hours for pain relief, while I waited for a drug test, as I was trying to pass a six millimeter kidney stone, even though the same hospital had images of the 20 kidney stones I had. I ended up needing surgery it was so bad.

When I badly injured my shoulder during a partial dislocation, and the doctor could see the pain I was in when she moved it, I was told to take Tylenol. (It’s worth noting I never asked for pain killers, but was treated like I was asking before the fact.)

I have lived with Ehlers-Danlos syndrome (EDS) and narcolepsy my entire life, however, I am just getting the diagnoses now at 46. For my whole life, I was ignored or told it was anxiety or depression. Major events, like my collapsed lungs, were simply treated as one-time incidents, and no doctor tried tried to connect the dots. Most of my diagnoses I figured out myself, or I met someone with similar issues and knowledge, and had to ask, sometimes fight, for testing. I had a doctor tell me that FMLA was only for cancer patients and it almost cost me my job. These experiences span multiple doctors and multiple states. As a member of several medical support groups, I see tons of similar and even worse stories from across the globe every day.

So now, when I go to the doctor, I stumble over words. I am afraid to bring up my symptoms. I can’t look my doctor in the eyes. I am afraid to ask for help with pain, now my constant companion. I put off seeing the doctor, because what’s the point? I have panic attacks when something new comes up, not because of the symptoms, but because I need to go see a doctor, especially a new one.

I have paperwork I need to get done for my first geneticist appointment, and even that has been sitting on my desk for two weeks because that simple thing, describing all my health issues, seems overwhelming. Something in the back of my head is telling me that I am just going to be turned away, even though I have been assured otherwise. I’m getting to the point where a disability permit would benefit me on my bad days, and I am afraid to ask.

As my health issues progress, they are taking over my life, and I fear that if I tell my doctor that, they will think I am exaggerating and dismiss me.

Now I actually do have depression and anxiety, as time after time, the doctor/patient relationship fails me and even turns on me. And yes, I have PTSD, and unfortunately I am far from alone.

We are just trying to live a normal life, on top of lost jobs, lost relationships, and having pain every single day. On top of everything else that comes with chronic illness, some of the very doctors who took an oath to “do no harm” are dismissing, deflecting, gaslighting, and abusing some of the most vulnerable people in our society.

Our lives are hard enough, and it is no different than any other abusive relationship. It is, however, every bit as damaging, since being taught to second guess every symptom, and not wanting to go to the doctor or bring something up, can literally cost us our lives.

We can’t just leave either, as to us, the medical system is a necessity, and changing doctors often gets us called out for doctor shopping, as if, once again, we are seeking drugs or attention. And I often wonder whether someone who has been labeled a hypochondriac, even in the back of their doctor’s mind, gets the same treatment as someone else when they come in with a life-threatening case?

For someone with chronic health issues, your doctor is one of the most important relationships you will ever have. They hold your quality of life, and sometimes your actual life, in their hands.

The guilt and the shame. The doubt and the questioning your own symptoms. The walking on eggshells, and fear of expressing your needs. The constant questioning yourself, wondering if you are making a big deal over nothing: these are all the benchmark signs of someone who is dealing with abuse. It’s all there.

This is abuse. Plain and simple. And we pay a fortune for it and call it medicine.

And if you are reading this, and it’s happening to you, know that you are not alone.

Your symptoms are real. Your pain exists. It is a big deal.

I believe you, and your doctors should too.

This story originally appeared on So Real It Hurts

Originally published: August 13, 2019
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