Subpar Healthcare: Medical Gaslighting: The Long Journey/Battle to my True Diagnosis

How many of you have felt that your symptoms were inappropriately dismissed as minor or primarily psychological by doctors? How many doctors have frequently blamed your health problems on your mental health, weight or a lack of self-care, which delayed effective treatment?

Ever heard “it’s all in your head?” Or “oh it’s just a minor headache,” when you’re certain it’s much, much more? It’s painful when your doctor doubts your issues. And what’s worse? Sometimes you start believing them.

There’s still this pervasive belief in the medical community that anytime a woman complains about her health, it’s either related to her hormones or all in her head. So many of us have been shuffled around to different clinicians only to end up seeing a psychologist.

Imagine feeling constant pain and your doctor says there’s absolutely nothing wrong with you. That’s when a very real fear kicks in. It feels like nobody will help you. If your own doctor can’t take the pain away, who can? This can lead to serious psychological consequences and emotional distress.

I have a history of abusive relationships with medical providers. My trauma history stems from medical mistreatment and being dismissed while experiencing serious symptoms. Going to the doctor involves surrendering very personal details to another human being who may or may not believe me. Since my illness began every time I go to the doctor, I sit on the examination table and mentally prepare myself to be disbelieved. To be condescended to, or even laughed at. To be told that I am, in fact, healthy — and my perception of my own body is distorted by mental illness or unacknowledged stress.

For five years, I knew something was terribly wrong with my health. I was desperate for answers. I consulted with a double-digit number of doctors and specialists, including Neurologists, Neurosurgeons, Orthopedic Surgeons, GI specialists, Gynecologists, and even Gyn-Oncologists. Many insisted I was perfectly healthy, assured me that my pain was just bad periods, or urged me to better manage my stress. I was told by physicians that my “stabbing, burning, and tingling” pelvic pain was nothing to worry about. Despite severe cramping, pressure, swelling, also constant pain in my lower back, thigh, hip, buttock, along with bladder issues etc… They told me that every concerning symptom I had was caused by some deep-seated psychological pain. I was told nothing was wrong and encouraged to seek psychiatric care. Being told I was fine was terrifying.

Most of my medical records (testing) from the last five years.

In May of 2019 after two years of MRIs, CT scans, ultrasounds, blood work, GI testing, and being poked and prodded by five different Gynecologists I was diagnosed with Fibromyalgia by a Rheumatologist. I was only diagnosed with Fibromyalgia because none of these doctors or specialists I went to could find anything else wrong with me that explained the cause of my pain and symptoms. All the doctors and specialists insisted that the Tarlov Cysts (also called Perineural Cysts) showing on my 2018 lumbar MRI were only “incidental findings” and were not the cause of my issues. I was told not to worry about them. Repeatedly, I was informed that Tarlov Cysts are “almost” always asymptomatic and do not cause problems, even though every symptom I experienced matched the symptoms of Tarlov Cysts. My MRI showed multiple large cysts within my spinal canal at the S1, S2, and S3 levels, which would explain away my pain and symptoms. I wondered, what if I don’t fit into that “almost” category? What if my cysts are symptomatic? Every test I had over the two years since my symptoms and pain began these cysts were the only possible “bad” finding showing up on any of my results.

Unfortunately, my story echoes the experiences of many people with Fibromyalgia and invisible illnesses that have been subject to similar treatment and/or have been labeled one of the terms listed above. Those terms, and the treatment associated with them, are a practice of subpar healthcare known as “medical gaslighting.”

Many of us have been gaslighted in our lives. Gaslighting can occur in romantic relationships, politics, social media, and even in healthcare, by our own personal doctors who we believe have our best interests in their hands. Gaslighting is a form of emotional abuse in which one person repeatedly denies another person’s reality. This can cause the victim of gaslighting to feel invalidated or to doubt their own reality. Medical gaslighting can happen to anyone, but certain individuals are more likely to experience it than others. For example, women are more likely to experience gaslighting than men and to have their symptoms mistakenly attributed to stress or mental health conditions.

The fear of being mistaken about my physical symptoms, and subsequently laughed at and dismissed, lingered years after I was diagnosed with Fibromyalgia, knowing I possibly had another terrible disease that required a very risky invasive surgery to stop the progression. But no one listened. Mental health challenges such as depression, anxiety and panic disorders arose from years of feeling sick, scared, and in pain for no real determined reason. The more I began speaking up about my body’s sensations and about feeling rejected by doctors, the less confidence I had in my pain experience. After years of this cycle, I lost trust in my judgment and began to question the validity of my symptoms. I began to question my diagnosis of Fibromyalgia. I do have heavy fatigue, vertigo/dizziness, nausea, blurred vision, weakness (especially in my legs) and body aches and pains, but most of my symptoms and pain affect my right-side pelvic/sacral area, my lower back, tailbone, lower right abdomen, hip, thigh, and buttock. I have constant pain along with burning sensations and shocks through my groin and thighs. I also have trouble sitting or standing too long. I constantly try to avoid applying any weight to the right side of my body to help alleviate symptoms and pain. I was told many times by my Rheumatologist that Fibromyalgia does not cause pelvic pain, especially the symptoms and pain that I had.

On average, Fibromyalgia can take 3-5 years to diagnose. Tarlov Cyst Disease even longer due to the stigma and rarity. Though Fibro is not a rare disease, it can be misleading, and mimicking of other more common or rare conditions. This was an arduous and frustrating process for both me and the doctors. The doctors grew weary of digging deeper into unraveling the mystery of my symptoms, they deflected their frustrations by gaslighting me. I was called “difficult” for asking for more lab work or “attention seeking” if I asked for a second opinion. I was even called a hypochondriac for asking too many questions.

Weeks and months of waiting to see a specialist seemed like a waste of time when my test results would come back normal (because they refused to acknowledge the Tarlov Cysts), and I’d receive the brush-off with anxiety and antidepressant scripts. I tried to explain to the doctors that I wasn’t in pain because I was depressed. I was depressed because I was in pain ALL the time. Even when hospitalized with acute attacks, I experienced dismissals because my severe pain was invisible; “incidental findings” and therefore easy to disregard. I left each time feeling disappointed, sad and uneasy, because I knew they had not solved my problem or helped me in any way, and it had been yet another wasted day. It always felt like they were saying, “it’s all in your head.” Meanwhile, my body felt like it was rejecting itself. I felt a fatigue that was beyond explanation. The symptoms and pain significantly affected my quality of life.

Every doctor I saw was fed up with running tests and peeling back the layers of my symptoms to get to the core of my diagnosis, they projected those feelings onto me through egotistical comments, blaming me for my symptoms, and began dismissing me completely. I felt as though the doctors were telling me that my excruciating pain was something that a woman needs to just live through. I felt dismissed, unheard, and hurt. Sized-up and diagnosed with an emotional issue, all the while being misdiagnosed, misled, and mistreated …by more than one MD. When doctors mistakenly concluded that my symptoms were either ‘all in my head,’ or being caused by the Fibromyalgia they delayed a correct physical diagnosis. This is especially crucial for patients with a rare disease like me, and I had already waited five years to be diagnosed.

Condescension can kill. Every doctor either didn’t believe me or blew me off when I brought up the Tarlov Cysts. They manipulated me into thinking that my symptoms were either not real or caused by Fibromyalgia, even though I indeed have Tarlov Cyst Disease. That can be very dangerous. I knew it was time to stand up and fight for my right to be heard, treated with respect, and shown dignity.

Thanks to a few exceptional medical professionals, I now have an explanation and confirmation of my Tarlov Cyst Disease diagnosis. It only took moving over 3,000 miles away and obtaining a new primary care doctor, who believed that Tarlov Cysts can cause debilitating symptoms and completely destroy quality of life. When I finally got the diagnosis, I felt vindicated in a lot of ways. Unfortunately, the condition had grown so much worse over the five years it took to get the confirmation that it now requires spinal surgery to stop the progression, and that may not even be enough. It took so long to get the diagnosis that throughout that time nerves were being damaged by compression; my sacral bone eroded and is still eroding from the continued growth of the cysts. During my consultation The Tarlov Cyst Specialist confidently told me to, “forget about the Fibromyalgia.” It had taken me three years to accept the diagnosis of Fibro, only to have him create more doubt in my head. Do I really have Fibromyalgia, or was I misdiagnosed because none of the doctors would take the Tarlov Cysts seriously? Afterall, the Tarlov Cysts showed on my imaging in early 2018. My Fibro diagnosis came much later in 2019. Regardless, I’ll never get back the last five years or pieces of life I’ve lost due to medical neglect. I can only hope that the surgery gives me back some of my quality of life. Unfortunately, with the surgery there are no guarantees.

Anyone is susceptible to gaslighting, and it is a common technique of abusers, dictators, narcissists, and cult leaders; however, it can be deadliest when it is perpetuated by a doctor or medical professional. Medical gaslighting is often associated with several symptoms. In gaslighting cases, medical experts make light of your symptoms or ignore them completely. Your feelings don’t matter, only their diagnosis does. They may go as far as telling you that you are “imagining” your symptoms, or your condition isn’t as severe as you think. They might misdiagnose you with something less serious. In this case, you’d be getting treatment for a condition you don’t have at all.

Research suggests that diagnostic errors occur in up to one out of every seven encounters between a doctor and patient, and that most of these mistakes are driven by the physician’s lack of knowledge. The search for an accurate diagnosis and treatment can be maddening. If your provider misdiagnoses you, or just sends you home altogether, what does that mean for your existing condition? A delayed diagnosis (or no diagnoses) can lead to disease progression. Your underlying condition can worsen without you receiving the proper treatment for it.

The other thing to keep in mind is that most of women’s symptoms are often brushed off as psychosomatic from the get-go. First of all, it is important to remind yourself that though doctors are experts in certain fields, YOU are the top expert of YOUR body. Always pay close attention to your symptoms, particularly if they are new and affecting your quality of life. If you feel that a doctor or medical professional is unable to address your symptom or complaint, or isn’t giving you adequate time or answers, ask them to refer you to a specialist to get a second, third, or fourth and even fifth opinion. You absolutely have the right to do that.

I know us women have a harder time pushing back and advocating for ourselves. We feel like we need to be good patients, which means accepting what our doctors tell us. But by doing so, we’re stripping ourselves of a voice. We deserve to be listened to and to feel like our doctor really cares about us. If you bring up a concern and your provider is being dismissive, push back. Remember, you know your body best. If something bothers you, you need to speak up for yourself. Remind yourself that you have authority over what’s inside your head — not the doctor who claims that’s where your pain comes from.

Doctors hold great power in having the last word in a patient’s mind, even long after an appointment ends. Days and even months later, whenever you feel your heart pound or your joints ache, part of you wonders — is this real pain? Or is it just all in my head? When a medical professional leads you to question your sanity in this way, it can be just as traumatic and abusive. Remember that you deserve to find a doctor that you can trust—one who genuinely listens to your concerns and delivers the best care possible.

I know my five-year long experience (and going) confirmed what I’ve long believed, women need to embrace, trust, own, and protect their own bodies.

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